McQueen Family

Christmas 2011

2012-01-07T15:47:00.000-08:00

Christmas 2011 pictures are up! Click on the pictures below to get to the albums:

Christmas 2011

We were very blessed this year. The kids were spoiled as usual. As much as we always promise we are going to be minimalist with the presents it just never works out that way.

Our other album is just the events from December. It was very busy. Went to the yearly HopeKids Christmas party, which is always amazing. We went to the Grand Canyon the week of my birthday followed by a ride on the "Polar Express" or Grand Canyon Railroad in Williams, AZ. The kids had a magical time. They really did believe they were on the Polar Express.

The next week was Maddie's dance recital. We were really afraid that she might not perform. At the rehearsal she absolutely refused to get on stage. She was crying, digging her heals into the floor. Absolutely petrified. But the day of the actual recital, when she couldn't see the audience because it was dark out there and light on stage, she performed like a champ. We can't wait to see the video, which is being delivered, because of my epic fail with the video camera most of the month.

What was that failure you ask. Well I changed a setting on the camera to close up instead of regular viewing. I am blaming it on mom brain, which will officially last until all my children are in school. Then I will be able to think again and function like a normal human being again. I hope... :)

We ended off the year with the plethora of usual school activities for Alex. And finally Christmas. Which was wonderful. Thanks to all our friends and family that made it possible this year. Amazing.

And to a wonderful 2012!!

Next time, Dylan's yearly biopsy report. Prayers and well wishes always accepted.

The Gift of Receiving

2011-12-24T20:24:00.000-08:00

So it's Christmas time. And we all know the wonderful joy of giving. Or at least I hope we do. It feels great to see a smile on someone's face when we have put so much effort in finding the perfect present. You just know it's going to be good.

But what about the joy of receiving? I know sometimes I have a hard time getting compliments much less presents. There has been a lot of effort trying to develop the grace to really be able to receive things. Of course you are going to get presents on your birthday, or anniversary, or Christmas. And we instill this same kind of system for our children. So over time with the excitement of expectation can turn into entitlement.

But then a funny thing happens. When you get older and out on your own, the presents come less and less. And more often than not you know what you are getting. It's fun, but the magic wanes. So you forget the exhiliration of receiving. Because you are older now and that stuff is for kids.

And when you receive a really heartfelt compliment. It shocks you a little. You think, "That was really nice". Sometimes if you take a step back and really open up we can truly accept the joy of receiving. Something unexpected, that makes you feel amazing and it is free. It is from someone's heart that you may have known for years or minutes. But nonetheless if you really allow yourself the gift to receive it provides the same kind of joy that presents did when you are younger. And the magic is back. Just because you opened your heart.

Recently we had a surprise. Our doorbell rang and a few hurried knocks were left at our door about two weeks ago. I was home alone with the kids. It was about 7 o'clock. Brandon was working late. I was a little freaked, because my mind raced back to one of those stupid chain letters with a serial killer leaving a crying baby at the door. And so I cautiosly looked out the window by our front door and no one was there. Then I look out our peep hole and no one was there. And then Alex pushing his way to peek in the very recesses of the window says, "There's a bunch of presents out there". And I'm thinking yeah, right....maybe? So I tell the kids to hang back and I open the door. And sure enough there is a pile of presents there as tall as Alex. I look out the door and no one is there. I pull the presents in one by one and Alex yells, "Hey! Come Back!". I in turn just yell "Whoever you are, THANK YOU". If half the houses weren't foreclosed on our street, my neighbors would probably all think I was crazy. And after I get all the presents in and the kids are settled down. I finally allow it. The joy to creep over me. The joy of having presents and I have absolutely no idea what they are. The joy of realizing that my family gives so much to us as well. The joy that we are truly blessed. So I turn on a show for the kids. And as I turn to make them some hot chocolate for the night, I happily sob tears of joy at my stovetop. I realize I am truly blessed.

All the times over the past years, I have suppressed a lot. It has been my defense mechanism. It protects my heart against the what if's in life. What if we don't have enough money once I stay home? What if we can't make it? What if we lose our child? How on earth am I worthy to receive the heart for my child from another family. I can't think of a gift much larger than that. So I pushed it down. I didn't want to allow it. I couldn't deal with the fact that they had to lose. But they didn't. Their child lives on. And my child is one with theirs. And I can finally allow it. The joy of receiving.

Kind of like being a Christian. You always hear that God gave his only son. And you hear it so much that sometimes, it just doesn't resonate You take for granted. But I think I get a small glimmer of it now. How on earth am I worthy of redemption. For every thing I have ever done. How on earth could I receive that kind of gift. Not even something in the here and now. But something that is timeless, everlasting and full of grace and mercy. And that is true joy. When you receive with an open heart even though you may not be worthy. Because you know the giver gives with love and it makes them happy to give the gift. And even happier when you receive it.

So it all comes full circle. In receiving Christ I then am able to receive grace and then something as great as Dylan's heart or as small as a compliment. And I am thankful this season for receiving all gifts great and small. I hope you are thankful too.

Merry Christmas

Are you a still a transplant mom once the transplant is over?

2011-09-24T22:35:00.001-07:00

I have been questioning a lot lately where my place is in this world. It used to be so clear. I had a career and that defined me. But once the career has been upended by something crazy like your child’s medical emergency, who are you then. Well, now you are transplant mom. And you can fill in transplant with any other triumph you have survived. And what if you are a dad going through all of this. I look at all my friends in admiration. The heart moms, the foster moms, the widows, the military moms and so on. We have all been through it in one way or another. But once the ending to the first act is written. Where is our happy ending? What defines us once the operation is complete or the legal papers have been signed?

Does clarity of our existence lie within or above. Now you all know me as a Christian, but one that respects the fact if you are not. So this is not going to be preachy. But to cover it all we will use the “higher power”. In the day to day, I pray, a lot. Every day I am so tremendously grateful that Dylan is not in the hospital right now, almost to the point of guilt. I hurt when I see my friends suffering so. Whether it be with a wayward teen or a life threatening procedure. Empathy is one of the things that make us human, right?

What insight should there be in a routine day for the rest of us. Well of course one word would sum that up, love. When you quiet the mind and breathe and just look at your kids, no matter the situation there is love and gratitude. Despite all the worries or how they might drive you completely insane at moments, there is amazement at how they are born their own little person from the start. Not filled with fears or preconceived notions of how things “should” be. They are free, beautiful and in complete wonder of the world. And in that moment when you are looking at the them from afar, you realize that you don’t need any of your fears or preconceived notions about the world as well. And that you can just spend a completely “unproductive” hour playing candy land, talking about school or just gazing into your newborns eyes and everything in the world is peaceful and perfect.

So at this point you are happy with the place you are in the role of parent. As you should be. Because if you can find that moment, where you can breathe, look, and listen, then you have found the most Zen moment you will find while you have little ones in the house. And good for you. But again, back to what defines us. The person outside of the parent. What we used to be. When we were 21, and the future was wide open and we were going to be super awesome at whatever field we chose to conquer in life. For sure we were all going to achieve success, whatever that is. What happens when life sideswipes you OR typical life happens and you become accustomed to the mundane. Well you certainly take the tragedies and make the triumphs. And for the mundane to be changed into something spectacular just requires a little action to take yourself out of the norm.

What I finally determined is that to be something spectacular is as simple as just being. Maybe, I am just over-complicating things, trying to justify myself with titles. How about just being you, being good enough? We don’t have to let all of our former baggage define us, or worse yet justify the reason we are the way we are today. We are ALL worthy without the timeline backing us up. Every time I meet a new group of people at one of my kids events, I don’t have to be “the transplant mom”, I just have to be me. Smile at everyone and hope you get some smiles back. And in some cases a hug too :)

So this letter is to all of current friends and all the friends I am to make. I am welcoming you with open arms. And while I may seem to have a little chaos in my life, I bet you have a fair amount of chaos too ;) And that’s OK. I love you all!

Until next time...

P.S. Prayers to those mom and dad friends of mine that are still fighting their battles. You know who you are and our hearts and prayers are still with you.

2011-06-15T20:31:00.000-07:00

Wow, is it already summer again. Seems like the saying is true. The days are long, but the years are short. It does actually feel like things are going faster and faster. Especially with kids.

I can't believe I made it through my first born's kindergarten year. And I had nothing to worry about in retrospect.

But at the beginning you always worry. Will he fit in. Is he going to do something horribly embarrassing for him.... or worse for me. Will he be smart enough or will he be too smart for his own good. Will be be bullied or will he be the bully. Of course none of those things actually happened. And of course my worst fear, of all the kid illnesses he brought home, none of them landed Dylan in the hospital (thank God!).

What did happen was that Alex fit in great. He had a wonderful, caring teacher who

helped him every step of the way. He excelled. He made wonderful new friends and a brand new sense of confidence. He is learning everything from his ABC's and 123's to the world around him by exploring and soaking in his very environment. He is starting to grow from a little kid into a big kid right before my eyes. And I am already so proud. Congrats to Alex for graduating to the first grade!

Also we celebrated some birthdays after the past month and a half. Maddie April 28th, Dylan May 6th, and Alex June 1st. For 3 weeks it looks like they are all one year apart (and that I am a ~crazy~ person). They all had a wonderful time and got loads of great presents. (Thank YOU family and friends!) This year was Alex's year to have a party. He chose ChuckECheese this time and he had a wonderful time. I love how they have a "party planner" that just kind of takes over so you can relax. Makes it worth the little bit extra.

Well over the last month, we have had many changes for Dylan too. Very good changes. Of course the last blog was completely devoted to his G-tube removal. As a result we have cut back our therapy house substantially. Speech/Feeding is now down to every month. Occupational is down to every 3 months. Developmental therapy has ended. And today was our current nurse Miss Deanna's last day, *sniff*. Have I said that we have been more than blessed with all of the wonderful people that have come to help Dylan (and ultimately the whole family). I am sad to see them all a little less, but thankful Dylan is doing so much better. And thankful we had the opportunity to have such amazing people introduced into our lives, hopefully as lifelong friends.

And oh yeah, there was a trip that occurred

too! We went back to Utah to visit Brandon's family. Which might I add is always a nice welcome from the summer heat we are about to experience here in AZ. Yes, even when it is s

nowing in late May, lol!

Let me give the quick play-by-play. Night one, we stayed on the strip in Vegas at Mandalay Bay. Gorgeous room. And as good as it gets for a Las Vegas hotel on the strip with kids. We got in and went straight for the pool. Which was awesomely refreshing after 5 hours in the car. They have it laid out much better than I would have thought for all ages. All the people that would normally be offended by kids in Vegas opt to go to the topless pool up on another level. Fine with me, everyone's happy, haha. Then after that Shark Reef. The kids are always awestruck by the jellyfish, manta rays and sharks. And finally dinner, we opted to go across the street to Rainforest cafe at MGM. Which once you weave past the drunks and hobos wasn't all that bad of a walk. The kids especially liked riding the tram on the way.

So of course the whole next week we got to enjoy the majestic views of Utah. During most of the trip at about 40 - 50 degrees. In the morning much closer to freezing. Hence the snow. I won't complain as I am already staring down triple digits here. And quite honestly I love bundling up. We got to see much of Brandon's family who are always really nice to visit with. And we stayed with his grandma. Who is always so hospitable and sweet. It is so laid back and nice up there, sometimes I think I could stay forever.

Well Sunday was the big highlight for Dylan (and probably the other kids too!). We g

ot to ride on Thomas the Train in Heber. It seems crazy how much you spend for a 15 minute train ride. But when you see their little faces, it does make it all worthwhile. And to hear them talk on and on about it for weeks, makes it priceless.

By Friday we were already leaving. Seems like no time at all. We went back through Las Vegas, but this time stayed off the strip at this little place Ravella at Lake Las Vegas. It is on your way out of town to Arizona. But really, really nice. Especially good option for people with kids. It is a resort/little village area with shopping constructed around this man made lake. So you can go to a multitude of little restaurants or pubs and shops. Then when you are done you can take a tour of the lake on a boat they have for rent. They also have this amazing manicured garden area that you can have breakfast in (and we did) with little mazes and arches for the kids to play around. All complete with a firepit at night for sitting around and relaxing. Really cool and a nice ending to our vacation.

All in all a wonderful time. I have a clearer head now and am very much more relaxed. I wish we could do it all over again. And hopefully soon we will. But in the meantime, other adventures await. Things like swim lessons and how to keep kids busy in the dead of summer when you are running from one air conditioned building to the next. Without spending a fortune.

Until next time...

Goooooooooooooodbye G-Tube!

2011-05-04T21:27:00.000-07:00

*(Warning: pictures of actual G-Tube in tummy below)

Okay, so most everyone knows the good news by now. I have just finally gotten around to blogging about it. And yes, they pulled Dylan’s G-Tube exactly three weeks ago. We (mostly me) am absolutely overjoyed to be rid of that thing. I know I speak for all G-Tube mommies and I can say they are sometimes a necessary evil, but they are gross, gross, gross. And it is so nice to have Dylan in one piece without plastic pieces sticking out of him.

It wasn’t that long ago, that this was just a light at the end of the tunnel. Dylan at one point was on 24 hour feeds. That means the pump that slowly chunnels food into his system was always going. The sound I won't soon forget, but would like to. In tiny increments, tablespoons or cc’s at a time. It is painful not to be able to feed your own child without them throwing up. Knowing they are getting weaker and weaker by the minute.

But since the transplant, and due to our very diligent therapists, nurses, my constant nagging and just Dylan’s perseverance, we took that few tablespoons and built it over years to a tolerance of what a normal kid eats or drinks. It seems like lifetime ago that we were watching a timer to make sure he held down his food for at least thirty minutes. That I would look at other mom’s in envy, wondering when it would be our turn. Why didn’t Dylan just automatically start eating once he got his transplant. Why did we have to struggle so much with one of life’s basic necessities. Shouldn't this just be natural?

Well enough of the backstory. I know what I would want to see. The before and after pictures.

Before

After

And yes, Dylan is still doing great. He calls the place where his tube used to be his second belly button. We still struggle with getting him to eat a lot. But I guess that is typical with a lot of kids in Dylan’s situation. If prodded he will eat as much if not more than his brother and sister. He takes two steps forward and one step back as far as his weight is concerned, but the important thing is that we are continually moving forward. I cannot wait to see what the future has to hold for this little guy. I know without a doubt that he will surprise me with exactly how much he will be able to eat someday.

So to sum things up, we are thankful. And to all the G-Tube parents that are still struggling out there, our thoughts and prayers are still with you.

The Light at the End of the Tunnel

2011-03-22T20:51:00.001-07:00

Oh how I wish I was more consistent with my blog entries. But, alas, life does take over.

Anyhow, let’s get to the news for the last 2 months. The big news is … we got approval from GI to take the Dylan’s G-Tube out. Hooray!!!!

So now the details. We went to GI clinic this past Monday. We did the typical weigh in and measurements. They are very happy with his growth trending. Then they ask me how Cardiology feels about the G-Tube. I told them that both Cardiology teams are ready for it to come out. So with that they said that they wanted to wait one more month until peak flu season is officially over, just in case. I completely agree with them. If it is just one more month that I have to wait to finally be done with this thing, I can do that. They said they are just going to pull it out in the office. If it doesn’t heal up in a week’s time, they will schedule surgery to close it up. But I have been assured that in most cases the hole (which is about the diameter of a pencil) will close in a few hours.

Even with all the battling and complaining I have been doing from the very beginning of the G-Tube being inserted, I really do understand the reason. And yes, hindsight does give me a better vision of how this really did keep Dylan stable. Through all of the granulation tissue forming over his button, the cauterizations, the way this button leaks sometimes, and just that it is plain gross, I am thankful for that point it has brought us to. It has been a love/hate affair. Mainly hate. I am sure any mom that has dealt with one of these bad boys will agree. But in the end, he is eating. And oh how he is eating. He has eaten every texture and complexity I had available to me. Everything that I could offer him that was safe he got. I gave this kid steak, taffy, soup, yakisoba (with chopsticks) and he ate them all.

I am so proud of this kid; I just don’t even have the words. He has dealt with everything I have shoved in his face. Despite his desperate pleas/cries/yelling against some foods he was compliant in the end.

For my friends and family who have never seen an eating disorder. It is truly one of the most painful things I have ever had to suffer. With his heart issues, change was pretty quick, dramatic and scary. But with eating issues, it is slow and agonizing. You start with just liquid. And everything makes them gag or vomit. You start in really small amounts. Think teaspoons and cc’s. And months of time you are measuring progress in ounces. You are massaging lips/cheeks/gums to desensitize so they won’t gag. You are watching to see if they are chewing on both sides and moving from right to left. You are always on edge if they might breathe something in.

Because what I took for granted with my other two, the fact that you just pop a bottle in their mouth and they drink. Or that the worst that might happen is that they preferred the banana baby food over the squished peas. Or when that transition to solid food might happen. All these things happen so fluidly. With relative ease.

When your child doesn’t seize that first opportunity to suck and swallow in those first few weeks of life. It can take months/ years to replace that instinct with learned conditioning. Along with the fine expertise of all the amazing people that have assisted Dylan with eating.

So whenever you see a child with a tube coming out of their nose or belly. Try to be kind and patient with their parents. They are in the midst of learning extreme amounts of patience.

And again, thanks to all the many people who have been here with us through it all. Those who taught me a whole new kind of patience. I am hoping to report good news soon. And hopefully pictures of a celebration party for Dylan when this tube is officially comes out.

Until next time…

Where did we leave off?

2011-01-21T18:58:00.000-08:00

I think it was August the last time I made a blog entry. So if you are reading this somewhat regularly you might be curious as to why the prolonged silence. I could say life happens. But in reality I have been pouring most of energy into a new website. Not work, but a website of practical knowledge about transplant from a parent's point of view. This in the hopes that it might help someone else have a little bit easier time than I. Since the whole thing is costing me that much, I figure if I make one other person's life easier, then it will be worth it. I plan to release the site next month, but will let you know if we are on target in the next blog. Which should be on a monthly basis, like it has generally been in the past.

Now that I have given a lengthy explanation for my absence (and you have forgiven me!) I will go on to what you really care about. What is going on with the family.

Dylan has been doing amazingly well. Almost so well that I am wondering if something is just lurking around the corner. But I do try to keep a positive attitude most times despite that fear. We were just in Dallas this week for Dylan's annual heart cath and biopsy. If you wondering what that looks like in animated form, I did find a video (http://www.youtube.com/watch?v=xwh3tlFaVm0). The doctors said that everything looked perfect and that he had no signs of rejection. Two years with his new heart and counting. We are incredibly thankful!

Eating has also been a great area of progress for Dylan. He stopped using the G-Tube completely about a month ago. When we make it through the end of flu season, he will most likely have it removed then. As a result of this he will no longer need feeding therapy soon thereafter. He will probably only need speech and occupational therapies until his third birthday and then that will be discontinued as well. It feels like a semi normal little boy is just within arms reach. Sometimes I can't believe we are so close.

Alex has also been doing really well. He is doing so well in school. Alex is so social. So he really needs to have friends to make him a happy. Dylan and Maddie like people too, but they are content just to play on their own most days. Alex loves everything about school; homework, friends, recess. What's not to like!

Maddie has definitely hit her defiant peak. I hear it will double when she is a teenager. She has gotten really good at saying "NO Mommy" and "I NOT". Especially upon requests of cleaning up or eating anything other than chocolate. Thankfully she is incredibly cute and occasionally she is the sweetest little girl. This of course keeps me from losing it when she gets mad and is screaming so loud I swear glass is going to break. And the things that set off little girl tantrums/screaming. Not getting injured or being really scared. Apparently it is ok to scream bloody murder when your brother pushes you down, you get your feelings hurt or that Dylan grabbed one of your dolls and ran off.

So this is all normalcy to us now. Better than our previous norm.

Before I finish up this month's blog I do want to extend a big thank you to all of my friends and family in Dallas. We were so thankful for the hospitality shown to Dylan and I while we got his annual clinic visit.

Until next month...

Beginning of school, end of the G-Tube?

2010-08-19T20:49:00.000-07:00

Well the last few weeks have seemed like a whirlwind of activities. Alex my firstborn has begun school. And I am probably one of a very few who are happy about him being in part time kindergarten. Maybe it is a little selfish on my part because I get to ease into having him in school. And I do love having him around. But then when I need a break, it's time for Kindergarten, yes!

Gearing up for kindergarten almost takes you to a different place and time. Buying the crayons and glue sticks. Reminds you of a time long past when you were much shorter and time revolved around recess and story time. When your worst fear was that your best friend was sick and you wouldn't have anyone to play with that day. Or that you might get in trouble for coloring outside the lines (thankfully they don't care too much about that anymore, because back in the day I got smacked with a ruler for that one, ouch!). It is nice to know that innocence and wonderment of the world around you still exists, if only for a short moment.

So far Alex has loved it. He is making new friends everyday. He gets to have a lot of story time which he loves. And he gets lots of recess which he loves. And I love, because recess in 110 weather makes for a tired boy the rest of the evening. So the verdict on Kindergarten is so far so good.

Maddie loves Kindergarten too. Because Maddie finally gets some one on one time with mom. Poor thing has been stuck between Alex and Dylan, which makes it hard to get noticed. Don't get me wrong they are the two happiest boys you will ever meet. But sometimes I think the term high maintenance was invented for them. Alex loves attention. And Dylan's circumstances demand attention. So Maddie has had to resort to some creative methods to get noticed. She can repeat a question about a hundred times, almost to the point of driving you to insanity. And they way that she is a total daredevil leaping off tables and couches where it makes your heart almost stop. All the while throwing back her head and laughing a villian laugh mwah-ha-ha-ha. But then when you are about to lose it on her, she comes over and gives the most innocent smile on earth and then just lunges at you with her arms around your neck and gives you a big hug. She is going to drive some guy nuts one day :)

Now for Dylan. I didn't write about this sooner because I didn't want to jinx it. We went to swallow clinic here last week. We were to bring some foods he liked and some he didn't like. We got to meet with the doctors, nurses, and therapists and then pretty much put on the dog and pony show of how well Dylan does or does not eat. Anyone with toddlers knows that sometimes they eat and sometimes they don't. It is totally dependant on their mood. So I went over to the local bakery/restaurant and picked up a smorgasborg of items. Most that he liked. I got some hard to chew things like bacon and sausage. And I got some easier things that he loves like fresh baked bread, fruit and yogurt. Then I brought some other hard things like pretzels and chips. And some soft things like vanilla ice cream. And then I brought the one thing he hates, chocolate. I know, weird. Thankfully he brought his A game and he ate like a champ. He tried and ate most everything, except the chocolate. But he did show defensiveness whenever a stranger tried to put things in his mouth. Which is understood considering the circumstances.

So today we got the verdict. They want him to come in twice a week for one month. IF he does well then the G-Tube comes out. Yippppeeeeeeeeee!!!!! I am seriously going to throw a party for him that day. That nasty tube has been the bain of my existence. I hate it so much. If I owned that pump for his food, I would take it out Office Space style and smash it to smithereens. And probably do a dance around the remaining shrapnel. Grrrrr, can you tell you I will be thankful when it is gone?

So all in all pretty good news over the past month. Thanks again to everyone for the positive thoughts and prayers. Keep 'em coming.

Pictures for the month are here (http://picasaweb.google.com/mc12041/August2010?feat=directlink)

Until next month...

Summer Vacation

2010-07-07T19:40:00.001-07:00

Wow it seems like forever since I have written, but alas, it has only been a month. Of course there is lots going on because it's summer. The kids are taking swim lessons, we went to see family in New Mexico, and we have all the typical medical and therapy appointments. Things are going very smoothly (knock on wood).

First off with the swim lessons. Alex is doing great. He is already in the big boy swim class and not in the preschool classes anymore. Maddie .... well ... she is trying, sort of. Maddie is in the defiant stage. The answer to everything is no. That is unless you get down to her level and give her a detailed explanation as to why things must be done this way. She does not respond to barked order as the boys do. Which is time consuming, for me. Yes, yes, I know it is challenging me to do things the right way. But it still takes a lot of time. So given this stage she is at, she also does not trust the teacher. She often won't do what she is told. She spits water, she constantly kicks in the water, and once she even licked a classmate on their cheek. I know, it's weird, I have no idea why. So at the end of her last set of classes, she comes out of the pool with this little slip of blue paper. I had never seen this before, so perplexed, I take the offered blue slip. It states "It is recommended that Maddie take Preschool B", which translates into being held back for the next session. Funny, Maddie's first getting held back. I kind of felt bad for her, but then I realized that she doesn't know the difference. That and talking to other moms, I guess a lot of the kids get held back. She is still ultra active in the pool, but she is trusting her teacher more to learn how to swim. And that's how we will take it, with baby steps.

As for our trip to New Mexico. Always fun, but the drive is awful. This time we went through Payson instead of Flagstaff which was actually prettier. But 7 1/2 hours of near desolate road. After praying that nothing happens to you in the middle of nowhere, you can sit back and appreciate God's majesty. It does humble you a bit. Especially when you are used to constantly having people everywhere in any major metropolis. That said we arrived safely. The kids had a blast. We got to hang out with family which we wish we could do more. The highlight of the trip for the kids was venturing up to Durango, CO to ride Thomas the Train. Dylan was in heaven because he is in the Thomas stage right now. When we go out he constantly has to have a Thomas the Train in his hand. Much to my dismay, he could watch the show for hours. So with all the seriousness of a child having his pinnacle moment, he just stared at everything. Occasionally letting out a squeal of delight and some intermittent laughter. It was a joy to watch.

That same night we went out camping near a lake in Farmington. The kids didn't know what to think of sleeping in the tent or cooking over fire. It was funny to watch. We then got to spend some time with some very gracious friends of Brandon's Dad who took us out to the lake on their boat and then back to their house (which was like a ranch, awesome!). The kids had an absolute blast. They had never seen such different things. It was a wonderful experience for all of us.

We have posted all of our pictures here (http://picasaweb.google.com/mc12041/June2010#). And there is video I will eventually convert too of Dylan riding the train.

Besides our trip Dylan has spent much of the summer indoors. The heat this time of year is unbearable here. And we are a little afraid to expose him for too long being that he is more susceptible to burning and skin cancer problems with his medications. That and he is naturally fair. Almost translucent fair :) The only times he really gets out is for doctor's appointments. Which brings us to the latest news. We went to GI clinic last week and they recommend that he stays on the 3 feeds until he can drink at least 16 oz of milk. This sounds relatively simple for most children. But Dylan hates (with a passion) milk. So far we have tried the Pediasure, Boost, Whole Milk, and 2% milk. He tastes it and then gives me a disgusted look. Hand me the drink and demands a different bottle. He drinks tons of juice/water/other items. Just not milk. What if he never likes milk? What if he is getting his required liquid/calorie intake other than that? I guess those are all questions for another visit. Next swallow clinic perhaps.

Tomorrow, we are off to see the surgeon about Dylan's G Tube site. Every so often we have to have the size of the balloon changed because he grows out of it and it gets loose which create a lot of scar tissue, which is painful for him. And next week it is transplant clinic here in Phoenix. We will be happy to see all of our cardiology family here!

I hope that everyone is having as good of a summer as us! Next time, follow up on doctors appointments, getting Alex ready for kindergarten (sniffle :( ).

Until next time...

Welcome Summer

2010-06-03T20:09:00.001-07:00

From May 2010

I am going to spare you the usual rants about the unbearable heat. Because let's face it, we are in Phoenix, and I am tired of being master of the obvious. That and this year I have a slightly different attitude. Sure we have had an unusually cool spring here that actually feels like I am sure spring feels like everywhere else in the United States. And that is without a doubt awesome and it puts us in a terrific mood. But the main thing is that this is the first year that has finally felt semi normal in a long long time. We are going to try to make the most out of this summer because it is the last before Alex starts school.

So we are going to now officially enter that era. Of school years. It seems to drag the memory back of when I was in school. It makes all of those days without school just seem like a really long vacation and now we are just back to it. Kind of weird like that. All the little memories attached to school. Or maybe now, I guess it did consume 2/3 of my life so far. Which makes one ponder some deep philosophical meanderings like are we too institutionalized, does the spirit NEED freedom or more order. How the heck do I not screw up my kid? All things that I am sure every other parent friend worries about. The things my non parent friends don't think about but no doubt will be affected by someday somehow.

On to lighter issues. Such as T Ball. Alex's first foray into sports. I imagined it just being kind of cutesy and maybe some of the dads being a little competitive. What I didn't imagine was us and the coaching staff yelling "ALEX, pay attention" about 15 million times. Only a slight exaggeration, I swear :) But I do know one thing for sure. Everyone knew Alex's name by the end of the first game. "Alex, stop laying on the ground", "Alex, stop throwing dirt in the air", "Alex, your glove is NOT a mask". It was incredibly hard to be positive and keep his self confidence in tact whilst still making sure he understood basic team dynamics and the rough rules of the game. Despite all of this, he did eventually get the rules, contribute to the team in a positive way and most importantly have a good time. He is even interested in playing again next year. I definitely admire the way this kid lets things roll off of his back. I hope that will carry him far in life.

Maddie just finished her first "class" type situation today. She finished her first portion of swim class. Bless her teacher for patience. Maddie would wander off the side of the pool. Continually bob up and down full of energy. Spit water out, at her teacher no less, which horrified us. But after a talking to she managed to stop that. Her teacher ever patient just says, "Oh she's a cute one", no sarcasm detected at all. She also had a great time and is anxious to get started on her preschool B class as soon as possible.

Dylan is doing great! He is down to 3 out of 5 feeds a day. Which is huge progress considering 3 months ago he was barely eating anything at all. I am so impressed with the strides he is taking. Today he ate by himself with a spoon. It was Sonic strawberry cream slush and by the end of the day he had finished the entire regular drink. So if we can sneak in some Pediasure/Boost/Milk little by little each day until one day he is drinking milk. That will be the day that the light at the end of the G Tube tunnel becomes a very real possibility. So that is our current mission. As far as Dylan's heart, everything is doing wonderfully, knock on wood :) His last ECHO looked great and his blood pressures and labs are also good. The only thing is that is white blood cell count was down so they took him off of one of his immunosuppresants. So I am sure we will keep an eye on that. The changes of dosages in medications is constant and I am sure will continue for quite some time. It is just the nature of the transplant beast.

Brandon and I are also doing well. I am finally getting over a bad bout of strep. I haven't been that sick in about 10 years. And let me tell you being sick sucks, being sick with 3 young children is as close to hellish as one can imagine. Thank God I had Brandon. He called in to work and just jumped in and started helping out. I am so lucky to have someone in my life who knows how to take over when needed. Because it was a high temperature of 103.7, chills, nausea, dizziness all coupled with "Mommy I need ______", "Mommy, ____ hit me", "Mommy, where is ______". You all know the drill. But now all is better. And I can get to the business of enjoying our excruciatingly hot summer as short as it is. Because for whatever reason school here starts the first week of August. So summer watch out, here we come.

P.S. Here are a few of the May 2010 pics for anyone who may have missed them http://picasaweb.google.com/mc12041/May2010# .

April Pictures

2010-05-03T22:22:00.000-07:00

Our April photos are done. We did so much this month. Pioneer Village, lots of Tee Ball games, and we celebrated Maddie and Dylan's birthday parties (even though Dylan's isn't until next month). We are also so thankful it has now been over a year since we came home from Dallas. Dylan is in wonderful health. Just click on the picture for a link to the rest of the photo's for the month.

Perspective

2010-04-07T21:14:00.000-07:00

As spring awakens everything around us (including my allergies :) ), I realize how very lucky that we are that we are able to enjoy all that life has to offer. Especially when we are lucky enough to go on a Hope Kids outing. I know I have spoken of this group before. It is for the families of children with serious disorders, many life threatening. They recently hosted an event at Bumblebee Ranch.

There is nothing quite so humbling as going to one of these. When you are there, you see kids with cancer, kids in wheelchairs, kids with trachs and feeding tubes. Yet no one is glum or depressed, feeling sorry for themselves. Don't get me wrong, I am sure they have their moments as I have certainly have had mine. But for that one day, everyone is there to have a good time, to forget that they are medical issues. No one stares as I feed Dylan directly through his belly. Everyone just smiles and understands because they have been there. It is amazing to exist in that moment. To see the triumph of the human soul. This in contrast to everyday life. Or more what seems like a former life that I used to live. Things that seemed so trite. Where there are some people who would sooner run you over than miss that yellow light. Or maybe that person that would cut you off in line because of their perceived important event they are going to be late for. Even people that are willing to practically start a fight over a spilled drink.

But that is really what is all is, is perspective. Maybe they will be blessed with a different perspective, albeit hopefully through not a tragic event. Not like one that had shifted the perspective of everyone at the Hope Kids event. I am not sure if tragedy and a broader perspective always travel hand in hand. If the ying/yang theory proves true with great pain and great joy. But I am all the better for having a glimpse into something greater. Thanks to Dylan, thanks to all these little miracles who are so free and happy. Glad they are able to take things moment to moment and appreciate things like a petting zoo with utter glee.

Amidst all the horse rides, hummer tours and the like, we got the opportunity to take an old west photo which I have posted here. I thought it actually turned out pretty well!

Regardless of perspective, I hope all my friends and family are getting to enjoy the beautiful weather outside as we are.

Until next time...

It's Spring

2010-03-22T20:09:00.000-07:00

Hello everyone. I am in a pretty good mood, although exhausted. It's spring here in Phoenix and I can't complain. The weather has been in the mid 70's to low 80's. And Dylan has been doing pretty well health wise. So what this means for us is get out and enjoy the weather before it's 100 plus degrees again. So here is the quick run down of what we have done over the past couple of weeks.

The weekend before last it was the Science Center, courtesy of Hope Kids. The kids had a great time. Especially with all the hands on stuff. I was a little nervous about this still being cold season and all. But luckily the worst that Dylan has had was a runny nose over the past two days, so I am counting my blessings.

Last weekend, we went to "Momma's Organic Market" or Mom for short. This was also fun, but I did like the market over by us at Beardsley and 59th Ave better for variety of organic produce. They had 3 produce stands, 3 bakers and 4 meat guys when we were there. This in addition to a variety of other interesting things. I am sure some of the vendors change from week to week. The only thing that we didn't have much luck on was the strawberries. I was kind of ticked that they went bad after 3 days.

On Sunday we went to the Botanical Garden. I've gotta say, I personally did not have high hopes for this. We were mainly going so that the kids could see the butterfly exhibit. I was thinking, desert landscape.... yeah! But it was pleasantly surprising. First of all it was a really nice way to walk for

2 hours. I was surprised at the length of all of the gardens but they did a great job laying everything out. The other surprising attribute was the variety of plants. I figured it would be a bunch of cacti with a smattering of thorny unappealing bushes. What I got was a lot of cacti, but with lavender, willows, an herb garden complete with a chili garden. That and so much more. Plus the landscape out there is really extraordinary. It is surrounded by several mountains. And the wildlife, we saw an eagle and two bunnies. So if you ever want to see something new in Phoenix and have a couple of hours to spare, check it out. I am glad that we did.

So there it is. Being a tourist in our own town while the weather is nice. Next week it is Bumblebee Ranch.

Until then...

Also.... I just thought I would add this picture of Dylan eating some ice cream. He is eating a little at a time and here is the proof. Keep Dylan in your thoughts/prayers/positive thoughts. Thanks!!

Belly Aches

2010-03-02T21:09:00.000-08:00

Another visit to the surgeon on Monday for some minor cauterization for Dylan and a button exchange.

After seeing the GI doctor a couple of weeks ago, we decided that Dylan needed the next sized button up. The doctor also wanted the granulation tissue cauterized. When you have a button (stoma) for feeding, tissue tends to puff up around the site and grow. This happens because the stomach acid does not mix well with the outer skin layer. I assume kind of like a canker sore. But on your tummy. Ouch! So we scheduled the appointment. And on Monday we went in.

The surgeon was kind enough to replace the button. Normally this is something that I would have to tackle on my own. You can imagine that this tissue would be very sensitive. And it is. Dylan screams out and starts crying hysterically until he just holds his breath and only stops to scream again. It is the worst thing I personally have had to do to him, and I have only done it once, with assistance. Hence my sincere gratitude for our kind surgeon taking this one for me. So myself and another nurse held him down while she replaced this. We decided not to do the cauterization because it would be too traumatizing for him. So back to the silver nitrate. Silver nitrate has been offered to us in stick form, gel form and now pad form where you apply it to the overgrown tissue and it does the cauterization for you over time.

So between this event and him breaking in both of his incisors, he hasn't been in any mood to eat over the last two days. Which I totally understand. But it is still frustrating. To be making so much progress. He has been eating approximately 2 ounces by mouth for 3 feedings day. Which is about half of what my 2 1/2 year old daughter eats to give you a good standard to measure against. I know we will be back on track in no time.

That is our quickie update for now.

Until next time...

Doing my part

2010-02-21T20:34:00.000-08:00

Well now that most of the “hard part” of the transplant experience is over. Fingers crossed, knock on wood, turn around three times and chuck salt over my shoulder. I feel it is our family’s duty to spread the good word and do a public service announcement. About organ donation that is.

So now that you have seen the drama first hand on my blog, I will share some of the facts I snagged from the Donate Life campaign.

· Anyone can be a potential donor.

· All major religions in the United States support organ donation and see it as the final act of love and generosity toward others.

· If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ can only be considered after you are deceased.

· When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, not your financial status or celebrity status.

· An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care, respect and dignity.

· There is no cost to the donor or their family for organ or tissue donation.

· Signing a donor card and a driver's license with an "organ donor" designation may not satisfy your state's requirements to become a donor. Be certain to take the necessary steps to be a donor and ensure that your family understands your wishes. You can do that by visiting http://www.donatelife.net/CommitToDonation/index.php .

I would also like to add if you are using the excuse of “God made me one way and I am going to leave that same way”, then for goodness sake I hope you have never gotten your teeth filled, a mole removed, a tattoo, a piercing or some cosmetic procedure performed. Given, not the same as organ donation, but you are leaving your body differently than you were born into this world.

This is a procedure that is certainly not taken lightly by any recipient I have ever meant. We struggled mightily spiritually on this front as I know many other parent’s/recipients have. The last thing that you want is to “benefit” from a disastrous situation.

Not only is this not taken lightly spiritually, but physically/medically speaking as well. I know at least for us, transplantation was the very last option. We worked closely with our cardiologists to get the best treatment plan to try and cure him with medicines. I explored homeopathic options. I wrote doctors around the world about stem cell treatment programs. But in the end, after exploring every option possible, we knew that this was really our only option. So it was with a heavy heart (literally, since he had dilated cardiomyopathy) that we walked into this. And what an experience it has been, I wouldn’t trade it for the world. But know that a life of some heavy medications and close monitoring is not preferable to other treatments that would lead to a presumably normal life.

So in closing with the myths, no – hospital staff are not eagerly waiting your impending doom because you are an organ donor, no- some tall lurpy weird guy does not carry your organ around in the igloo cooler like in science fiction flicks, no – when the second coming arrives you will not rise all zombie like groaning because you may have parts missing you might need. I am not entirely sure of the last one as I have not actually witnessed the second coming, but I think it is a pretty good guess.

And in all seriousness, a lot of people die waiting for organs that might be available if only the proper documents are signed and family are notified beforehand.

If you want to give in other ways, there are options for that as well. The Children’s Hospitals are always looking for donations. We personally benefited from Phoenix Children’s Hospital (which saved Dylan at birth) and later on Children’s Medical Center in Dallas (which gave us the gift of life). The charities that helped us become medically debt free as of last month are:

COTA (you can give to Dylan’s lifetime fund @ http://cotafordylanthomasm.com/ )

Nick and Kelly fund (http://nickandkellyfund.org/)

Charles Tillman’s Cornerstone Foundation

Kate’s Cup/North Ridge Community Church

…and all of the wonderful help from our friends and family and my husband's colleagues at Republic.

You can give to any of these wonderful organizations and help a family going through what I promise is worse than any nightmare they could’ve imagined. When you hear that you child needs this you just get so angry and scared. Someone might as well have said a meteor struck your house. The disease that Dylan had was 7 times rarer than winning the lottery. Lucky us (*insert sarcasm*). So to know that you at least have some financial backing is huge. Especially considering the psychological mountains you have to climb.

Thanks for listening to our personal (and hopefully yearly) public service announcement about organ donation. I have also included a picture of my brand new Donate Life License Plate. I am so excited I get to spread the word, yeah!! (Only $25 in AZ)

Also if you have any questions, feel free to ask me. I will answer anything regarding this as long as I know the answer. And if I don’t then I will find someone who does. I will even answer questions you might think are weird. I believe strongly in educating the public. And you all know I am very open and honest :)

Until next time…

PS Dylan is doing great! Exciting things are starting to happen in the GI/feeding area. I will probably have to start posting weekly again for awhile. I hope you missed me!

One Year Checkup - Post Transplant

2010-01-21T21:28:00.001-08:00

Last Wednesday we made the flight to Dallas to visit with friends and family. But more so that on Thursday we could go back to Children's hospital so that Dylan could have his heart cath and biopsy.

Thursday was a long day. I always look like a bag lady when I am on trips like this. I have to lug around a diaper bag on one side of Dylan's stroller and his feeding supplies on the other. I also always drag along the laptop just in case I get bored, which never happens. I always run into an old friend and start chatting away. And sometimes I meet a new friend. Someone who's child is just beginning on this journey and they just need someone to talk to. Either way, a very happy distraction.

So I waited and waited and waited. Finally about 4:00 pm Dylan is in the recovery room. He is hooked up to the all familiar monitors and drowsy from the anesthesia. The only difference is that he is in there for a checkup. This is part of his recovery. Scanning around the other recovery rooms, which are just little areas separated by curtains there are children in real pain. Crying, sometimes screaming. It is still painful to listen to even after all we have endured. I feel for them and especially for their parents. Dylan barely whimpers. He just smiles knowing he is there temporarily.

About an hour later he is placed in another recovery room, this time with a door. We are about 2 hours from release if all goes well. Thankfully this time it does. Even though I did get a good chewing out for Dylan being dehydrated. Which is definitely not a good thing if you are going under for anesthetic.

Here is the backstory on that really quickly. Airplane rides dehydrate people. The air is recirculated and generally dry. On top of this, Dylan throws up his milk if he drinks it on the plane. This is as true today as it was on his first plane flight. Sometimes Dylan throws up while at the airport. So given that our plan flight will be at least 3 hours and that he will not eat while in route to or from the airport which deducts another hour, one can safely assume that he will miss one or two feeds that day. I give him a little extra later on to make up for this loss, but it obviously does little to help. So here is the opportunity that I missed. I need to feed him at the last possible opportunity that he has to eat before his cuttoff for the anesthetic. We all know that before surgery we may not eat X hour before the procedure. This is true with Dylan as well. The normal cutoff is midnight. So after being on a deficit of food all day from the flight and subsequent travel he is also denied food by me so that he can prepare for his surgery.

So now after getting a good talking to from about half a dozen people (I felt a little like Office Space guy and the TPS reports) I will definitely without a doubt make sure he gets his fluids up until the moment of cutoff. Further more I will feed him more before flight. I am certainly not complaining about the medical staff. They are without a doubt right on their assessment. It is just one of the long list of things that I must remember for care with Dylan. Something most people just take for granted with the other kids. My other kids would drink something on the plane without getting nauseous. Ah well, such is life.

So the next day, Dylan is getting back to his normal self. Albeit very cranky. Understandably, since he is probably still uncomfortable from the previous day. He has also had it with his stroller and decides that he is going to walk everywhere. So we wait at the hospital, until we get the final word about 1:00 pm. He is rejection free. We are successful after year one! Yeah! I don't think there are enough words to express my joy. My gratitude to everyone who has gotten us to this very moment. It took a team, almost a small movement to get us there. But by some kind of miracle there it was personified in one little boy.

So if I haven't said it a hundred times, I will say it again. Thank you, thank you, thank you to all that have been there for us. It is all worthwhile in the end. And if I did have to sum it up in one world.... Amazing.

P.S. The picture is on the way back from the airport. Maddie and Dylan have never been so happy to see one another.

Who knew the holidays were stressful

2009-12-23T22:09:00.001-08:00

Ah the holidays. That magical time of year when you have about a 100 errands to run, your to do list expands exponentially and your kids now expect you to have literal superhero powers. Because who else can talk on the phone, bake cookies, contain major diaper upheaval and keep their sanity at the same time. If you got cookies from us you are probably now concerned that you saw diapers and cookies in the same sentence. But fear not, us mom’s with superhero powers also have super hand washing abilities and handy anti bacterial gel that travels everywhere we do!

So many times I have had great blog topics I imagined writing. But then the standard interruptions always come into play. In fact as I am writing this now my daughter is half asleep whimpering because she caught a sore throat from her brothers. I am typing as quietly as possible not to wake her so that I can finally update my friends and family on what the heck we have been doing this month.

Anyhow, this month has been full of our typical ups and downs. Dylan is finally starting to show improvements in his eating. After he was taken off one of his medications he suddenly became slightly hungry. Coincidence, possibly. But welcomed nonetheless. So now I have the task of keeping a food log. Something all of us dieters are familiar with. But so unlike our old dieter food log because I am desperately trying to fill him with fat laden food. If only it was a good thing if our food log was filled with chocolate, butter and mayo. Paula Deen would be proud.

The major GI issues still seem to reappear when he is sick. We finally figured out to vent his stomach before feeds, which means to put a tube in his tummy and let whatever contents are left in the stomach come out, usually into a diaper wrapped around the tubing. We then measure the diaper to see how much is left in his stomach therefore determining how much he is actually digesting. When he is sick he only digests 3/4 of what he normally takes so then we have to give him an extra feed via tube late at night while he is sleeping. Thankfully this method has kept us out of the hospital and him continuing to thrive despite having two minor colds this winter season.

Two weeks ago we were also able to get him evaluated at one of the only team therapy clinics here in Phoenix. They determined that it was probably equal parts stubbornness and physiological factors that were keeping him from eating. So they gave me a detailed report to pass on to our therapists for guidance on his eating. Basically stating that he needs to be introduced to as many flavors as Dylan will allow. We are not to force feed as this will most definitely cause more aversions. We are also to try and use positive descriptors for feeding experiences. So if he doesn’t like something, we are supposed to say “That was different”. A little hard for me since, if you haven’t noticed by now, I am highly sarcastic. But I can do it, if he will eat, I can do it.

Also last week we found we were approved for nursing respite. We got our nurse this week, she is so sweet. I guess the reason for approval was not transplant alone or GI issues alone, but combine the two for a potentially explosive medical situation and you are suddenly approved for nursing help. Which we are certainly thankful and blessed to get. So two days a week I have someone to help me while I take the other two grocery shopping, to the library or just get some one on one with the other two in general. Everyone wins.

And finally this week is Christmas. Of course the kids will be spoiled beyond comprehension because we are all trying desperately to make up for last year. Last year will always be unique and an adventure in my mind. But this year we get to all experience a Christmas together at home, together. I joke about the holidays being hard, but we are really very lucky. I am so, so thankful for this. And again so thankful to everyone that contributed to get us here today. There are lots of stockings in this world that go empty because life took their family in a very different direction. And I never want to forget that.

Ending on that note, I hope that everyone has a very Merry Christmas together. I also wish everyone a healthy, happy and prosperous 2010. And by prosperous, I am stating not just wealth, but mind, body and soul too.

Until next year…

One year ago today... | Dylan Thomas McQueen

2009-11-28T20:30:00.001-08:00

I find myself a little nostalgic this weekend. One year ago today we were frantically making plans to get Dylan into a heart transplant center. He had been in the ICU the week prior. We were allowed to take him home for Thanksgiving under the condition that he would be accepted into a transplant program. It seemed an overwhelming task. I had so many questions in my mind. How would we get there when he was so sick? How does one get accepted into one of these programs? If we were accepted what would we do with our other two children? And on and on and on.

So with blind faith you just put one foot in front of other. Hoping, praying, and willing things to go in everyone's best interest. It would take a miracle to orchestrate all of this successfully. Never mind he could die at any moment. Or that we didn't have the money for any of this. Or that our family might be separated. I was literally paralyzed with fear. You just have to let go and trust that everything will be ok.

This year is a very different story. Dylan is a very vibrant healthy little boy. Somehow everyone came together with precision timing despite all of the chaos. Somehow our family managed cohesion despite temporary separations. Somehow Dylan managed to thrive and excel.

So this year we are very thankful for all of the people we have been blessed to meet over the past year. We are blessed with the dedication of our hospital staff. Dylan's doctors, nurses and therapist have not only been there with practical medical advice, but also a comforting hug and kind words when the situation looked hopeless. Family and friends who stepped up to the plate with help when I was sure I couldn't make it through one more day. And most surprising to me, the help of strangers. Whom I now consider friends. People who offered a place to stay or a bite to eat when there was neither available to us.

I am still amazed at the resilience of my family. The long separations for my husband and I, that I was sure would break us, only brought us closer together. The mature inner strength of a then 3 year old Alex, 18 month Maddie and 6 month old Dylan. The understanding and willingness to accept the situations presented amaze me still today.

So on this Thanksgiving I am very thankful for the adventure that this last year has been. It has given us a unique opportunity to grow that could never be replicated. May our future years be equally insightful.

Until next time...

P.S. Dylan loves a parade. I kept trying to get a good picture but would miss it. He would just stare and dance at the Thanksgiving day parade on TV. It was the cutest thing. I only hope I have another photo op. It was priceless.

Already tired of being a recluse

2009-11-10T20:15:00.000-08:00

So it hasn't even been a month and we are already getting stir crazy. We all haven't been out of the house much. We get the kids out to the park once a week. And I still take Dylan to his doctor's appointments. But other than that the kids pretty much stay home. All in the name of staying healthy leading up to Dylan's one year anniversary.

Being locked in the house with 3 kids under 4 provides some unique challenges. First of all they have lots of expendable energy they need to let off. So they run in the back yard and around the house. All the while screaming. And especially loud if I happen to be on the phone. There are lots of messes, things to fix and clean up. The trick is .... organized activity or more aptly organized chaos. I try to have things printed up for them to do in advanced and an overall theme for the day. Other wise they will gang up on me. Alas they have already figured out there are more of them than me and they can overpower quite quickly :)

Don't get me wrong there are lots of benefits to being in with the kids too. They do incredibly sweet things that I would never catch if we were out and about. And I am quite thankful that Alex isn't in preschool yet. I have gotten to spend a lot of one on one time with him. Just getting his thoughts on life is great. The introspective mind of a four year old is so funny and amazing. Sometimes they will all just tackle me and we will do group hugs. I get to play Martha Stewart and make crafts and back cookies. Even though these things will not go on my resume and I may even be looked down upon in an interview for. These moments, they are all worth it. Timeless and unforgettable. I am blessed enough to have this opportunity that a lot of moms don't get the chance to enjoy. And I almost missed had it not been for circumstance. Life is funny that way.

If there is any news over the last few weeks it would be the placement of Dylan's G-tube mini one. So what is the difference you ask. Well this is a tube that I change myself as Dylan grows. There is a picture of the standalone product (not in belly) here http://www.appliedmedical.net/amtminionebut.htm. The bottom part which sits in Dylan's stomach is filled with fluid. I would do this through an entry port on top of Dylan's tummy. This keeps the device in place. So as Dylan grows I would have to replace this device with larger ones because the muscle and skin tissues would also expand over time. So once I week I have to deflate the lower part pull the button and check if everything is ok and then replace the button and reflate. Is reflate a word? Well you get the idea.

That was the practical explanation. The truth of the matter is that I have to take a foreign object out of a oozy hole in my babies tummy. Yes, it grosses me out a little. Especially the putting it in. Yuck. And then after the feed stomach acid oozes out around the sides of it and makes little booger type growths around it. I am constantly cleaning this thing. And yesterday, he yanked on it and although it didn't come out but it did ooze blood which freaked me out. I called the surgeon's office where the staff there reassured me this was perfectly normal. Only in G-tube mom's world is something like this normal. For everyone else, frickin nightmare.

Well, now that I have had my rant (thanks for listening). I am sure I should've went into the medical field. Or maybe not. If this stuff is outpatient care, I can only imagine what goes on behind closed doors that I don't know about.

Beyond all that, we are still in search for a feeding specialist. Maybe lend us a prayer or some positive thoughts that Dylan will eat just a little (3 bites + please) of Thanksgiving dinner. So with that, that is most likely when our next blog will be. Let's make a date for after Thanksgiving.

Until next time...

P.S. We had a great Halloween. I will be posting some pics in the next week or so to the Picasa site. Keep an eye out.

Staying in for flu season

2009-10-15T20:39:00.000-07:00

Well I have pretty much decided to make the blog every 2 weeks instead of every week. We are pretty much locked in for flu season to keep Dylan safe until he hits his 1 year anniversary for his transplant. Which means there won't be as near as much exciting stuff to report. Even if I exaggerate :) But I do manage to find stuff every two weeks, even when we are locked inside the perimeter of our house.

What does that mean for us? Well it means that we can still go to outside non crowded events like the botanical gardens or the park. But we are avoiding enclosed, crowded environments if at all possible. This is one time when I actually feel lucky to be in Phoenix. There is plenty to do outside in the winter.

We are also trying to limit or eliminate eating out. Most people I know who work at restaurants are hourly and they do not stay home when they are sick. Not because they want to sneeze and cough all over your food (which I have been assured does happen anyways), but because they can't afford not to go. They need the money and there someone else waiting in line for their job. Ergo, bad times for some lucky patron. Not me this year, thank you.

So sad that in our world sick people can't stay home. Grrr, that is a whole other lecture I could on for hours about. Regardless, we are trying to take this whole flu season in stride and try some new/free/cheap things we wouldn't normally try. Let's see what comes of it.

This past weekend we did manage to get out for a little while. On Saturday was the Hope Kids event for the kids. We have posted the pictures here (http://picasaweb.google.com/mc12041/October?authkey=Gv1sRgCPH0we6LkvL1rQE&feat=directlink). The kids didn't get a nap that day so they lasted about 2 hours before we had to leave. But they had a great time on the big bouncers and riding the ponies. And I always love the idea of the petting zoo. You lock a bunch of toddlers in with a bunch of scared baby animals. And then the toddlers just chase the animals while everyone is screaming "Don't run", " Don't grab the animals", "Don't ...." well you fill in the blank. Hilarious.

And then on Sunday we got to go back to see a Cardinals game. After last season, I felt somewhat cheated for having missed their only amazing season ever. So it was nice to get out and have a couple of beers and enjoy the game. It was me, my husband and the brothers in law. Good times. You see the look on my face in those pictures, it is called "carefree". That's a feeling I never thought I would see again :)

On another note, we are finally finished for sure with the donor letter. That was the hardest 2 pages I ever had to write. Not only do I have the constant usual interruptions from the kiddos. But you also have the pressure of trying to make someones else's loss sound semi eloquent and not stomping on their feelings while telling them how thankful your child is still alive (<- that wouldn't have made the final cut for the letter).

Now that is done and both Brandon and I have written our own portions, I think we managed to walk that tightrope without falling off. I guess only the donor family will be able to tell us that for sure. So as soon as I get a confirmation on the address to send it to (FYI: we have to send our letter to a broker and then they deliver it to the donor family, there is no direct contact until both parties agree that it is alright), then I will mail and pray that it gives a little comfort to this family. And hopefully they will write back. I am so very curious as to the little angel that is now a big blessing for our son.

Until next time...

Family Picture time!!

2009-10-01T20:18:00.001-07:00

It is family picture time again courtesy of Hope Kids. Hope Kids is an awesome group that helps sick and recovering kids with all kids of events. This last weekend they held an event for all Hope Kids families for family portraits. We got full rights to all of the pictures, so if anyone wants copies let me know. If anyone ever wants to contribute to Hope Kids cause click here http://www.hopekids.org/ .

So as for the pictures. A lot of great ones. Thank goodness for talented photographers. And with three rowdy kids. I had to include the one of Dylan getting sad, it is just one of those classic lip pushing out moments that makes me smile in retrospect. Of course at the time it is really sad.

Other than that not much to report. Which is good! More next week on Dylan’s new tummy peg and our cardiology visit here in Phoenix.

Until next time…

Welcome Fall

2009-09-23T22:29:00.000-07:00

Even though when it is officially fall in Arizona it still is excruciatingly hot. We like to pretend. We all put up our fall decorations and attempt to wear jeans when it is still 100 plus degrees. I guess the bonus is that I can take the kids outside in the morning and they won't burn themselves on the playground equipment. Ah, now that I have complained about the seasons or lack thereof in the desert, I will move on to other fun stuff.

Like Brandon's birthday. He decided it would be fun to let the kids plan his birthday for him. So Alex picked out the cake (Madagascar sheet cake) and he picked the place (Chuck E Cheese) and we just went with it and had fun. It was my first time at Chuck E Cheese. I can see the appeal for kids. But it was so loud in there. The scary animatronic Chuck E screams his monologue at you from the front. All the while this video montage plays in the background with other various puppets and meaty cheesy boys videos. So if you can get past that and the occasional screaming of some random kids in the background then I guess it is pretty fun. They had a great time playing all the games. And when Chuck E was performing, Maddie ran up to the front and starting dancing, which for her is jumping up and down. Really cute. And Dylan was smiling, laughing and doing his little high chair dance. Also very cute. So after a couple of hours of piling on the pizza and sugar drinks and dessert we all went home and the kids went right to sleep.

So that has been the highlight of our last two weeks. Things have been pretty calm and that has been a nice change. I am sure they won't stay that way for too long. But we have gotten used to the feast or famine pace of life.

Until next time...

P.S. Maddie looks a little concerned about the ride :) And some good video of the kids jamming out.

Back from clinic

2009-09-10T20:21:00.000-07:00

A couple of weeks after surgery and a few days after clinic, Dylan is doing great. He is even eating tiny amounts of food. He ate half a biscuit yesterday and some ice cream the day before that so we are thrilled to see any interest in food at all.

So now what? Well in a 3 weeks we get to pick out a new peg for his belly. I guess that belly pegs are kind of like earring piercings. In the way that you start out with the basic starter studs in your ears (or where ever you are pierced, no I don't want to know where that may be :) . Well in the belly they have this very basic piece of plastic. I guess there are more complicated versions of this with locking devices and such. And then a month after that they sedate him, replace the peg and home we go! Very exciting.

I am still have tummy issues, but I have been back and forth to the doctor trying to work things out. It is probably mostly stress.

So the big news besides a clean bill of health is that Dylan is walking. Hooray! At the current time I am having issues posting video to blogger, but I am hoping that by next week I will get it done.

Also the Dylan's baby book is finally done! You can find the best book I could build under 20 pages here (http://www.scrapblog.com/viewer/viewer.aspx?sbid=1493888 ) I hope I did the experience justice. If you want a real tear jerker, then watch it while listening to Little Wonders by Rob Thomas. Enjoy.

Next week, I will be posting some more pictures. Getting some more video transferred from this last year and hopefully starting on a web page project for other transplant families. Exciting stuff.

Until then...

Dylan is recovering very well

2009-08-31T14:48:00.000-07:00

I however came down with some horrible bio-germ unleashed on me while spending time in the hospital with Dylan. So that explains the lateness of my update. I hope that everyone understands :)

And now for the quick recap. Dylan had his surgery last Thursday. Everything went very well. He was in and out of surgery in 30 minutes. His Gastroentronologist and Pediatric Surgeon were just awesome. We were extremely pleased with the procedure.

In recovery, I got to see his new G-tube. I will be posting a link to all the pictures should anyone want to see them. I understand if not too. It is a little gross. It is basically a plastic tube that fits into his stomach. Then I fit another tiny plastic tube in there which allows formula or milk to flow through with the assistance of a pump/gravity bag. Occasionally there is this brown gooey leakage that accumulates around the tubing. So you have to keep that clean constantly. My research tells me this substance is stomach acid. Which is apparently really bad for your skin.

He was out of recovery in about 2 hours. Very thankful I called the night before and talked to the person in charge of placing kids in their hospital beds and explained Dylan's unique situation. Right now at Phoenix Children's they are building a new addition and are often very crowded. Good because their services are in demand, but bad for crowding. So because of this most patients are still two to a room. Needless to say, there was a little girl waiting in recovery for 3 times as long as we had been. I can't wait until they get their new building. It will be awesome for everyone.

The first night was a little hard. He threw up a couple of times. He had a temperature most of the time. So because of this he was on some pretty good pain meds. I felt awful for him. I can only imagine. The worst stomach ache ever and just multiply that. And waking up with a big thing in your stomach. How does a baby process that? I guess he will tell me what his therapist says 20 years from now.

So we had to stay the second night, which I was upset about, but understood entirely. That was the entertaining night. Everything appeared to be going great. His temperature was going down. He was still a little lethargic and fussy, but to be understood. So I got awakened at midnight by the worst stench I have ever smelled....ever. It was like no other diaper I have ever seen, nor wish to see again. I won't describe it here, but it was vile. Did I mention I was starting to come down with my bug by now. So I am nauseous already and then I have to change this ... thing. Ugh, anyhow I had to have a nurse come in and assist me. And then she had to have someone come in and assist her. That's a gross diaper. So by the time we change his diaper, clothes and give him a sponge bath, I am exhausted and ready for some sleep. The nurse ask me to hold him while the change the bedding. No problem. And then while I am holding him he throws up all over me. On my only set of pajamas. Because I was supposed to be there one night. Grrrrrr. So now we change his clothes again and time for another sponge bath. And I get to go to bed in a hospital gown. Fun stuff. What we do for our kids I spose.

So the next night I am fully taken over by this bug. Thankfully we are finally released at 7:00 pm at night. I pretty much take Dylan inside, take a bath because I have been wearing the same clothes for two days and I feel disgusting and then I just crawl into bed with Dylan. And that is where we both stay for awhile. Weary, but thankful this part of the adventure is over.

That is the quick rundown. I am still feeling pretty yucky. I won't go into details.

Until next week....

Next week, Labor day fun and we have clinic in Dallas, plus follow ups with Dylan's pediatrician and pediatric surgeon. Busy for us. I guess I better get well fast.

Surgery on Thursday

2009-08-25T19:56:00.000-07:00

Hi all, just a quick note that Dylan's surgery will be on Thursday of this week. So I am going to try and post the blog after the surgery on Thursday or Friday so that I can give the full story. Also, Dylan just started walking this week. So I have to get some video of that tomorrow to post at a later date.

Keep posted for more news on Thursday/Friday...

Therapy has recommenced!

2009-08-18T21:12:00.001-07:00

This past week has brought back our therapists. Yes, all three. We are very excited about this. Because in Arizona, apparently there is a ridiculous demand for these services. We are very lucky to have gotten them so quickly and in home therapies on top of that. I have heard of people being on the waiting list for a year. Nonetheless, we had Occupational Therapy come on Wednesday, Speech Therapy come on Thursday and Physical Therapy on Friday.

All three were more or less introductory sessions. But we certainly did get a good start from it. From Physical Therapy session alone we got Dylan to walk 8 steps, on his own! That is certainly a huge step. Unfortunately from all of this we did not get Dylan to eat. He has not eaten at all in a few weeks, so we are getting highly concerned about this. Tomorrow is our meeting with the surgeons. I am actually starting to look forward to getting this G-tube now. If nothing else, just to eliminate all doubt as to what is going on with his little appetite. So here is to tomorrow, and one step forward to finding out what Dylan's eating issue actually is.

So this blog entry will be short as we have to get up early in the morning and go to this appointment. That and I am going to attempt to get Dylan's baby book done this week. Which will also be available online, I will post the link next week!

Until then…

Reminders at the Children's Museum

2009-08-11T20:04:00.000-07:00

So this past week has been mostly routine, which is great! Because we know we are looking at at least one short hospital stay on the horizon. We always try to make the most of the in between time because you never know what is around the corner. Live life to it's fullest right.

With children you can't live life to its fullest by bungee jumping or sky diving. You just make time for things that you don't think you have time for. There is a youth museum in town aptly called Arizona Youth Museum or AMY for short. It is in Mesa... which is on the other side of town. So you are thinking big deal, you took a drive across town to let the kids run around. Well, like in any other big metropolis a drive across town can be a long way. In this case, and hour drive with

no traffic. In the past, this would have deterred me from going at all. These days, although it is still a pain to drive an hour there and an hour back (with young kids mind you), it is all worth it to see the kids get to enjoy a little art and have some quality family time with the kids.

The place is great for small kids. Most the exhibits are hands on for kids. They have activities pods at every exhibit so they can jump in and try different techniques. We made several different crafts while we were there. And Dylan even got to get out of his stroller and crawl around. He was so happy he was squealing and hopping up and down on his tush.

The reason that I wanted to go on this particular weekend was because it was one of the last weekends they were going to have an exhibit on the "Beads of Courage". You can see an example here. It is a really neat program for kids in the hospital. Whenever they go through any procedure that is unpleasant they get a bead. I still have to get Dylan's bead for his transplant. But he earned one every time he got blood drawn, and IV stick, his muscle biopsy. The list goes on and on. If you are ever interested in helping his program just Google "Beads of Courage" and then there will be information on how to help there.

This week approaching is very exciting. It is Dylan's first week with his full therapy staff. He has Occupational Therapy tomorrow, Speech on Thursday and Physical on Friday. He also has all of his labs tomorrow. So our new routine begins. We are still having eating issues and therefore will be meeting with the pediatric surgeons next week. Stay tuned for news next week!

Until then...

Hello, Goodbye

2009-08-04T20:37:00.000-07:00

I guess I will start with last week. Pretty uneventful for the most part. But sadly, Alex's last week at swim lessons. Alex loves the water. Like many other kids, he could stay in there all day. The only thing that equalled his love for swim lessons was that of the love a four year old has for their swim teacher. He would talk about her in the car. Ask when we could see her again. Pretend to be talking to her on the phone. Tell us elaborate stories at the dinner table about them playing at the pool. It was really cute. But even after telling him many times that last week was his last swimming week, it really didn't sink in for him until this week. On Monday he asked why we weren't going swimming. What could Ms. Kelly possibly be doing without him? I explained, again, that swimming was over and we couldn't go back until next year. Ah the sadness that came over his face. I assured him that he would always have the fun memories of singing songs, floating on his back and learning to doggy paddle. He seemed content with that.

Last week Alex got to say hello to the Dentist. It had been far too long since I had been to the Dentist and I was a little afraid myself. But luckily I had no cavities and a great checkup! I guess those vibrating toothbrushes and flossing work after all. Alex also had a great checkup. They counted all of his teeth, he got X-Rays and they brushed his teeth really well (they tried with the polishing tool, but he freaked out). Thankfully there was no screaming and crying. Because we have all heard that kid in the back of the dentist office whilst we are waiting in the lobby. Scary.

Unfortunately much of the weekend we weren't saying hello to Brandon. They were implementing a huge project at work, so he had to work almost all weekend. Which left us lonely for him. Fortunately he was able to take Saturday night off of work to go to the Hope Kids Luau. Hope Kids is an organization for kids with medical issues. Brandon got us involved by volunteering for them while we were in Dallas. He was sad he was without us and wanted to give back somehow. This was the rest of the families introduction to the group. And we were very impressed. What a great group of kids. For once, Dylan didn't feel out of place at all. Not that he notices stares most of the time, but sometimes I do. We got to meet some other families in similar situations. The kids got to go swimming (yes, Alex was still asking for Ms. Kelly). And the kids got to go in a firetruck. Did I mention the Fire Department volunteered to cook for the event and let kids have tours of the firetruck. Pretty much a little boys dream. So needless to say we all had a great time.

Lastly, today we had Dylan's barium swallow study and upper GI. This test was rather interesting. First they did the upper GI. They laid Dylan on this board and strapped him down. This board rotates in what we were joking was the rotisserie baby. While Dylan is strapped down, they inject barium into his NG tube. Then the X-ray picks up the barium (which looks like dark dye in the X-Ray). You can see the stomach and then how the stomach churns it and how it starts to move into the intestine. Excuse me if I seem unemotional. I have learned to detach myself when it comes to these procedures or else I would probably be a hysterical mess.

Next was the barium swallow. He was not strapped down for this portion. He was in a sitting position. We fed him the barium in different consistencies. They use a thickning agent to make the liquid gel. You can make it like pudding, honey and other variations. They did this and had Dylan swallow several different consistencies. The good news is that he is definitely NOT aspirating. We will still probably be saying "hello" to the G tube soon. I will find out later this week, so stay tuned.

Until then...

P.S. I will probably be monetizing the blog soon. Blogger ( the site that I am using to maintain my blog) allows you to make money from your blog by allowing rotating ads. If your readers click the ads then that generates a cent here and a few more cents there. It adds up after awhile. I am not doing this because momma needs a new pair of shows. Although that would be nice...sigh. I am going to put the money in Dylan's COTA fund so that we can have a few extra bucks for medical expenses. So when you see the ads on our blog (mcqueenclan.blogspot.com), click for Dylan! Thanks in advance.

And the eating woes continue…

2009-07-28T21:02:00.001-07:00

Well for about a month now we have been battling the reality of having Dylan get a G-tube for his new method of feeding. Actually longer if you consider pre transplant. The tube that you see in many of Dylan's pictures or in real life is called an NG tube. It goes through the nose and to the stomach to feed the patient. A G-tube goes directly into the stomach via surgical insertion. From my readings I have ascertained that an NG tube is only supposed to be in place for 2 – 4 months. Maybe longer in some situations. Dylan's feeding pattern has been erratic at best. Sometimes we can ramp him up to eating most solids for his age and drinking a little bit. Sometimes he doesn't eat or drink at all. So every time that we are about to be in a position to get rid of the tube all together, he gets sick and doesn't eat at all and needs the tube more than ever. So the only thing that is certain at this point is that this up and down pattern of eating will continue and therefore he will very likely need assistance eating for awhile longer. Because of the risks that go along with NG tube, which include placing it incorrectly in his lungs or ear infections, G-tube placement is being recommended.

So Dylan needs a G-tube, now what? Next week we have a barium swallow test. Where he drinks barium and they see on X-ray if he is breathing it in or drinking it all. This is important because if he is aspirating then that will lead to longer treatment with speech therapy. So after that I have to speak with the pediatric surgeons and give them the information from cardiology so that they can determine if any extra precautions need to be taken. Which I have been assured they shouldn't have to. If they agree we set the surgery date and he should only be in there overnight. Then life goes on with a G or Gastric tube.

Although this feels like a huge failure to Brandon and I we are coming to acceptance. We have offered him every kind of food imaginable. In order to get him extra calories we dip food in butter, chocolate or anything else fattening that tastes good. The eating plan that I have followed my whole adult life to get healthy I am now doing the opposite to feed Dylan. Luckily I don't have that much time to eat myself. Because if I were eating what the kids eat, I would blow up 40 more pounds. The other struggle is trying to keep it somewhat healthy. We are managing somehow.

So there is light at the end of the tunnel. Last week we were notified that we were approved for in home Occupational and Speech therapies that start this week! Physical therapy starts next week. We will be getting expert guidance again to help Dylan get that leg up to his next stage of development. Also after Dylan's swallow study last week with Gastro in Phoenix, they have concluded that he needs intensive feeding therapies. So he will be receiving an additional 3 therapies a week of speech and occupation co treating. Dylan's eating issues definitely dictate a philosophy of getting more people involved and therefore the problem will be solved. Although I am about to get a lot busier, I think it will be worth it in the long term.

I will keep everyone updated as this will be our new reality over the next 3 – 4 months. As far as the rest of the visit went, his heart looks great and he is doing fine. He got taken off another medication as well. We also got changed over to visits every 2 months. We are extremely excited about all of this. Maybe we can truly start looking forward to Dylan being somewhat normal in this area. We always knew that transplant wasn't the end of all our woes. It was just the biggest hurdle to cross. Hopefully we can come across the finish line with the rest by the holidays. We can only hope and pray J

Until next time…

Finding Space in a mirage

2009-07-21T21:25:00.001-07:00

So first off, it is hot here. Yes, I am aware that I am in Arizona in July. I don't think the word hot does this heat justice. A lot of people think 115/105 what's the difference. Just like the difference between 10 degrees and minus 10 degrees, right. At 105 it is hot and miserable, but you can still be outside for a brief amount of time. At 115, you run from building to car to building for fear of spontaneous combustion. We have to carry around ice packs to put in the kids car seats so that the metal latches don't burn their sensitive skin (and yes, that has happened). You actually sweat in a car with fully functioning air conditioning. It is miserable. And all us natives try to stay indoors during this God awful month.

Now that I have complained about the heat, I will tell you that we ventured out into it, if only briefly. We did get out a few times this week. Our big adventure was to the Challenger Space Museum right around the corner from our house. My husband and I were all pumped to go to this being big science geeks who were once children who had dreams of space camp that were sadly thwarted for one reason or another. <picture one sad lonely tear running down our inner child's face L>

Disappointing would probably be the right word for the museum. And my husband would be calling me kind. In the brochure there are promises of getting to reenact a mission control sequence and simulating a space mission. But alas we did not get to play space man. The regular fee is for admission to the museum. There is a whole other price structure for such activities. So we got to look at a 5 foot recreation of the space shuttle (pretty much a large toy), see some photos of space landings and from the Hubble telescope (which we could've just Googled from home), and go look off the observation deck (which is actually just the roof of the building, remember not to shut the door or you will be locked out…seriously). The most entertaining part of the museum was the bottom level where the kids got to make crafts. They had a mock set of a typical 1960's living room with an old TV playing videos of the moon landing. The kids made crafts of the moon and meteors with foil and paper plates. We ended in the gift store which was half full of toy alien heads (sadly, I am not exaggerating). This place is supposed to be sponsored by NASA and they are selling alien heads. Ugh, I was just hoping to expose my young children's minds to the wonders of space and science and now they think aliens are not only real but a regular part of space life.

On another tangent, Brandon's team at work won this team building activity they had attended this week. His parting gift was an Ipod. He didn't need it so he asked if I wanted it. Now he gets to make fun of how stoked I was to get it. I know, it is old technology. But I get so bored at the airport and on the plane once a month. Anyhow, yes, I am all excited to be introduced to the world of podcasting. My TV time is normally limited to Sprout and Noggin during all waking hours. I get to watch one or two DVR shows during a week. So to have another entertainment outlet, however small and brief is much appreciated. So if you know if any particularly cool podcasts/audiobooks or the like I could listen to en route to our month appointments, let me know.

Until next time…

Happy 7th Anniversary

2009-07-14T20:56:00.001-07:00

Statistically once you have made it to your 7^th wedding anniversary, your chances of divorce decrease dramatically. Or so I read somewhere. I can see how this would be true. Not that I am any the wiser from this time. But I like to think that I have learned a little bit. Brandon and I have now been married 7 years. And we have known each other 12 years total.

Over that amount of time your relationship is exposed to a lot of stuff. Before marriage we separated and reconciled countless times. We survived college together. When we were finally sure that we were the ones for each other we had to divulge all previous relationship and financial information. And all of us are probably guilty of not being so great in one area or the other. But we accepted each other truly and wholly. And we decided that we had both built up enough character to make it in this crazy world together. As long as we had a partner we could rely on.

So over our Anniversary dinner (Mind you, one of the only kid free dinners we get all year, therefore one of the only conversations during daylight that is not consistently interrupted) we were reminiscing about all the things we had witnessed and survived as a married couple. And pondered what our future might hold. We have bought and sold our first house together. We have survived countless roommates. Each with their own distinctive personalities, endearing quirks and ultimately annoying ticks (we all have those, you only notice them more when it is someone that lives with you and you haven't made a vow with them, and yes we still care for all of you old roommates :). We have made it through different jobs, layoffs and changes in career, which brought us periods of wealth and near poverty. We have made it through the birth of our wonderful 3 children, which of whom are our greatest challenge and also our greatest salvation on this earth. And last but not least we have survived separation. Not because we wanted to be, but for the greater health of our son and therefore our family. So yes, I think after seven years I can say that true love still exists. Through sickness and in health, for richer or poorer, through sorrow and joy, through good times and bad. Here we are still together.

I hope that that next 7, 10 or 50 are as good as this. It might not be perfect, but it is certainly not boring.

Until next time…

Swimming for sanity

2009-07-07T21:30:00.001-07:00

Well, well, we are definitely back into the swing of things. Off vacation and back to reality. The reality that is a million and one tasks I have to do in a day. I will not bore with the usual rundown of minute to minute that I have to do usually in a day. Just reference a past blog and not much has changed from month to month. But we are freeing up a little bit of time here and there. My week consists now of checking meds, do they need to be reordered. When are Dylan's next appointments. Did a schedule out my next flight to Dallas for Dylan's check up already. Beyond that I do all the normal mom stuff with cleaning, cooking and teaching the kids.

But since I have an hour here and there to spare, I thought it would be a good time to schedule swim lessons for Alex. It has been long overdue. Before we attended, I didn't know what to expect. I am sure everyone has the nightmare scenario in their head that all the other mom's will be ex Hawaiian Tropic models with no signs of cellulite or stretch marks. And their children will be these perfectly disciplined stepford children. And of course, I was over exaggerating in my head. I went out and bought a brand new swim suit to cover any imperfections, only to find out later that the parents don't have to be in the pool with their children for lessons. And all the mom's were pretty normal. If they didn't know the other mom's from some other function, they had that same look of uncertainty that I am sure I had. And although we all come from many different backgrounds, we were there for the same purpose. To just watch our little ones to learn to swim.

Alex has done very well so far. He gets a little excited sometimes and wants to try to swim without the instructor. So they have to coax him back to the wall quite often and remind him to follow instructions. But beyond that he has so much fun in the water. He splashes around and bobs in the water near the edge. It reminds me of a simpler time. When I was little and learning to swim. And all that mattered was how good the cool water felt around you. There were no worries of how you looked or how oppressively hot it was outside. You didn't worry about anything. You just were. And it felt great.

So I am glad to have these daily reminders, if only for a month. Of how simple life can be. If only for 30 minutes a day during my son's swim lesson.

Until next week…

P.S. My husband wanted to reiterate to all the family that we were fortunate enough to see on our last trip to Utah that we cannot thank you enough for all of your support and prayers. We honestly could not have made it without you.

P.S.S. Bad blogger mommy. I did not post pictures from the trip last week. Half of them are available now here (http://picasaweb.google.com/mc12041/Utah?authkey=Gv1sRgCM6PsKrczJ6clwE&feat=directlink).

And by the way, besides a little runny nose Dylan is recovering from his last illness quite well. He is even starting to drink a little bit!

We are back from vacation! but not without a little drama.

2009-06-30T21:50:00.000-07:00

Two whole weeks without the blog and internet (eek! and yes I was having withdrawal symptoms). Wow, have we been busy. Well let me start from the beginning. Approximately 1 1/2 weeks ago we began our journey to see some of Brandon's family in Utah. We haven't been up to visit sooner because of Dylan's condition and risk of exposure. So with kids, you can't just go driving for 12 hours straight like you used to when you were single or married without kids. You have to make stops and a lot of them. So we split our journey up in two parts.

Part one, Phoenix to Vegas. So we got up fully intentioned on getting ready quickly and getting up to Vegas so we could do a few things without running into the Friday night crew ready to party and even more open with the "why are you bringing kids to Vegas" look. The very same look I used to give people fumbling with strollers walking in the blistering sun or better yet late at night on the strip. Complete with kids attempting to grab the stripper handouts (and more disturbingly vendors handing them these ads) and smoke in the babies faces. But our attempt was ill fated. We had to stop at every available stop along the way. Alex has to go potty, Dylan needs another feed, Maddie threw up all over her car seat. And then the stench of all the accidents intensifies slowly over hours in the car. What usually is a 5 hour drive became 8. I somehow thought we had gotten better at this over our trip from Texas to AZ, but we still have much to learn.

So at 5 pm we arrive at our destination tired, hungry and hot. It was already near 110 in Vegas at that time. And the only parking available at our hotel is a good walk away. We are staying at Excalibur only because we thought it would be neat for the kids. So we quickly get the kids up and out of the car and into the lobby. We had warned them not to touch or go near the "blinky machines" and they were for adults only. So they were pretty good about that. But we didn't get the memo that Vegas has gotten a ton stingier and really anti kids. There was a girl pole dancing right next to the lobby. Alex turns to look at the girl for a long time and then me and says "I really like Las Vegas mommy, look at the naked girl". Good God, I just have to shake my head and rub my hands on my temples. So now we are quickly trying to the get to the room. When we get there I check for internet (they want $15 a day), and I call for a crib for Dylan (they charge us $20), grrrrrr. So our only objective for the night was to eat and take the kids to the shark reef at Mandalay Bay. Luckily we are able to accomplish both of those. I will post the pics tomorrow. They had a great time. If you are wondering why Maddie is wearing Dylan's outfit in the pictures, it is because she dumped chocolate milk in her lap at dinner which of course doesn't look like chocolate milk when you are walking around. Yuck.

Quick post note, if we didn't get a chance to call any of our friends while we were anywhere, it was for lack of time and nothing more, I promise!!

Part two, Vegas to Salt Lake and beyond. We get up and go, thinking if we get an early start and have less stops we should get there in a reasonable amount of time. We did well on the early start, and we even did well with less stops, but we didn't count on the weather. About halfway into Utah we come across a storm that is dumping sheets of rain on us. The kind of rain pushes your car from side to side and you can't even see the lines on the road. We just follow the tracks of the semi in front of us until the rain subsides. After about an hour it does and we continue our journey into my husbands hometown of Coalville.

I could go on and on about how beautiful our week in Utah was. But I will try to keep it within reason. We got to see a lot of Brandon's friends and family that I had not previously met. All incredibly nice people. To say his grandmother was gracious, would not be doing her justice. She allowed us to stay with her, cooked the meals and played with the kids. I was so impressed and only wish I would've helped out more. We got to see a lot of the sites and most importantly get out of the oppressive desert heat that we are used to this time of year. Overall we had a great time, and I will be posting pictures tomorrow.

Our trip back although less eventful was fun only because we were all coming down with something that Maddie got on the trip. So once we got home, I literally had 2 hours to make sure everything was packed for my 8:50 departure the next day (which means I had to be up by 5:30 am and I am not a morning person). So the whole plane ride Dylan is so fussy. Thankfully my cousin Yeny and her husband are incredibly accommodating and after we arrive at their house, they take us to the hospital just so we can have Dylan checked out. They are also kind enough to pick us up at 2:00 in the morning after all the tests were run in the ER. Turns out he just has a mild form of the flu and after a treatment of antibiotics he is fine. However, lucky me has to get up again after 4 hours sleep to get ready to take Dylan in for clinic.

We had a great visit in the clinic. Most everything checked out great and we are off a few medications. So we are very excited about that. There are some weight gain issues, but we are currently in the process of trying to rectify that. Let's just say another post for another day.
And I nearly fell asleep when Dylan was getting his Echo cardiogram. If you have never witnessed one, it is always in a really dark room because they are trying to make it relaxing for the patient. After very little sleep, this equals a possibly embarrassing moment for me. I know I must have dozed off at least once in there. Oh well, no one said anything at least.

After clinic, back to the airport we go. I am soooo excited to get on the plane and just get home. So not in the mood to be sitting in the airport hearing of celebrity deaths and rogue Dallas car chases. I have visions of just falling into my own comfy bed after a nice hot bath. And usually I love listening to other people on the plane. But today, I am just praying the flight is half full and no one even looks at me, much less speak to me. I might be able to muster an incoherent grunt, but that is about it.

So here we are home again. We are nursing Alex back to health now. He is the last in the round to get this. It is officially called para flu I have been told. I am learning new medical terms all the time. I suppose I am at least still getting an education being a stay at home mom. Alex is so funny when he is sick. He is the most snugly, patient type of them all. Even to the point when Alex and Dylan had to get vaccinations on the same day. Alex's complete meltdown during his shots elicited the "being a little dramatic?" look from Dylan. It was great to see the sibling dynamics already forming.

All in all, a great vacation. If we didn't get to catch up with you while we were on our trip, I am truly sorry. But 4 states in 1 weeks time is pretty damn good. I almost feel rock star-esh. Without all the money and fame of course ;)

Until next week....

...Yes I really am posting pictures tomorrow (this blog took a really long time to write!)

Productive? I hope this is the start of a trend

2009-06-16T20:42:00.000-07:00

I know this doesn't make for the most exciting, soap opera type blog that we have all become accustomed to here. But it is nice to have a week without interruption. There is still the constant adjustments with the routine. Because with three small children there is always a semi emergency occurring. But it is finally getting under control. Things on my to do list are actually getting checked off. We unpacked and put away enough stuff in the garage this weekend to actually part a car in there. And *gasp* I actually went shopping by myself (hooray for the bath and body works semi annual clearance).

Could this be a sign of things to come. Possibly some kind of stability around the corner. Nonetheless, we are taking full advantage. I am getting to actually spend some quality time with the kids teaching them things instead of running around waiting on them hand and foot like a slave. I know some of you are laughing because you know I am a little obsessive compulsive and you are probably picturing me prancing through a flower patch in glee with my new found freedom. What do I do with freedom, I kill all spontaneity by using the time to plan and organize. Rather boring, if you look at it from an outside perspective.

But boring is good sometimes. Time to take the kids to the park, like we did this last weekend. Or time to snug with the fam and watch some movies. I wouldn't mind taking a little time to watch someone else's drama unfold.

We are gearing up for Father's day this week. Because we do so appreciate Brandon and all that he goes through to support this family. He normally does everything that is asked without question. And we love, respect, and appreciate his ability to be our rock amidst the storm that is constantly circling.

Next week we are going on vacation, so there may not be a blog for one week. Or at the very least a really short blog. And I mean short, because it may be a text message from my phone. But that will make for a pretty cool blog the week after. Which I am sure will be full of exciting things. Hopefully all good.

The picture is of Maddie. This is the first time we have been able to do pig tails. So cute!
Until next week...

Back into the swing of things

2009-06-09T20:19:00.000-07:00

So we are back home. Yipee! After another hospital stay we managed to get Dylan's eating somewhat on track. After quite a few medication adjustments we were able to stabilize Dylan's eating out. To make a long story short, we got all of his levels back on track and he is eating solid food again. This makes me very happy. He is still not drinking and he can't have dairy, but other than that he is back to normal. At least his kind of normal. So for that we are thankful.

We were released from the hospital on Friday. I booked a flight and got home about 6:00 pm. I am so thankful to be back home and get to sleep in my own bed. These hospitalizations, as routine as they are, are starting to seem semi normal. Between that and the plethora of things I have yet to unpack, my days are being defined. I am trying to drift to a focus more on the kids rather than all the stuff I have to deal with in the house. Or for that matter the stuff I have to deal with that pertains to Dylan's care. And I am suceeding, one baby step at a time. But it is hard and time consuming. I suppose all this endurance I am building has got to be for a reason. What that is remains to be seen.

So on a lighter note, we are starting to make a dent in the unpacking. The whole garage was full when we started. And now, it is 60 percent full, so maybe after our next round of unpacking stuff I can park my van in the garage again. This will be nice in the dead of summer so that I don't give the kids third degree burns on their legs from the metal seatbelts smoltering in the sun.

Next week, we have a few follow up visits. And could there be a vacation looming on the horizon. Vacation, what's that? Keep reading to see.

Until next time...

P.S. Lots of missed birthdays due to all the chaos in the hospital. We miss you and you are not forgotten. Happy birthday to my Dad (whom I am will call soon, I promise!!), my cousin Charles Lewis, and tomorrow my niece Lillian's birthday.

One more note, I will be updating old blog entries since Yahoo 360 is officially being shut down in a few weeks. So if you are a follower of the blog and see old blogs appearing like "Transplant about to occur", don't freak. We are just porting the rest of the 360 blogs over. That process should begin on Thursday.

Little D in the Big D

2009-06-02T21:52:00.000-07:00

I am so glad that we took it easy last week. Because I just knew we would be having another hospital stay this week. On Sunday we came out for our monthly clinic in Dallas on the first Monday of every month at 7:30 in the morning. Dylan has been fussy, angry, tired and generally in a sad mood for the last month. He has not been able to hold down anything but formula and pedialyte. And that means anything. So we still include him in mealtimes with us, but sadly he just has to sit there and drink his pedialyte out of his sippy cup and look at us all eat in front of him. The other problem is that his feeds have been extended to an hour long, where as previous to this stomach bug they were at 20 to 30 minutes, which is a typical meal time. So this business has been going on for a month and we are itching to get some answers.

I knew Dylan had lost a significant amount of weight because of all these shenanigans. About 3 pounds to be exact. Which is huge for a one year old. It is over 10 percent of his body weight. That and the fact that this particular clinic visit happened to fall on my son's Alex's birthday. So Murphy's law would dictate I would definitely have to stay over for the reason alone. But if it helps Dylan to finally be able to eat again, I will take it. It is so frustrating to see him have the desire to eat, but be unable to do so and join in with the rest of the family. I so hope that we aren't psychologically scarring him for life. Ugh, anyhow, we are just taking it a day at a time now to see what information we can gather to fix this ordeal.

We have been here since Monday. We do know definitively that it has nothing to do with his heart. Everything looks great in that region. Big sigh of relief. My first thought always goes to rejection. So now we have a mystery on our hands. They are taking lots of poopy samples and watching how he takes his feeds very closely. I suspect tomorrow there will start to be some adjustments made for him to see what he can tolerate.

So prior to the hospitalization we celebrated Alex's bday last Saturday. We just had a very small intimate party. He can save the big ones for when he has real friends at school. I am sorry, play dates are NOT friends. They are other children forced to hang out with one another because the parents get along. Kind of like man dates. When husbands are forced to hang out because their wives are girlfriends. So they are stuck there for a few hours trying to make man small talk, which generally involves sports. The conversation may degrade into home improvement projects if they get really bored of one another. Regardless, from what I understand they dislike the whole arrangement. My original point being is that I am totally unapologetic for not throwing my 4 year old a big party with kids he won't know the names of next week. I have neither the money nor time nor patience for it all. And Alex had a great time with just us and the siblings, so mission accomplished. Pictures are here http://picasaweb.google.com/mc12041/AlexBday?authkey=Gv1sRgCMCom-PSx5O_Xw&feat=directlink .

Also, our flight went much better this time. We purchased a seat for Dylan, so I didn't have to fear being on a sold out plane with a lap baby with explosive diarrhea. I also bought Good Nights extra absorbent diapers and these inserts that are supposed to quadruple the absorbency. I topped that with rubber pants and a seat protector for his car seat/stroller contraption. This method worked!!! I know it was a little overboard, but the rubber pants is where it all stopped. And I had to make this change on the stop in Austin. Right before the CEO of Southwest boarded the plane. So I am really, really glad that everything went smoothly for me this time. *Whew* . We didn't need another stinky mess mid flight

Thanks to everyone who have been writing messages of support. FYI, I can't get to facebook or myspace in the hospital. I can read every one's status via RSS. And I can post via Twitter. But I am limited beyond that. So just know that I am reading and getting updates and it is making us very happy!! Thanks!!

Until the next update...

Taking it easy

2009-05-26T23:03:00.001-07:00

Dylan is still not over that stomach bug. Yes, the same one he had three weeks ago. I will now take Dylan out only if I am armed with a can of Lysol and many antibacterial wipes, possibly a baby hazmat suit for Dylan himself. So for future notice, if you go to touch Dylan and I leap across the room spraying aerosol at you, you will know why you were temporarily blinded. It is only because I never, ever want to go through this again. Poor Dylan has lost so much weight and he barely laughs. It is taking every little white blood cell in his body to get over this thing. He just lies around and wants to be held 24/7. We did take him back to his pediatrician and his Phoenix cardiologist. His blood levels, EKG and ECHO look good. He is just genuinely sick. My baby is making a very slow recovery. I am very interested to see what they think in Dallas on Monday. So any prayers/positive thoughts are always welcome.

So that being said, we have been on lockdown at our house for the most part. We are taking it easy and hanging out. This is nice because I get to hang out with the kids with very little drama. And I am finally getting to unpack. Yeah!!!

We did go out once, to visit the Wildlife Zoo and Aquarium. It was pretty cool. I am posting pictures here (http://picasaweb.google.com/mc12041/WildlifeZooAndAquarium# ). Dylan just kind of hung out in the stroller and watched everything. But it was good to get out on a day when it was below 100 and just get some fresh air. Alex and Maddie loved all the animals. And they especially loved the train ride around the park. The pictures do it better justice then I could explain.

On Saturday there was a little drama. The medications I had ordered the previous week were not delivered. So we spent much of Saturday night and Sunday morning on the phone trying to acquire one rejection medication that he can't live without. Turns out today that the order I had made last week was never submitted. I was short of furious. Why is it, it seems you have to follow up on every little thing you do. Anyhow, another rant for another day. Luckily thanks to the combined efforts of our transplant coordinators, we got Dylan's medications on Sunday. Now the thing that makes this particular medication so hard to obtain on a weekend is that it is specially mixed per patient. You most often have to buy these medications at apothecary shops. I thought apothecary shops only existed in medieval times and maybe at Renaissance Festivals until Dylan came along. But here they are in modern day America mixing up specialty pharmaceuticals. So filling this order on Sunday of Memorial Day weekend was no easy feat.

That was our weekend in a nutshell. And in case you were wondering from last week, the Best Buy guy finally showed to fix the beeping noise. But the ice maker still doesn't work. I was promised a call from a Supervisor by tomorrow morning. I am not holding my breath.

Until next week…

P.S. Monday is Alex's birthday!!!

Dylan is home! ! … and Why I Hate Geek Squad

2009-05-19T21:43:00.001-07:00

After a weeklong stay at hotel a la Phoenix Children's Hospital we are finally home. The good news is didn't have to share a room thanks to his transplant status and him being susceptible to every virus that comes along. But we did have to stay longer than your average patient with a stomach bug for the transplant reason as well.

The problem was once we got the stomach bug, it altered Dylan's absorption rate of medications. Once his medications were off, that causes severe nausea and diarrhea. So it is kind of a catch 22. And a slow road back to recovery. Thank goodness for all of the expertise surrounding Dylan. After a week of finally getting the vomiting under control and then the blood levels to an acceptable balance, we were in the clear to go home. That with strict instructions of the slightest relapse we were to report back to the hospital. Thankfully he is still at home recuperating with us. He still has a sensitive stomach and is very lethargic. But we are getting his feeds down and they are staying down. This is the most important part. I guess I will have to be more diligent about exposure in the future. Ugh, live and learn.

So why do I have such disdain for Geek Squad ie Best Buy (they act like they are separate companies in order to confuse you, but if you read the fine print Geek Squad is a subsidiary of Best Buy). Let me start from the beginning. About a three weeks ago, we purchased a refrigerator because the new owners of our old home made my refrigerator part of their deal . It was a beautiful stainless steel huge fridge that I picked out myself and saved the cash to pay for, but it is no longer mine L. So after perusing all the Sunday ads, Best Buy has the best deals that week. Off to Best Buy we go.

We find a fridge that will fit in our new place, but isn't ridiculously expensive and we buy it. But in scheduling the delivery, there is a problem. They can't get it to us for 3 days. Which is a problem, because there were two medications that Dylan had that had to be refrigerated. I explain this to the salesperson and plead for a date as soon as possible. They say it is out of their hands, it is Geek Squad's responsibility and that is the soonest they can get it to us. So after haggling a bit more, they give us a discount, we a buy a mini fridge for the meds and agree to the delivery in 3 days.

Three days delivery ends up being 1 week somehow, this should have been the first indication of problems to come. So we grin and bear it and wait with our mini fridge and a cooler packed with ice. All the while we are moving and I make a trip to Dallas and back for a follow up appointment with Dylan.

So we finally get the fridge. It is delivered, they delivery guy quickly rushes through explanation of setup and then leaves. I figure, no big deal and just thankful to have a full sized refrigerator.

Our refrigerator has this cool digital display on the front that lets you know the temperature. And if the that temperature is not in a certain range it makes a noise. In fact, it is a very incessant dingy noise. A noise similar to that you might hear in a Vegas casino if you hit the jackpot on a slot machine. Except you are the winner of …. A Turkey sandwich …. Yeah!!!!!

I called Best Buy an hour after the delivery guy left to notify them of the faulty refrigerator they sold us. The deferred us to Geek Squad with promises of a repair specialist coming to the house. I agree with the hopes of our refrigerator being fixed in 1 week. Well after one week, at said delivery time (the ubiquitous 8 to 12 range) no one shows up. I am beginning to get pissed about this situation and call them after the delivery time has passed. The Best Buy store we bought the fridge at no longer wants to deal with us at all and defers all further communication concerning the matter to Geek Squad. Even though I have been extremely polite and reasonable up until now. At this point Geek Squad apologizes and promises me that someone will be out in 3 days. This is when their delivery guy doesn't show AGAIN! So back on the phone I go, this time irate. And I try not to take my anger out on customer service, that being my first job out of high school and all. They say the mistake was because the part is not in their position yet, but they can deliver on Sunday.

Again Sunday, with the no show. I call mad beyond words, let them know I will never shop at Best Buy and will let everyone that will listen to me know how retarded Geek Squad people are (I am so sorry, that was an insult to retarded people, my apologies). So she says they don't even do repairs on Sunday and reschedules me again. Well this instance happened one more time and we are no waiting on tomorrow as our final repair date. All this while Best Buy or they wholly owned subsidiary Geek Squad don't offer any kind of apologies or way to make amends, ie gift cards or discounts of any fashion. I know it is a downturn economy, but people remember service issues, and when things get better this will not work in their favor. So far they have been avoiding me like a bum dad evading child support.

Thanks for letting me rant, that is my story. Feel free to share your Best Buy horror stories with me. Misery loves company you know.

I have decided to wait and post the COTA blog specific to Dylan's medical updates after our trip to Dallas June 1^st. It has been a trying month with the move, birthdays, travelling and our annoying refrigerator.

For this blog, we will wait until next week…

And yes, I am working on getting pictures soon.

Hospitalized from a tummy virus

2009-05-13T21:34:00.001-07:00

First off sorry I had not gotten to the COTA blog for further detail of Dylan's last cardiology clinic appointment. I do have a good reason for that. It is because I have been immersed in a sea of yuckiness due to a stomach bug that has been travelling through our house.

Since the last installment of this saga I call my life, a lot has happened. After Maddie and Dylan's last checkup at the Pediatrician, turns out everything is not fine. That flu bug that has been going around, Dylan had contracted it. So by Friday I notice he is throwing up about half of his feeds. And I keep thinking that he will snap out of it. I give it a 50/50 chance that he will get better. But by afternoon, desperation sets in because I know he is just holding steady and not getting better. Luckily there is no fever and his blood pressures are normal. So I call the home health delivery company to get a pump delivered. They of course need a doctors order. So I spend the rest of the afternoon trying to get orders to the delivery place so I can get a pump for Dylan's feed over the weekend. I am doing this so that I can set the flow of liquid to a slow rate so that he won't throw up. For us it would be the difference between chewing ice (slow rate) or chugging a beer (high rate). (Again, I have not chugged a beer since college, that might disqualify me as a transplant mommy J) So of course, I fail at my objective and I have to go through the weekend with gravity bags, which is a fairly high rate.

The inevitable happens, which is that he gets progressively worse over the weekend. I am determined that if I can't control the rate at which he gets liquid, I can control the amount. So I just reduce the amount and give him more feeds. This tactic gets me through Mother's Day. Which was very nice thanks to Brandon and the kids, although we did decide against going out because of Dylan's condition. I get an IOU for a brunch somewhere. And without the crowds … bonus!

By Monday morning he is throwing up meds, which is definitely the last straw for me. So off to the doctors we go, where we are immediately directed to the Emergency Room for evaluation and then further for admittance to the hospital. So even though everything else is normal, the throwing up is enough to throw off his medication levels, which provides the avalanche effect of making him more nauseated.

Since Monday I have faithfully been next to Dylan's bedside comforting him and trying to figure out a way that he can take some liquid and keep it down. Brandon is taking tonight's shift so that I can get a few things done at home and relax in my own bed.

Besides the occasional vomiting, Dylan is in good spirits and everything else looks pretty normal. He is doing his normal flirting with everyone. Very cute. On top of that I think he is also cutting 2 new teeth.

It's awful that a 24 hour virus that most of us just suffer briefly, causes him 2 weeks of grief. I guess this is another glaring example of what immunosuppressant's can do to your system.

I am hoping that next week I can be writing about all the weird stuff that I get to finally unpack from our move now 2 weeks ago. But who knows, our life is an ongoing adventure.

Until next week…

Non stop action

2009-05-08T14:04:00.001-07:00

Well it has been extremely busy since the last blog, even for us. We were in the midst of making travel arrangements and packing up the last time I wrote. Last Thursday we were able to obtain the keys for our new house. But we also had a birthday to celebrate, or should I say two birthdays. We got separate mini cakes for Maddie and Dylan, with cupcakes for the rest of us. We have more video than pictures for this one. Once we are adjusted (maybe a month from now), I will be able to transfer those to the computer. Nonetheless, it was a great last celebration in the old house.

And we started moving in on Friday. I am sure anyone who has lived in a house long enough can attest to the fact that you accumulate a lot of stuff after time. It seems as if the longer you are someplace, the more you have. We found that to be true with us. We filled up a whole moving van and still had to do about 10 – 12 trips with our van after that. All the little things you forget in the cabinets, in the backyard, in the garage and such. Friday we dropped the kids off at my mom's and we got to work. All day and night we moved stuff. Unloading and reloading. Even then we still didn't get everything done.

On Saturday we were still moving tons stuff back and forth, but it is our first official day in the house as a family. The kids are with us and getting adjusted to having their own rooms. This is huge considering that just a month ago, we were ALL sleeping in the same room. If that prior sentence does not strike fear into you, just try having your whole family sleep in the same room for one night. It is not easy.

Sunday I had to go to Dallas for his Monday clinic appointment. So we drop off the kids at my mom's house again. And off to airport with Dylan and I. Luckily I was prepared and had already packed our bags. Little did I know, that Dylan was in the beginnings of a nasty stomach virus. So when he threw up in his carseat, I didn't think too much of it, just thought it was nerves from all the moving and such. After making it through security with all of his meds and equipment (which is always fun <insert sarcasm here>), we are off for our flight. He slept most of the time, which was great. But he had a huge blowout right after taking off from Austin for Dallas. He was covered from hip to toe. It was disgusting. Somehow I managed to change him there in his seat. The lady sitting next to me was very nice and helped me change him. Turns out her mom is a liver transplant and she understood the potty issues were due to his magnesium intake. She said she doesn't really believe in coincidences, and I would tend to agree with her. It seems that situations always seem to happen for a reason. I will go into the very existential topic another time.

So we finally get to our destination, and after a cab ride that takes 5 minutes and $25 later we are at our hotel. We got checked in, some room service, a bath for Dylan and off to bed.

At 5:30 the next morning (mind you 3:30 am Phoenix time), we are up and getting ready. Clinic was great, I will go more into detail on his visit on the COTA blog. But the long and short of it was that he looked great. He was ok to come back home with us. So immediately after his appointment, we grabbed a taxi back to the airport and off we go again. So of course there is no diaper situation until we get on the plane again. Amazing how that works. And also some throw up as well. But after making it home we got Dylan AND his car seat thoroughly sanitized. We picked up the kids and made our way home. In the meantime while I was in Dallas, Brandon was sanitizing the house for it's new owners. He worked until 3:00 in the morning cleaning up everything.

So on Tuesday, poor Brandon gets the same stomach virus that Dylan has. Between exhaustion from cleaning and whatever bug we have, he is down for the count by lunchtime and I go and get him from work. And at least he gets some rest for the day.

On Wednesday, Alex is throwing up in the morning, so we are now in confirmed 24 hour virus land. Good, at least I am 95% sure it isn't something worse. We did have to wear that embarrassing flu mask all through the airport and hospital after all. Some people give you some dirty looks for that, like you are overreacting some how. I should have shirts made up that explains our situation J, maybe some people would be more understanding.

Thursday, I am feeling a little under the weather too, but nothing like everyone else. Thankfully, Dylan and Maddie have checkups at the Pediatrician. Everything looks fine. Turns out there is a virus going around. Dylan is starting to do better and we are in the clear.

I am sure there are a ton of details that I am leaving out, but bear with me, it has just been one of those weeks that I will be thankful is over. I will be posting Dylan's COTA blog this weekend to go more in details on how is clinic visit went. So be sure to check that out. And hopefully by next week, we will be getting back to some kind of normal. Even if that normal consists of unpacking boxes and such!

Until next time…

Travelling with an immunosuppressed baby during an epidemic (yeah me!!)

2009-04-30T15:12:00.001-07:00

Hi All, I will keep this week's blog a bit brief because we are still preparing for our big move. We get the keys for our new place in an hour and we still have to pick up dinner and birthday cake for Maddie and Dylan for tonight. We can't cook dinner because everything is packed away. Does the craziness ever stop J

We got to see all of our friends at Kate's cup this morning. Kate's cup is our mom's group. They have brought an enormous amount of support to our family during this whole transplant process. It was awesome to see everyone and show off little Dylan. And we got to meet some new friends that have been supporting us from a far. There were balloons and cake waiting for us thanks to generosity of our table. It seems like I have the perfect speech set up for my group after I had the opportunity to get up and speak. Ah well, I will have to write it down here at a later time. My writing is generally better than my speeches are anyhow. If I missed saying hi to anyone, I am sorry, but I will be back next week. I look forward to speaking with everyone. We missed you so much!

Now, what's on my mind. Three things, birthday party, moving, and travelling. The first I will address next week, but we will celebrate tonight. Moving, I could go on and on about, but again next week. We all know how tedious and time consuming that whole business is. That leaves us with travelling.

Ugh, I am not looking forward to this. I am looking forward to seeing the staff, who our family considers our friends, at Children's in Dallas. It will be great to see everyone again. What I am not looking forward to is dodging the latest bio-germ at the airport and hospital. Everyone is going to think we are over reacting with the face mask and hand sanitizer and such. But Dylan is immune system is suppressed. So the mask and antibacterial gear is kind of a forever thing with him. Or at least until they figure out a way to have a new heart without suppression drugs that keep his little body from rejecting his heart.

So with that being said, I thought it would be a perfect time to address how to handle Dylan. He still has his NG tube, which I know must look a little scary, but it if you are careful not to pull on it then Dylan will be ok. Also it leaks at times, so beware of your clothing. Yuck, I know. I go through at least 2 wardrobe changes a day. But then again that would probably happen with 3 kids 3 and under anyhow. If you have been sick in the past 2 weeks, please refrain from touching Dylan. If you are well, just good hand washing or antibacterial gel or foam before playing with Dylan. He does love playing with everyone, so we don't want to discourage touching. If you are sick and you absolutely must come over, please just use one of the surgical masks we will provide at the house and we have a variety of antibacterial products available for washing up. And please wash up for at least 20 seconds (sing twinkle, twinkle little star, (can you tell I am confined with three small children J)). Don't feed after midnight, oh wait, that's gremlins, sorry I was just checking that you were paying attention.

He is at highest risk for infection and therefore rejection of his heart one year post surgery. After that, his risk decreases dramatically, however our standards of clean have to remain. He will always have to wear his mask at the hospital or other places where we are sure people are sick.

Other than that, he is a typical baby boy. He is allowed to play in the mud, and go out and do most things little boys love doing. He loves meeting new friends, so please don't let the precautions scare you.

Next week, I will write about our move and the kiddoes birthday and our trip.

Until then…

Didn't we just move?

2009-04-25T16:35:00.001-07:00

Well, it has been a little over a week since we have arrived home. There are still only brief pauses for us as we are living moment to moment still. The good news is that we are hoping to finalize the sale of our house this week with the appraisal. Then we can put some money down on a rent house. If all goes well we will have a week to move.

I have been busy with the details as always. Make travel arrangements for our next trip to Dallas, planning a 1^st and 2^nd year birthday party for Maddie and Dylan next week. And figuring out how we are going to pack our entire house and move it, just after we got home. Ugh, rest sometimes seems like a distant memory.

Other than that, Dylan had his first checkup in Phoenix. So far so good. Other than the fact than I had to go to 3 different places in town, one for office visit, one for blood draws and one for x-ray. I am sure that I will figure out a way to streamline this process. So this week will be a short blog, as our settling in process is going to be expanded. Next week, we've got moving and birthday parties. And hopefully we get to visit our friends at Kate's Cup, our mom's group also!

Until then…

Home again, temporarily

2009-04-18T23:19:00.001-07:00

Well, where should I begin. I feel as though someone spun me around ten times, stopped me and then slapped me around. That is the overall experience in a nutshell. The move although not awful, was still chaotic, crowded, and rushed. Would I expect anything less to the ending of phase one of our trip. Not at all.

I will start with the night before we had to drop my mom off at the airport and then pick up Brandon. So there I am furiously packing. I found it is hard to pack while a two year old is following you unpacking everything you just managed to pack. We also had Dylan's final speech and occupational therapies. It was very very sad to say goodbye. And we were hoping to get a little more progress since we suspect Dylan has a sensory disorder. More on that later. And all the while my boys are a snotty mess with what is appearing to be rising temperatures. Because I have a extremely tight schedule, I decide to wait to see what happens.

Part of my "transplant training" requires that I am aware of certain criteria that are signs of rejection. Just in case you wanted to know those criteria are as follows:

Temp > 100.5

Vomiting/diarrhea

High Pulse

High Blood Pressure

Trouble breathing

Dizziness

Decreased appetite

Decreased energy

Increased puffiness

Frequent urination

Signs of respiratory infection

Signs of wound infection

Dylan was showing the first 5 signs, when I decided to make the call. It was 9:00 pm when I spoke with one of our coordinators and we agreed that I should go to the emergency room to have him checked out just in case. So I bring in Alex also just to kind of baseline how bad the illness is in a normal child. We went out to the Children's facility in Plano for a shorter wait. By the way, extremely nice facility. No wait, flat panels in the ER waiting rooms and slushies for the kiddoes. The kids weren't even bored. Can't beat that. Long story short, turns out both kids just have ear infections. After labs are drawn for Dylan there are no signs of rejection. Whew! Big sigh of relief. So 6 hours and $500 later we are home again. I fall into bed thankful that I don't have to worry about the kids on the road trip. Just look forward to some incessant whining that comes along with the sickness.

Four hours after I get the kids settled down and into bed, I am up again. Time to get ready for the airport. We get my mom's stuff loaded up, pick up our prescription, drop off the TV that our friend Johnny lent us for our stay and then off to the airport we go. I drop my mom off at her gate do a round about the airport and then pick up Brandon 10 minutes later. So far our timing is flawless, despite the fact that I want to fall asleep at the wheel.

So we get back to the apartment, settle in for the night and get ready for our trip. Unfortunately I greatly underestimate what should've been prepacked. Saturday morning, I get up and start throwing out things we don't need, packing things we do, all the while still tending to the needs of our now three sick children. All whiny and restless. It gets to be 9:00 am then 10:00 am and we are still not done. I start to panic and then just throw a heap of stuff into the give away pile. By the time we hit the road it is 11:00 am. But, it is finally done. I hope that another tenant will appreciate all the practically brand new bedding and kitchen accessories that I had to leave behind. Including an unopened Crock Pot. *Sigh*, oh well, if that's the worse that will happen on this trip I will take it.

5 hours to Odessa. Just past W's hometown. I did get the shivers passing through. That being said, the people of Odessa were very accommodating and nice. The Choice hotel out there was brand new and quite impressive. I was half expecting some 70's era, smoked filled, pay by the hour joint. But there we were in a room that was more impressive than a lot of suites I have been in Vegas. So we settled in for the night in our comfy beds, with a HD TV again and three medicated children, hurray!

The next day, we are off to El Paso. We have previously agreed to meet my good friend Crystal, but not stay there because her poor baby was sick. Turns out she needed to be more afraid of my children. That aside, we all got to meet for dinner. It was 5 children vs 3 adults. After being cooped up in the car for almost 2 days, they were more than a little pent up. I am sure we got more than a few stares, but at that I was so thankful to have a semi adult conversation, decent food and be out of the car, that I just didn't care. To all of you who may have witnessed a similar situation, I am sorry, I am now that parent who takes there unruly children out to eat. But consider that they may have been in a similarly uncomfortable situation as ours over the course of the last 4 months.

That being said, after our all too brief outing, we made the extra hour drive to Las Cruces. Las Cruces being another town I expected to be a hole in the wall. But not so. Apparently there are doing major renovations to what I formerly considered no where USA. We stayed in a Holiday Inn Express this time. Equally as nice. We were in a suite with a 4^th floor view. I do think the hotel is was the tallest building in town through. Nonetheless, another day down.

Day three, we got up and headed out rather quickly. We were ready to be home. As much as I normally complain about Phoenix, it is still my home. And I was rather looking forward to stepping in my front door, falling into my own bed, watching my own big TV. All the things most of us take for granted. Because as you walk through life and accumulate things, you think that you will always be afforded those conveniences. And you may not be. I was lucky to have this (one of many)lessons thrust upon me. I could come home. Some people may have grown appreciation for their "things" after flood, fire or war. And they can never go home. But after this day, there I finally was … home.

I looked around at our immaculate house, starring at the realtor cards for when our house was shown thinking thank God this part of our journey is over.

And now for the next part of our journey. The part where we finally sold our house! I only hope that it provides the new owners with all of the happiness that we got to experience with it. So now, I get to look at some houses. We are very much looking forward to getting one extra room so that we can accommodate our now larger family. So next week, on the hunt for a new house.

Until next time…

Finally Home!

2009-04-16T18:58:00.000-07:00

Ugh! We are finally home. I will post more this weekend when I can actually think straight again. Until then I am going to "rest" or whatever "resting" is with three kids is anyway :)

Moving day is upon us

2009-04-08T12:05:00.001-07:00

So here we are. The day that we never thought would come. We are getting ready for our big move. I have been spending the better part of this week mailing packages, cleaning clutter, and scrubbing every inch of the house. I didn't used to clean this thoroughly when I would move. But with kids there are hidden gems everywhere in the house. A smudge of peanut butter behind the couch. Maple syrup fingerprints on the baseboard of the bathroom. And then some things that have absolutely no explanation and are just surrounded by confusion, like how did sand get in the house and what is it doing all over the windowsill? So with these mysteries abound, you have to look at every inch of the house before leaving. Not that we didn't clean while it was happening. But who can account for all those moments that the kids were being really quite and you can account for their actions J

Beyond that life has been pretty status quo, which is a wonderful thing. We did try to get out, but have been much busier preparing for this move than we had previously thought. So our outings have been limited to McDonald's playland last week and dinner out with my family last Saturday. Which by the way, it was awesome seeing my cousins, Uncle and Aunts. Dylan was super excited to be able to go out and flirt with new people. I hope we get together more often in the future.

Oh, and the news from the insurance came down. Our new insurance provider will let us stay with Dallas as Dylan's primary cardiologist until January. However, they have a policy of NOT paying for travel expenses. So we are on our own there. But thankfully, friends and family have come through beyond our expectations. We have been lucky enough to have had some very generous donations on behalf of Dylan. If I haven't said it to you directly or before, thank you, thank you, thank you again. So after January we will have to find a new transplant center to follow Dylan. I guess we will take it one step at a time.

Also health updates for Dylan will be posted on his COTA site for fundraising purposes for his health costs. I will probably be posting monthly to the COTA site because that is when his appointments will be. Again, the website for that is http://cotafordylanthomasm.com/ and the blog is here http://cotafordylanthomasm.com/blog . Remember the total costs we are trying to raise is for his lifetime. So any amount helps. Thanks again to all who have contributed.

I am certain there will be many misadventures on our roadtrip. So be sure to tune in next week. And say a prayer for us to have safe travels over Easter. Thanks!

Until next time …

Going for a ride

2009-03-31T20:06:00.001-07:00

This past week has been a little hectic and sometimes stressful, but we have still tried to have fun through all of it. As I said last week, we are on the edge of our seats waiting for word from our new insurance provider. We probably won't know complete details until the end of week or beyond. But at least we can start asking questions tomorrow. And at that point, depending on the answers we get, we can start some planning on where we will go in the future.

In the meantime, I am making more immediate plans of travelling back to Phoenix. As you can see from the countdown meter, time is getting nearer to being able to go home. We are very excited. So I have done some staging. I loaded all the suitcases and such into the car and then put them back. And now we have filled all of the suitcases to see what will fit. All that is left is to stuff the bin full of toys to see what will fit there. You see the problem is the same with any long term trip. We have much more stuff now then when we arrived. Everyone has been so kind to Dylan, myself and the children during our stay. So now their toys have multiplied. So we are trying to decide what to mail back and what to drive back in the van. I know, I know, it all seems a little OCD. But the last thing I want to happen to is have the car full and half an apartments worth of stuff sitting behind.

Despite all of this, we are desperately making an attempt at normalcy for the kids. And even beyond that a little fun. So when we first got into town I saw that a lifesize Thomas the Train was going to be in Grapevine. And it happened to be last weekend that it was coming. Most people with toddler boys know that this is one of their favorites. We should know, Thomas has taken over Alex's room along with Lightning McQueen. So I figured we would be here long enough to see it and luckily we were. We got approval for Dylan to come with us and we carted the kids out to Grapevine (a suburb of Dallas, which is one of the greenest most beautiful places I have seen in person). So Alex was starstruck. He was a little shy to even go up to the train. But we got on and enjoyed the 20 minute ride around town. It was all very exciting for little ones. I will post some video along with the picture.

Dylan's clinic this week went beautifully. The cardiologists have come to a compromise. We will be seen in Phoenix once a month and then Dallas once a month. Still expensive, but not as bad as every two weeks in Dallas. I spose we will figure it out somehow. Keep watching to see J

Until next week. . .

P.S. For those of you that are curious, my mom is holding up. Although it is brutal to get through some of the days with all of the meds, and diapers, and you name it with three kids, but the payback is definitely worth it.

March 25, 2009 – Tense transitioning

2009-03-25T19:20:00.001-07:00

Well, the torch has been handed from Esmeralda to my mother quite with very little problems so far. What we are starting to sweat is all the details of the move. Specifically the changeover of insurance that is about to occur as of April 1^st.

We won't be privy to the details of what is covered until April 1^st exactly. Interesting that is also April Fool's day, so that will be interesting. But what we have heard through the grapevine so far is that our new insurance will not cover travel expenses to out of network locations. And they consider our current location out of network. So we are a little more than freaked out that not only will our travel expenses not be covered, but neither will our appointments. All details that I am dying to know. I will definitely keep you updated on that.

So in meantime, we are staging the move. We don't want to move a whole lot back to Phoenix. We figure that we don't have enough for a U Haul. We are just trying to preemptively mail items that are lighter in weight back to Phoenix, so that we don't have to waste space packing them. I am going to put the empty suitcases and some boxes in the car. And whatever fits, that will give me a good idea of how much space we will have. What we have in the house that fits in those suitcases and boxes can go home with us. Otherwise, we will have to mail it home or give it to Goodwill. That is our rough moving plan in a nutshell.

So our outing this week has not occurred yet. We have tickets on Friday to go and ride Thomas the Train. Dylan is coming too, with a high level of supervision and large quantity of antibacterial gel. We are very excited. I can't wait to see the kid's faces. We will get plenty of pictures. I am just sad Brandon won't be there.

So I will keep you up to date on the very dramatic conclusion of our adventure in Texas. Hopefully there is no drama. But it wouldn't be an adventure without a little drama. If nothing else, it will make for the best story at the nursing home when I am a little old lady.

Until next time…

P.S. For my interactive portion of the blog this week, I am going to give a favorite website. I will be using it in the next few weeks to track Brandon's flight here. It is www.flightaware.com . If you type in the flight number/airline and departure/destination cities you can see where a flight is on the map. It is kind of fun and a little comforting knowing where your loved one's plane is midair. Enjoy.

March 20, 2009 – Let the madness begin

2009-03-20T13:22:00.001-07:00

Sorry for the late entry. This week certainly got away from me. I expected that it would be a busy one. My father and my sister Elizabeth came into town on Tuesday to spend some time with the kids.

On Wednesday we went to the Natural History/Science Museum here with the kiddoes, which was a lot of fun. We got to see dinosaur bones which I will post some pictures of on Picasa. And we got to see some big stuffed animals like Bison and Deer and such. The weather was beautiful and the kids had a great time just getting out of the apartment to enjoy the scenery. It is spring break here, so we couldn't stay out too long because it started to get crowded and we didn't want to expose Dylan to everyone.

Also on Wednesday, I finished setting up the friends and family brackets for March Madness. We have had different winners every year recently. So it always makes for a fun and interesting few weeks of casual college basketball viewing.

On Thursday I would've loved to watch the games, but we were getting things ready for Esmeralda to leave on Friday morning. I also had to pick up my mother from the airport so that the "helping out with Dylan" torch could officially be passed J So now we officially begin the final three weeks of our stay here in Dallas. I am very excited to be done and to go home to Phoenix.

Therapies are going great well with Dylan. He is drinking a little bit more each time. And by that, I mean 5 cc's more each time. Baby steps, I know, but every step is one closer to getting that NG tube out for good.

I will post pictures tonight. And once I am a tad bit rested from the change over, I will be able to focus on writing a little bit more in the blog!

Until then . . .

P.S. Please excuse errant entries to the blog in the upcoming weeks. I am trying to finalize converting all of the entries over from the old blog into the new one.

March 11, 2009 - Million Dollar Baby

2009-03-11T19:50:00.001-07:00

First a quick note. We are moving the blog. Yahoo is not going to support the 360 format for much longer. But they are supporting Blogspot, along with Google. So after doing much research, I have decided this is where our new home for the blog will be. I hope that it is easy to get to and enjoy.

Well, the last week has been as eventful as usual. But that is because we were trying to get some last minute quality time with Brandon. He went to work at his remote location and came home to us each day. We took it easy Saturday and Sunday we saw him off on his flight back to Phoenix. Which I try not to think about too much, because I get sad because I miss having our family being a whole unit. If I ever took it for granted before, I certainly don't now. Maddie cried "Daddy, don't go, I sorry", when he was leaving. It is really heartbreaking. Alex didn't know what quite to make of the whole thing. But I think that he understood that his father was returning shortly.

So on Brandon's return to Phoenix, he had a mountain of mail to go through. And anyone who has spent any amount of time in the hospital knows that they send you the bill regardless if the insurance has paid it or not. So we got the biggest bill from Children's in Dallas. It was for the actual transplant surgery. It was negotiated down from $707,000 to $607,000. With each of his ICU stays averaging about $150,000 a piece, Dylan has reached million dollar baby status. It is wild to think about now. And I am quite thankful the surgery is available, and in turn that insurance is there to help pay for it. Brandon wonders how much the staff gets for the surgery a piece. They certainly deserve every penny, but we were just curious what a miracle costs these days J

Because of the wonderful care he has gotten, Dylan is thriving. He keeps up with every checkup, getting better and better. It is hard to not stress after waiting for the other shoe to drop for 9 months and then to suddenly have everything be ok. But I am becoming a believer that things will improve. It is just taking a little time. We are at the one month to go in Dallas point. My father will come in to town to pick up my stepmom next week. I have said it to everyone I have talked to, but not mentioned it in the blog very much. I am eternally grateful for all the help that my stepmom Esmeralda has provided. I can never repay or thank properly such selflessness. To come help out your step daughter that you only knew casually and are not blood related to in this manner should earn her karma points/a special place in heaven. Our family is so very thankful and humbled by this act of kindness. My mom will be flying in next week as well to relieve my stepmom. Thankfully they get along really well. And I am truly blessed to have a family that can get along despite anything.

So we are definitely on the countdown with one month to go. I am literally counting the days down. I can't wait to have a room to go to escape the kids for a moment. I want a bed I don't have to stealthily sneak into without waking up 3 kiddoes. I want to be able to have a conversation with my husband uninterrupted because I am on the phone. So many things that I have a new appreciation for.

Another thank you to Kara at Legacy Salons here in Arlington. She heard our story and volunteered to do all of hair for free. She did a phenomenal job. Just ask any girl after a lifechanging event whether it be getting married, having a baby, or going through a catastrophe, going in to get your hair done restores a little sense of pride and dignity. I know it sounds silly to you guys, but ask any girl in your life. If you ever want to lift the spirits of someone in need and don't know what else to do, this is a good offering for sure. So the picture for the week is Maddie with her first hair cut. I think she looks like one of the most adorable things I have ever seen, but then again, I am the mom J

I also want to thank in advance all the girls at my mom's group in Phoenix at Kate's Cup. I understand that they are donated the proceeds from their annual garage sale to Dylan's COTA fund. This will be extremely helpful. We have been blindsighted with many expenses over the past few months and are slowly readjusting. When you in a situation like ours, you have to react to the medical emergency first and think about the financial implications later. And later has definitely arrived. The pain of this has been greatly eased through the help of friends and family. We are so very thankful for the community support. It is inspired me, that when the bulk of this is over, to give of my time and self to others. I had no idea how much this can really help families in need. And now I know first hand. Again, thank you, thank you, thank you!

Until next week…

March 04, 2009 - Trip to the museum and some interesting news on the house

2009-03-04T19:52:00.000-08:00

Well, well... the sale of the house just couldn't go smoothly. Apparently we got the nitpicker inspector. This guy was citing things like water faucets in the bathroom in "fair" condition. They in fact work fine, they are just a little dated. I didn't know when house inspectors got to cite design flaws on their report as irrepairable building flaws. He also wanted those plugs with the reset button on every outlet in the house. I have never in my life seen a house with that many reset plugs, EVEN new ones. Ugh, regardless we are taking the opportunity to fix a few more things. Unfortunately this idiot drove away our buyers. They didn't even give us a chance to fix anything, and we are completely willing to fix anything and everything. Our realtor assured us that she hasn't seen an inspector like this in a long time. So reglardless, our house is back on the market. Please send any prayers, positive energy or good mojo over our house to help the sale be final soon!

Besides this bit of bad news, we did manage to have a good time with Brandon in town last weekend. I have been wanting to see the King Tut exhibit here in Dallas and I thought this would be a good opportunity. So after clearing it with the doctors, we decided this would be a perfect first outing for Dylan. We all had a great time. Dylan really enjoyed getting out, even though he had to wear a mask. We did get a few stares, but it was all worth it. Apparently 9:00 am on Sunday is the time to go. There were barely any lines. But by 1:00 pm there was a long line outside. It was also a good opportunity to see the rest of the museum. Luckily Maddie fell asleep halfway through it and we were able to enjoy most of the museum without any screaming. It isn't Maddie's fault, she is just approaching that terrible twos stage were everything is quite dramatic and everyone is going to know about it. Alex was content to ask plenty of questions about all the paintings. And I am sure Dylan just enjoyed the pretty colors. If you would like to see the Dallas Museum of Arts Egyptian exhibits as a short clip, you can click here http://www.mevio.com/view/?kId=127368&tId=2.

So we are trying to make the most of the rest of the time that Brandon is out here in Dallas. He is supposed to go back this weekend, and we are very sad. Because it will probably be another month before he comes back out. And that will be to help us move back home. I can't believe that it is almost here, time to come home. So now the dwindling down of our stuff has to occur so that we can fit everything into the van. And what we cannot fit will have to be mailed or left behind. I will definitely keep you updated on how we manage that. Otherwise, everything is great with the family right now!

Until next time . . .

February 25, 2009 - Lots of surprises!

2009-02-25T19:53:00.000-08:00

Ok, so we got some very good news this week. Our house sold. We got the official word last Friday. It was on the market for less than a week. I still can't believe it. It seems almost as if there was a higher power saying, "It's about time you left here, now lets move on". So that is exactly what we plan on doing. We are on track to transfer title on the 30th of March. So we need to find another place. A rental for now, so we can just kind of relax and decide what our next move will be. This whole experience has been a whirlwind for us. And now my poor husband has to pack up our entire house and move into another house by himself, and then come out and help us move back. Probably almost too much to ask of a person. I am so very thankful to have him. And I am reminded every day as to why.

So Brandon won't have to start the move for at least a week and a half. He is here with us. He arrived safe and sound last Saturday. I had told the kids that we were going to the store and then I just took a detour to the airport. They were so surprised! Maddie was so surprised and happy she started crying when she saw him. It was the sweetest thing.

So far we got to go to the Ripley's museum out here in Grand Prairie. We took Maddie and Alex, while Dylan stayed back with Grandma. It is certainly an interesting place. I can only describe it as what I imagine an old time side show would be times ten. It has all kinds of interesting weird facts about odd people and things. They had a wax reproduction of the tallest man to the smallest painting of the last supper done on a postage stamp. Alex's favorite part was the tornado alley exhibit. It simulated the aftermath of a tornado. He says the tornado is bad and that he is going to "spank" it. It was really funny. If you want to see a little bit of what we saw, go see this guy's You tube video clip here (http://www.youtube.com/watch?v=8Zx9xJlAOtk). Definitely worth the visit if you ever pass by one and want to see some weird stuff.

There was also a Tussuad's Wax Museum, which was really cool. It was fun hearing Maddie say "Scawy, scawy". They had wax reproductions of celebrities, a hall of presidents and a short history of the United States and the Bible. I had never seen a wax museum, and I must say that at first it did seem a little creepy, like the eyes were following you around. But after you get over that it is kind of neat. We got a lot of pictures. Some of which I will post at a later date. The worst part of the tour was the "House or Horror" portion. It had rein-actions of a bunch of slasher movies. I, myself, am not a fan of these types of movies at all. I know, I am a big woose, but I am ok with that. So Brandon made us go through it. And Maddie and Alex had their eyes shut the entire time, we practically ran through the exhibit. By the way, we found out later we could've bypassed the whole thing with an alternate door. Ugh, so next time I will be doing that for sure!

As for Dylan's visit this week, everything looks well. He didn't gain any weight, but he is eating stage one baby foods now. Speech therapy came out and worked with him this week and they had us give him root beer and sprite on a baby spoon. I felt a little bit strange doing this, but it was under speech therapies advice so I thought it was ok. He gave that face that babies get when they eat a lemon and then did the body shake, but then he reached out his hands and did the grabbing "give me, give me" motion. So we proceeded. It isn't drinking a bottle, but it is definitely a step closer than where we were. Very exciting.

Until next week...

February 19, 2009 - Paralyzed by the free moment

2009-02-19T19:54:00.000-08:00

Ugh, it seems that these days I still find myself frozen at times. Even after all of the hard part of our journey seems to be over and we are on the downside of our total 4 month stay here. It is true, we have 7 weeks left before we are to move back to Phoenix. But in attaining my ever trusty planner for the year (I know, but better late than never), that I write everything in from time with kids, to current projects, to Dylan's medications and appointments, to meal planning and cleaning routines. Basically if I don't write it down, I don't remember it. It didn't always used to be this way, but with three children clamoring for their every need to be met, thoughts come in and out of the mind rather quickly. So when I do get a free moment, I sit frozen, like a deer in headlights if only for a second. Thinking, "Ok, so what am I supposed to do now". Thankfully, now I can go to my trusty planner and look at the long list of things that I am supposed to do and take the next priority item.

What I find is the hardest is the days where I write in relax. Because now that I am losing my mind, I have to write that in too :) So while I am relaxing, I get that anxious feeling, like I am supposed to be doing something. And then I start fidgeting. Just think of when you were a small child and you would see your mom or some other matronly figure playing with their apron strings, or constantly straightening up in the kitchen. And you were thinking "Back off the coffee/diet coke/fill in the stimulant here and calm down a second already". Now I know why they do that. It is post traumatic stress from having kids. It seems you have to always be preparing for what's next. Because what if you get caught unprepared for the next time you have to go out or there is a catastrophe like say a hurricane or a heart transplant :) The truth is, everything will be ok. It is just funny to view it through another set of eyes now that we are older.

Ah, so for the news for the week. Dylan is doing wonderfully! He had one medication added and one taken away. So things remain unchanged in the meds realm really. He is 17 pounds 9 oz today. He is even eating baby food. Still not drinking though. We could definitely use some prayers/positive thoughts in that arena. For Physical Therapy/Occupational Therapy he is making great strides. He is rolling all over the place and spinning around in circles. He is sitting well, although he cannot get to a sitting position on his own yet. And he is trying to bear weight on his legs when we hold him up. I am sure the upcoming months will have much more news and accomplishments for him.

Maddie and Alex are doing well. Maddie learned to say "I love you" this week. Which always just makes your heart just melt. She is getting so much more cuddly. Although she still always slaps you before she will give you a kiss. I don't know what that is about, but she can do that when she is older if she likes :) I am getting more time to see her sweet personality come out now, which is great. Alex is as always, my little buddy. He goes nearly everywhere with me. He helps out shopping or taking out the trash. He likes it best when I can just sit down for a second and play cars with him. I am very thankful for the one on one time with each of them. Which wouldn't be possible without the help of my dear step mom Esmeralda, who is helping me with all the everyday stuff that seems endless.

On another note of news, our house is finally listed for sale. All the repairs took quite awhile, but it is all done, thanks to Brandon's very hard work. And the house is staged and ready for a buyer. Prayers/postive thoughts here are also welcome :) Hopefully with no one there it will show well and sell quickly.

That is all the news here for right now. I am hoping to write again this weekend.

Until next time...

February 14, 2009 - Ok, there you go making me cry

2009-02-14T19:55:00.000-08:00

I just wanted to write a special blog today. Just to say a big thank you for all of those that have sent gifts and messages of hope and inspiration. They have really kept our spirits up in this very difficult time. Yesterday I got a package from my mom's group. I finally had to break down and cry a little. It was so special getting all the individual messages of praise. It makes all of the hard work seem a little less tiring and it truly makes us happy inside. I don't know if you can quantify true happiness in words. A happiness that touches the heart after such a long journey can be described as nothing less than uplifting. So thank you and God bless! For making our Valentines day and this long journey just that much brighter. We can't wait to see you when we return to Phoenix.

And because it is Valentines day, I have to make mention to my precious hubby. I do miss you dearly. And I am terribly sad that you are not here with me today. I know that these things are usually for a reason. But it doesn't make it any less hard. So again, we miss you! Happy Valentines day! And I can't wait to see you next weekend!

For all of you who have your significant other there with you, appreciate that. And for those that don't, I completely empathize with you. And for all of you single people, complements to you for either waiting for the right person or just taking time for yourself.

And finally one more mention. This is an extra special Valentines day because of the present we received last month for Dylan. When we come back to Phoenix, we will be doing a special theme (hmmm, will it be a heart theme? :)) for his room with all of the stuff that we have received. And I think that the time is coming soon for me to write that thank you note to the donor family. It is taking a lot of mustering up for courage and the right words to put to paper. But I think I can do it over a little bit of time.

I hope that you all have a wonderful Valentines day.

Until next week!

February 12, 2009 - Caught somewhere between my old life and now

2009-02-12T20:19:00.000-08:00

I have been here in Dallas (or Grand Prairie) for quite some time. I am becoming adjusted to my life here with the kids and my step mom. Life is getting progressively easier and more normal every day. It is still a lot harder than I have ever experienced before, but this is definitely becoming my normal. Despite having zero privacy, working every second of the day and barely having a thought uninterrupted, I am getting used to this.

Now we have less than 2 months to go on our journey (halfway there since the beginning in December). And I am trying to remember what I want my family to be, our goals and aspirations as a unit.

The transplant psychologists tell the transplant families that self care is very important, which it is. So I thought I would get lost in a magazine for all of 5 minutes and then write some emails and such. It gave me a chance to dream for a moment.

The simple things are often what I miss. Like the kids having their own rooms. And having my hubby there to help me with baths and such. Even though I am reclaiming more moments with the kids. Like today I got to go over shapes and colors with Maddie. And we practiced "sitting" on her new potty (dressed of course). And Alex got to go for a walk with me around the apartment complex to take out the trash and collect the mail and talk about why we can't go to the sun. Dylan is of course spoiled 24/7. We are constantly sitting and playing with him, when we aren't busy with all the other things that take a mom's attention away.

So I guess now, I can dream of the day that I have my own room to sit and have just a moment of silence in. And because we are officially listing the house this weekend, I can dream about living in a little bit bigger house. With possibly a playroom for the kids, so I can let them dump toys out everywhere for just a bit and I don't have to constantly obsess about cleaning up. I want to look forward to relax with the kids and having a simpler and calmer environment. Even though I am sure that one day I will look back at this moment in time very nostalgically :)

The picture is from the log cabin bed that was constructed in the apartment about a month ago. Because we didn't have the money to buy all new furniture for a temporary apartment, we are relying on the kindness of strangers, in this case the apartment complex. They had this huge bed I will have to post pictures. The view in the picture is from the bed looking down on Maddie and Dylan's pack 'n plays. On the other side of the bed is Alex's bed. The room is nearly like something you would see turn of the century 1800's as far as people packed into a room with absolutely no privacy. Someday soon I will have to write a more detailed account of the transplant experience and the funny stories that go with it, instead of the stream of consciousness week by week writing that I have been doing.

On the Dylan front, he did great at his appointments this week. Things are progressing quite nicely and every day is a day closer that we can back home and be with Brandon and the rest of the family.

P.S. I have been interrupted at least 30 times while writing this (no kidding), which is not altogether uncommon at all. So forgive me if I sound disconnected at times.

February 05, 2009 - Public Service Announcement

2009-02-05T20:20:00.000-08:00

It is again, another very busy week for us here in Dallas. We are getting into our new "temporary" home routine of going into clinic for Dylan's cardiology checkups. Which I may add are going quite well. He is set up with Occupational/Physical/Speech Therapy. Each of which come out to the house twice weekly to evaluate and work with Dylan. On top of the already hectic routine which we hold.

By the way, he is doing quite well with Occupational and Physical therapy. His Physical therapist said that she thinks he progressed what a normal baby does in a month in a weeks time. This made me proud. I was so worried that he would fall behind permanently. But everyone says that these kids are resilient, and they are!

We started Speech Therapy today. Dylan has lost his suckle reflex over the past two months of hospitalization. This may not sound like a big deal, but it does affect how he eats, drinks and speaks in the future. So we are going to reintroduce the pacifier. It seems like everyone is trying to get their kids off the Binky at this age, and here we are starting it. But this should help his jaw and tongue muscles to build up so that he can start drinking again. Either that or we have to go directly to the sippy cup, which is not altogether unheard of.

So as for the Public Service Announcement. I went to the drugstore to get a thickening agent for Dylan's formula that Speech Therapy recommended. I took Alex with me, just to get the poor kid out of the house. He is going stir crazy being trapped in the apartment. All for the sake that none of us get sick and pass it along to Dylan. And be minded this is just for the first three months that we have to be uber strict on this. Although if you are sick in the future, please do refrain from coming around Dylan. Which brings me to my point. If you are sick, generally you shouldn't be around anyone. You should be at home RESTING, right? So back to my point, we are at the drugstore about the pass the toy aisle, which Alex is bound and determined to peruse. There is another little boy there also looking at and touching all the toys. The mom starts getting very anxious and tells us to stay back they will go to another aisle and wait because her child has chicken pox. My mouth just dropped. Who brings their kid, with chicken pox, to the store and lets them touch everything in the toy aisle? Ugh, needless to say I was disgusted and a little frightened for Alex. Even though he has had the vaccine, you never know, right? So for all of you who take your kids out sick (I used to be guilty of this too), stop and think before going outside. I know sometimes you have to go out. But think, there may be a immunosuppressed little boy out there that something common like chicken pox or the flu could land them in the hospital, lead to rejection, another transplant or worse case death. So there it is, may rant of the month. :)

I hope everything is going great for all of you out there. I will try to get new pics of Dylan tomorrow. They took of his steri strips on his heart incision today. You will not believe how good it looks. The surgeons at Children's are nothing short of genius.

Until next time...

February 01, 2009 - Afterthoughts on the game

2009-02-01T20:21:00.000-08:00

Ugh, well as you guessed I am a little depressed about the Cardinals losing the Superbowl. I am still very thankful at all the miracles we have encountered and still expect amazing things out of this year. But the Superbowl loss is almost exactly like the proverbial lottery ticket I was describing yesterday. It is fun to dream, but in the morning you are usually still poor :)

This still provides us with a great lesson though. The lesson of hope. That hope makes you believe you can accomplish anything. And in some cases, like with Dylan, helps you achieve what you thought was impossible. If you would have asked me a year ago if I would uproot my family, move to a different place for any reason I would have said "No way". We get so used to our comfort zones that we are afraid to step outside of the box. This experience has let me realize that I am capable of so much more than I thought. So instead of being trapped inside my so called reality. I am going to try to be more.

And I will continue to hope. Because I have witnessed miracles happen first hand. And there is always tomorrow to witness some more.

Until next time...

January 31, 2009 - This year is off to a great start

2009-01-31T20:21:00.000-08:00

I am just sitting here in retrospect of the month past and pondering what could be in tomorrow's Superbowl. I am sitting here hoping and dreaming about a Cardinals victory in the Superbowl tomorrow the same way you fantasize about winning the lottery when you buy a lottery ticket for a really high jackpot. It is a lot of fun to anticipate what could be.

And in having those thoughts, I just have a really good feeling. At all the really miraculous things that have already happened this year. Especially with Dylan. He gives me hope that absolutely anything is possible. So instead of feeling a little sorry for myself that I won't be watching the game with my best friend, fellow cardinals fan and the man I call my husband, I am going to just enjoy what might be. I get the feeling that this year has many amazing things in store for all of us. So I am excited to see what those things might be.

Other than these hopeful ponderings. Dylan had clinic on Thursday and Physical Therapy evaluation on Friday. Both went really well. His progress looks to be right on schedule so far.

Also two requests. Again my last request for anyone in the Phoenix area that is willing to be the head PR person for Dylan's COTA campaign. It is more of a title thing than anything else. We are raising money for expenses already incurred and expenses in the future. Just because the transplant is over, doesn't mean the rejection issues are. Our PR person would just be in contact with those raising money for the campaign. That is all. It is also something you could put on your resume!

My other request is for a label maker. I know that a lot of people get these on occasion for Christmas, they use them for a year and then never touch them again. If you are one of those people and are willing to part with your label maker, we would appreciate it. We are needing one to label the gizillion and one syringes that Dylan needs every day for medications. Just let me know.

Also, all the January pics are available (http://picasaweb.google.com/mc12041/January#) .

I hope all is going well for you and let's all have hope for a Cardinals victory! Go Cards!

Until next time...

January 27, 2009 - Therapists abound

2009-01-27T20:22:00.000-08:00

Today we had our first evaluation session at our temporary home in Dallas with Dylan's occupational and speech therapists. Let me say that I am so glad that they come out to your house. It was nice not to have to go outside today. The temperatures are below freezing and it is sleeting. This is quite a change for a Phoenician such as myself. However, I do like the change. It is nice to "know" what winter feels like. I do often miss the seasons.

The conclusion from the therapists visit was that Dylan would undergo another swallow study. Which is just a longer evaluation. If you visit prior blogs I talk about this more in depth. And that Dylan's therapy would start on Friday. Occupation therapy will be working on his reaching and hand and motor skills.

Other than that just a typical day. I will have to describe what a typical day is for us now in a future blog. It is quite different than it used to be.

On lighter note, my son has fallen in love with Dora. Dora is a cartoon character on Nickelodeon for those of you who don't know. He loves her despite her enormous head, the fact that she screams all the time and her clothes never fit. Can you tell I am not a fan of Alex's new girlfriend :) He even calls her his girlfriend. Oh well, I am sure this is just the beginning of characters that Alex likes that I won't exactly approve of. I am just taking comfort in his toddlerhood still. The fact that I still have control. I can still watch him with perfect contentment as he sleeps at night. And that he will actually do what I say because I am Mommy. Oh, the joys of young children.

Until next time...

January 25, 2009 - Keeping busier than I thought I would be

2009-01-25T20:24:00.000-08:00

No doubt that I knew that I would be busier than I have ever been in my life. But I could not have imagined a schedule like this. As I am writing this blog right now. Dylan is crying himself to sleep, as he often does because he is used to all the attention from the hospital staff. So I am still having to get him adjusted to regular life here with us. And when I came in to begin writing the blog, I found the keyboard had three keys that had been popped off. I looked over at Alex and he says "Don't be mad Mommy!", leaving no doubt as to who the guilty party was. I sit here in a darkened room with my three children. Two of which are giving me a hard time. But I am still ever so thankful, despite all the yelling (and in Alex's case minor destruction) for my family. I just miss Brandon so much.

The last few days since Dylan has been released has been me flailing around trying to restore any sense of balance for both the kids and my sake. It literally takes me about 30 minutes just to draw Dylan's medications. He has 13 in the morning, 8 at night and 6 others at various points throughout the day. I have to check and double check the specific medications and all the doses because if I forget to give him one or another he could have organ rejection. I have to set 5 alarms on my cell phone just so I won't forget what time he gets them. These things on their own are not impossible nor inconceivable for me. What is hard is juggling normal family life and being a full time nurse. That and Dylan has become adjusted to sitting with help all of the time. Which would be a big deal if we had gotten the Bumbo we ordered. But the UPS guy decided to drop our package off at the wrong place (which someone else signed for our package, how rotten is that) and we had to get the company to send out a replacement which will be here on Monday, fingers crossed.

For those unfamiliar with the Bumbo, it is the awesome new seat for babies that allows them to sit upright even if they do not have the muscles built up to do so yet. The physical therapists said it would be highly beneficial for Dylan. So I ordered one.

Now where was I? Oh yeah, Dylan refuses to be put down, Alex won't sleep and I have a bizillion things to do. Ugh, sounds like the common arguments of many a mom before me :) Even though the medications and Dylan's situation add another level of complexity to this common problem, I will find a way to prevail. I just know there is a lesson to be had in all of this.

Sorry for the long diatribe on my plight. But I just had a vent a little. We all need to vent every now and then!

And yes Maddie is still here. She is just not causing any problems at the moment :) She is learning to sing and dance, which is terribly cute. So she is getting lots of hugs and kisses from me!

Now I am so very thankful for many, many things also. Most recently the powerful support network of family and friends that has come to our families aid. I cannot thank you enough. We are finally getting our COTA page set up for Dylan. The rough draft can be found here (http://cota.donorpages.com/PatientOnlineDonation/COTAforDylanThomasM/). The lifetime goal refers to the amount raised over Dylan's lifetime for medications, so don't let the amount scare anyone. It is actually quite low for someone having been transplanted. COTA is a great fund raising organization for transplanted children. They ensure all funds donated are used toward medically induced expenses. And all donations are tax deductable.

Tomorrow we have our first official clinic. And Tuesday is Dylan's home health evaluation for physical/occupational/speech therapies. I will write again on Tuesday.

I am going to try and start making calls out to everyone soon. Be patient, Alex yells at me while on the phone, which is something we are working on. But until that is resolved, I am finding creative ways to find time to talk.

Until next time. . .

P.S. The picture is from Skype webcam with my mom from earlier today. You can Skype me @ melissa.mcqueen2

January 20, 2009 - Dylan is coming home!!

2009-01-20T20:24:00.000-08:00

Sorry I haven't been writing in awhile. I have just been getting used to the prospect that Dylan is all better. We have been busily learning all the new medications and precautions that he will need post transplant. And we have been notified that he will be coming home with us, Wednesday, which is tomorrow!!! I hardly know what to do. Yesterday, I spent the day cleaning and preparing for him to come home. Not that it was that dirty, but I just had to get everything in its place. And I am sure that tonight when I come home I will be running around with a Lysol can as if I was a obsessive compuslive person.

The other miracle this week. The Cardinals are going to the super bowl. I cannot believe it. Still after two days I am in utter shock. It is crazy to think the ONE year that we aren't able to renew our season tickets because of Dylan's condition and look what happens. I will take it. We have sat through TEN YEARS of near heat exhaustion to watch some of the most creative ways to lose ever. And the last few years of turn around have been nothing short of amazing. When we were amongst the local Dallas crew (being spoiled with all of their super bowls) and I had only my husband to celebrate with. No one really understood why we were just a little bit emotional.

It was only one of the best weeks of our life. I don't know that I could do this whole week justice with words. But over the next few weeks, after I finally get some rest and and routine, maybe I will be able to account for all the little moments. The little miracles that led up to the big one, Dylan's heart. And maybe finally I can take my big sigh of relief.

Don't worry there are more pictures and info coming soon.

Until next time...

January 14, 2009 - The breathing tube is out

2009-01-14T20:25:00.000-08:00

Hurray! The breathing tube is out. From what I have heard Dylan is recovering very quickly and doing extremely well. We are so very thankful for all of the staff at Children's Medical Center in Dallas for making this all possible. All the nurses just treat Dylan like a little king. I don't know how I will replicate any level of attention that he is getting here. All the surgeons, doctors, nurses and staff have made our stay here comfortable and as seamless as a transplant can be. We can't express in words how great everyone has been.

If you are interested in what actually happens during this procedure, I actually found a small interactive animation on PBS Nova's site (http://www.pbs.org/wgbh/nova/eheart/transplant.html). It is so very interesting and fun to play around with the animation. It makes the whole experience a little more real.

We are hoping for more news tomorrow.

Until then . . .

January 13, 2009 - Dylan's new heart is a success

2009-01-13T20:26:00.001-08:00

Dylan just got back from surgery and recovering in the ICU. He is doing well and all the nurses and doctors were very excited at his amazing recovery so far. He is still on a breathing tube, but that should come out shortly. I am exhausted as I have been up since 3 this morning. But I will try to post tomorrow. Thanks to everyone for your prayers and positive thoughts. Keep Dylan's donor family in your prayers now as they have had to lose something terribly precious to them, but still decided to make something positive. And pray that Dylan continues to recover well so that he can do his new heart justice.

Thanks again!

Until tomorrow . . .

January 13, 2009 - Dylan is getting ready to receive his new heart

2009-01-13T20:26:00.000-08:00

That's right. It is 3:00 in the morning here. I am getting ready to head to the hospital to help Dylan prepare for his new heart. Please, please keep us in your prayers. I will write back as soon as I can. In the meantime feel free to call / text / email me.

January 09, 2009 - We moved out of the ICU

2009-01-09T20:29:00.000-08:00

We are officially moved upstairs today. I am hoping to post more info tomorrow. But now I can receive cell phone calls again. So be patient, I am trying to get in touch with everyone.

Thanks to everyone that has sent things so far. I will be getting in touch with everyone individually!

Until next time...

January 06, 2009 – Up and Down

2009-01-06T20:30:00.000-08:00

Ok, well the rumor is that Dylan is getting moved up to the 8th floor today. This is a good thing. It means that he is stabilizing a bit. But we are still going to limit visitors just a bit. I just want to see him get into a routine up there before we change things up for him. Hopefully we can wait up there until he gets his new heart. But as the nurses tell me, his condition could change at any moment and then we will be back in the ICU.

Some more news. We put in the paperwork for furniture yesterday. We are hoping to hear when we can expect to receive it. In the meantime we are in virtual state of camping style living. Which as embarrasing as it is, is our current reality.

January 02, 2009 - Just a smile

2009-01-02T20:31:00.000-08:00

I was just sitting in the ICU playing with Dylan when the cleaning lady walked in. I normally smile at her and she smiles in return and then goes on dutifully with her work. But today she spoke with me. She is from a country in South America, I didn't quite catch which one because her accent was a little thick. She told me that the other day she had walked in and peeked in on Dylan. He saw her and instantly had a wide smile on his face. She said that she thinks that he smiles because I smile. That he learns this behavior from his mother. She told me that in her country they discipline by yelling and such. But she decided that she was going to set a New Year's resolution to smile and notice the good things her children do. She is tired of yelling. And that if Dylan and I can keep on smiling and continue to be happy despite our situation. Then she can too. I thought that was very inspiring to me as well. I try so hard to be a positive role model for my kids. Sometimes, even I do yell. But I try each day to be better than the last. Me and Brandon got a lot of our techniques from a class that we found online. It is located here (http://ocw.usu.edu/Family__Consumer____Human_Development/oer-power-of-positive-parenting/power-of-positive-parenting/Course_Material.html/) if anyone is interested in parenting without yelling for all ages.

Other than that Dylan is hanging in there. They did have to increase his Milrinone to the max, which is 1 ml. So they tell me there are other medicinal therapies they can use after that to keep him going until his new heart comes. We will keep praying.

Until next time . . .

January 01, 2009 - No news is good news (so far)

2009-01-01T20:31:00.000-08:00

Well it's been a few days and we are still stable and in the ICU. Which is better than being worse. So we are quite happy with stable.

We are still patiently awaiting someone to donate. So keep us in your prayers.

We are also still waiting on Internet service, which I guess won't be in place until next Tuesday. I was not at all impressed with AT&T internet customer service. Only the last representative knew what was going on at all and the poor thing had to correct a slew of mistakes made by her coworkers. I won't get into the whole thing, but it managed to chew up a ton of cell phone minutes for a bundling package that I don't need or want. So finally we were able to talk them into internet only.

Alex and Maddie got to come out and see Dylan yesterday. They had a blast seeing Dylan, playing at the playground and in the play room upstairs. Next time they are out I am going to take plenty of pictures. And hopefully once our internet is available again, I will be able to post the pictures from the last 3 weeks.

I hope that everyone had a safe and happy New Years celebration. I wish for this year to bring all of us amazing things. Happy New Year to everyone and may it be the best year yet.

Until next time . . .

December 28, 2008 - Finally getting settled in

2008-12-28T20:32:00.000-08:00

Hi, Dylan is still in the ICU. Although he is looking much better. His heart rate is down and his levels are evening out. Hopefully this means he will remain stable. And the possibility of him moving to a regular hospital room is open again. We shall see how it turns out. Until then we just sit and wait and hope that he can remain stable until his new heart arrives. Please pray that someone chooses to donate sooner rather than later.

Brandon had to go back to Phoenix yesterday to get ready for work and to start getting the house ready to sell. If I haven't mentioned this before here on the blog, we have decided to sell the house in hopes of getting something bigger when this is all said and done. We thought there wouldn't be a better time to stage the house than when almost everyone is out of town. So if anyone wants to lend a hand to Brandon with fixing things up, packing or staging the house just let me know. It would be a great help to him.

I was so sad to see him go. Now it is me, my wonderful step mom Esmeralda and the two kids. I plan to come to the hospital for about 7 hours in the morning and afternoon everyday. Then I will spend the late afternoon and evening with Alex and Maddie. It is kind of like a job, where you have to leave them for daycare. I felt like I was abandoning one or the other of the kids constantly. But I have decided to look at it a little differently. Because I am leaving one to see another, not to go to work and then miss them altogether. I hope that makes sense.

We mostly got the apartment set up over the past few days. With the charity of some very fine anonymous donors from the hospital we were able to mostly furnish the apartment. We will have to wait a few days for furniture and one week for washer dryer rental. It is funny, when we were at Walmart picking out so many new things for the place. You forget how much around your house that you take for granted, but use on a consistent basis. There are so many little use things that you have to get to run the household of today.

If you would like the address to our new place to send us anything feel free to write my email address or comment on the page and I will get that back to you. Right now we can use gift cards especially to Walmart, since there is a supercenter close by. Also any comfort items like cookies/candy/goodies for the kids are always appreciated. They love to get those things in the mail.

I will try to get some pictures to post soon. I have to get our internet hooked up this week. I can check email at the hospital, but the blogs are blocked. So I am sending them to Brandon so that he can post for me. When I get internet this week, I will be able to post pictures again.

I also want to give a big thanks to all my family and friends that have come by to visit and helped out. We so enjoyed seeing all of you during this holiday season and difficult time for us. It is good to know that our close family and friends will rally for us when we are in a time of need. We very much look forward to the day when we can return the favor.

I will write again tomorrow to post status and probably every other day until we get the big news regarding a heart. Please keep us in your prayers!

December 25, 2008 - Merry Christmas

2008-12-25T20:33:00.000-08:00

Merry Christmas everyone. Today has been quite busy and tomorrow will be busier. We were at the hospital most of the day. And Santa did come to visit. You should've seen Alex's eyes. They were wide as saucers that he was meeting the real Santa Claus. Santa brought all three kids lots of presents this year. They got wonderful presents from all of their grandparents as well. So we will just say they didn't go without. I was a little afriad with our whole situation. But family certainly did come through. We ended up eating Christmas dinner at the hospital. They had prime rib (vegas style, which means roast beef), which was good. We wanted to stay close to Dylan under the circumstances.

Dylan seemed to be doing much better today. He was aware and looking around. He also looked pinker. And he actually was laughing today. These are all promising things. Hopefully that is good news for moving back upstairs in a couple days.

Tomorrow we will be bringing the rest of the stuff to the apartment. We are also making a trip to Walmart and Ikea to buy the remainder fo the things we need for the apartment. So hopefully that can happen in the morning. And then we will spend the afternoon with Dylan and then the evening with Brandon. I want to spend one more night with my hubby before he leaves for an indeterminate amount of time.

I am hoping to update again in a few days. I hope everyone had a great Christmas.

Until next time . . .

December 24, 2008 - Christmas Eve

2008-12-24T20:34:00.000-08:00

So here we are at Christmas Eve. I feel like we are being cheated a little bit. But then I look around the ICU and see how selfish that feeling is. So I am so very thankful that we are all together. It could be much worse than it is. Dylan is not doing great, but he is stable. There are still many things that the doctors can do before things get really bad. He is breathing on his own and he is still aware and looking around. Although he does sleep most of the time.

If things get really bad, we found out today that we were approved for the Berlin heart. It is a sort of mechanical heart that exists outside of the body that gives the heart a chance to rest. Feel free to Google it. It is not FDA approved, so you are only allowed to use it on a per case basis/ or for compassionate use. So we are so very thankful to have that as an option for bridge to transplant should we need it.

Tomorrow is Christmas. Our rough plan is as follows. We will probably wake up and open some presents. Then we are going down to the hospital around 9:00 am. I hear that Santa comes in the morning. So we are going to try to make it in time for that. Then after that maybe some lunch and then back to the ICU with Dylan. Say a prayer for us. We are asking Santa for a new heart. If not tomorrow, really really soon.

Until tomorrow . . .

December 23, 2008 - Dylan in ICU

2008-12-23T20:35:00.000-08:00

Dylan is struggling a lot these days. He can't seem to keep any food down and he is starting to expierence some significant pain. He is in the ICU and appears he will be there indefinatly at this point. Its hard to know what the future holds but as the doctors keep saying, that is why he is listed as the highest priority for a new heart. We can not use our cellphones in the ICU so please understand if we can't get back to you quickly. We will keep checking our messages periodically so don't think we are ignoring you. :)

December 21, 2008 - Another exciting day

2008-12-21T20:36:00.000-08:00

Hello everyone. Today was an up and down day. We thought that Dylan might be moved to the ICU. But thankfully once his feeding rate was reduced, be was less fussy and stopped throwing up. Every day that we can get by with him at a reasonable level is a good day. The last thing that we want to see is a decline in his health.

On a more positive note. I am so happy to have the kids and Brandon here. I have missed them so very much. Even though this will be a very unconditional Christmas. The fact that we are together will make it all that much more special.

I was hoping to post some pictures. But I have been unable to yet. Hopefully sometime this week. I will keep updating as often as I can though.

Until tomorrow . . .

December 20, 2008 – Anticipation of a very special arrival

2008-12-20T20:36:00.000-08:00

I woke up a little early today in the hospital. I am very excited today, as it is the day that Brandon, Alex and Maddie are arriving to meet Dylan and I in Dallas. They are driving in from Midland today. It has been a very hard trip for them. I don't know many Dads who would voluntarily go on a three day road trip with two under the age of 4. I have been telling everyone that he deserves the "Dad of the Year" award for this one.

On another front, we were finally able to find an apartment here. Unfortunately we have to go sign papers the minute after Brandon arrives in town. Not convenient, but nothing about this experience seems to be very comfortable. We are just thankful to have a place to stay. The apartment rents to heart transplanted patients and their families at 50% off. This is very helpful considering all the expenses we have incurred so far. Another caveat of the plan, the place is unfurnished. So we will be scrambling to get some things for the place so that it isn't too uncomfortable. Our social worker from the transplant program was able to procure 7 items of furniture from the local furniture bank. Which is great news. Now we just need to find a TV and some blow up mattresses for the kids. This will indeed be an adventure.

As for Dylan, it looks as if he will be in the hospital for at least a few more days, if not a week. If we are here for Christmas, they say it is quite a sight to behold. Santa comes and visits the children and their siblings. To be honest, I almost hope that he is here for Christmas. With all the chaos of things, we don't have a tree or presents. All my planning and energy that usually goes into our holiday celebration has been tapped out planning basic living means. So we will see what happens. I will certainly keep up to date here. Also you can always email me or call if there are questions.

I will try to write back tomorrow.

Until then …

December 18, 2008 - Update and test message

2008-12-18T20:38:00.000-08:00

Ok, it seems I cannot access my blog from the wifi at the hospital. However I did read about "moblogging". I can still post to my blog via email or mobile phone. So here it goes, I hope this reaches you all well.

Wednesday:

Well, we went in for a check up and ended up with a stay in the ICU. When we came in with Dylan on Wednesday, he had been very fussy for about 36 hours and throwing up a decent amount. So when I brought him in for his appt, they decided that he needed to stay in the ICU to be put on the medication Milrinone. He seems to be getting better now. But not well enough to be off the medication. His heart is now taking up about 70% of his chest width. So hopefully he will be happy and not throwing up, which means he can go up to a regular hospital bed tomorrow. I am very much hoping for this because I am currently sleeping in the most uncomfortable lounge chair of all time. And I guess that I am lucky to have this. I could be sleeping in a regular chair.

Thursday:

Also Dylan got a PIC line today. He had to be put under for this procedure. But at least now they can just take blood draws without him feeling a thing. So because he was rehospitalized, his transplant status will be updated to status 1A.

Yeah!! We got a room change. Although I will still be in the hospital with Dylan, at least I get to sleep in a real pull out flat bed. I am so excited!

Hopefully I will be able to give updates tomorrow.

Until then. . .

December 15, 2008 - Quick Update

2008-12-15T20:39:00.000-08:00

Looks like I have a minute, so I will give a brief update. I am getting things organized here for the arrival of my most precious packages, my hubby, Alex and Maddie. We have our next appointment on Wednesday. They are just keeping a close eye on him until we get the official call.

Today I spoke on phone with speech therapy. It looks as if they are going to get his feeding therapy going again. The doctors told me last week that they didn't want Dylan to fall behind on his milestones. They tell me that the healthier and farther along they are at transplant, the better their prospects are when they recover from surgery. So I thought that was quite promising. Hopefully they will let us know when it starts this week.

Tomorrow I am going to start filling out fundraiser paperwork for Dylan. I know that a lot of friends and family have asked me how they can help. If anyone wants to help with PR in the Phoenix area, please let me know. I am currently trying to set up a team for Dylan's COTA campaign. They assure me that you need no experience and that they give all the ideas and support. I just need help with the processes. They don't want direct family to be involved because they want us to be there for Dylan and the other kids during this time. Which I completely agree with.

I think that is it for now. Except that I miss half my family so much. And I can't even bear to think about Christmas or else I start to get upset. I have to just keep reminding myself that we can celebrate the true meaning of Christmas. Just to be close to each other and celebrate the season with each other's mere presence.

I will write again Wednesday to be updating you of not only my adventures, but soon Brandon and the kids road excursion tales :)

Until next time . . .

P. S. The picture listed shows the official pager we have for Dylan's heart transplant.

December 12, 2008 - The evaluation is over

2008-12-12T20:40:00.000-08:00

The evaluation is finally over. And we are being listed as we speak. We are being listed at 2 first. This is the lowest listing for heart transplant. But we are assured that it won't be long until he is moved to 1b. 1A is the highest status listing for heart transplant. This is reserved for babies that are hospitilized and on life support. I can deal with 1b, I am very thankful he will be in that area. That allows us to have a little breathing room while waiting for a heart.

So now the backstory of what has happened over the last week. Sorry I wasn't able to post everyday. I was much busier than anticipated. Getting Dylan through this evaluation was harder than full time jobs I have had in the past.

So Monday started the day at 8:00 am. I met with some of the transplant doctors and nurses. I also got to meet with the doctors and nurses that were doing his heart catharatization. So most of the morning was blood draws, X-rays, and the meet and greet. The staff here was extremely nice. The only problem this morning was when they were trying to draw blood. Since Dylan wasn't allowed to have any fluid, his veins were very hard to get to. They had to poke him 3 different times to get any amount blood out. This afternoon he went in for the heart cath. So for the first time in forever, I got to relax. I just sat there in the doctors office and literally zoned out. It is hard to relay how time consuming this all is. Most days, at the end of the day I try to think back on what happened. It seems like I am on autopilot a lot of the time. I always wanted time to enjoy my family and kind of savor the moment.

As for the results of the heart cath, he did very well. He recovered at the hospital all night while being monitored. He was still quite drowsy from the anesthetic. I was drowsy from the long day.

On Tuesday, I spoke with most of the transplant team. Psychologist, social workers, financial representatives, and more doctors and nurses. I was asked a ton of questions. Things like "How do you handle stress" or "How are the other kids handling this". Although these questions seem intrusive. I know they are trying to see how the family dynamic works and if it will be able to sustain heavy medical needs and financial drain over the next year. So I do understand why they do this. By the way, I think we were deemed fit to handle the situation :)

On Wednesday, we got all of Dylan's new medical equipment.

On Thursday Dylan had his MRI. The hospital just wanted to make sure that his brain was working correctly before all this surgery. So that was also a long process because he had to have anesthetic. And anesthetic for a cardiac patient requires a specialist. So we were there from 8:30am to 6:00pm for the entire process plus some more meet and greet with surgeons and such. The transplant surgeon was very generous to sit down with us and explain exactly how the transplant happens. I don't remember it, but maybe I can find a quick write up in case anyone is interested.

So now I have the pager. I will post a picture at another time. From what we understand it will be a very long wait. But a very worthwhile one. So here we start the next phase of our journey. I wish I was a little more eloquent this time. But I am so tired. I will probably still be posting weekly up until the actual surgery.

If anyone has called home, sometime this week I will try to change the answering machine message to get my cell phone on there. Also, I am trying to check email daily. So I will try to get back to you as soon as possible. Be patient with me and our little adventure.

Also, I forgot to post our family pictures we got. Alex decided that he wasn't going to smile normally and that he would try to be funny. Maddie was just in a bad mood, or should I say sad mood. She was crying so hard at points her little lip was quivering. I think she was upset over all the stress of the situation at hand. But despite all of the stress, we did get the pictures. They are not perfect but you can see them in the following location:

go to http://www.thesmilestation.com/ and enter the following:

Customer Name: MELISSA MCQUEEN
Access Code: LTTT0862104575TAR

Until a little later . . .

December 07, 2008 - We are here

2008-12-07T20:40:00.000-08:00

We are in Dallas safe and sound. Tomorrow is the beginning of the heart transplant evaluation. I will write more then.

December 02, 2008 - Lets get this ball rolling

2008-12-02T20:41:00.000-08:00

So pictured above is Dylan in his most recent hospital stay. He was released the Wednesday before Thanksgiving. We were so thankful that he could spend the holiday with us. His ejection fracture was increased from 6% to 24% with meds. But he is still not doing well. Just well enough to come home temporarily and spend time with us. We had a wonderful Thanksgiving with our family. A lot to be thankful for this year. A lot of scary stuff ahead. I never even imagined our life would take a detour like this. I feel like I am living some Lifetime movie of the week. It is all so surreal.

So after Dylan's cardiologist appointment this past Monday they definitely want us to proceed with the transplant evaluation. We booked our flight and are set to make our Monday appointment at the hospital. So we will finally see if Dylan is listed (which I am assured he will be) and at what status he will be listed. I will write when I can, I know that there is wifi at the hospital, so we will see how that works out.

The things I am most terrified of. Making the flight with a sick baby. Getting through security with all of my stuff for Dylan. And most of all 2 weeks apart from my hubby and precious babies Alex and Maddie. I am scared of the roadtrip that Brandon has to make with the two little ones by himself. I am scared of what they will find with Dylan. I absolutely hate the unknown. I am a natural planner and like routines and such. This is all craziness for me. But sometimes you have to let your worries go and give it up to a higher authority. That is all I have the strength to do right now. Keep us in your prayers over the next few weeks.

I will certinaly keep everyone updated!

Until next week. . .

P.S. Happy Birthday to me this Thursday. Thankfully I get to see my family and celebrate my bday with them :) Sadly I have to leave soon after and I get a year older :(

November 21, 2008 - The time is near

2008-11-21T11:23:00.000-08:00

Ok, here we go unscheduled blog entry generally equals some unexpected news. And that is certainly the case now. Today Dylan had a cardiology appt because our transplant nurse saw him on Wednesday and was a little concerned with how he looked. I will get more into what we discovered at the appointment in a moment. Once he went in today to his appt his ejection fracture was 6%, which is incredibly bad. So they decided to hospitilize him for a few days to figure out what is going on and to get his heart a little stronger. If he declines further he will be sent out for transplant immediately. If he recovers a little he can come home for Thanksgiving and then we will have to fly out to his transplant center the weekend after Thanksgiving. Not a whole lot of notice, but then again, it is a heart transplant we are talking about. The worst part of his day was probably getting a pic line in. Before hand the nurses placed warmed diapers on the area to be poked so it wouldn't be so bad. He looked so cute there with these diapers on his arms and legs as if he were going to go out and do some baby sumo wrestling. My only regret about it is that I didn't have my camera. But I think I will be taking my camera with me everywhere now.

So tonight Dylan is in the PICU at Phoenix Children's and his daddy is hanging out with him for the night shift. We are praying we can spend Thanksgiving together. And we had planned a family portrait the day before Thanksgiving, so we are praying we can keep that appointment as well.

So at the meeting with our transplant nurse, a really super nice person by the way. We talked about next steps. Because our insurance prefers using certain centers of excellence, we had the choice of 12 centers in the US. After a lot of debating, we decided on Dallas. I never thought I would be living there again, if only temporarily. Not that it is a bad place, just an unexpected situation. We are just preparing our family for the next steps of temporarily moving out there now and what to expect in Dylan's future. I will certainly write more updates as they come, so expect the blog to be updated more often.

Also, I was able to finally acquire a laptop so that I can continue blogging through this process. If you are ever looking for a reasonably priced laptop, try Dell Outlet, they have some really great deals there.

I am going to get some rest as I am emotionally and physically exhausted. Keep us in your thoughts and prayers and remember to be thankful for your family this Thanksgiving!

Until next time . . .

November 16, 2008 - Preparing for our future

2008-11-16T11:25:00.000-08:00

This last week was another busy one. I guess that I should just get used to this new reality of things. And much more hectic to come. This week we had a physical therapy appt for Dylan on Wednesday and his well check on Thursday. At first I was confused that he was getting physical therapy. I have submitted to the fact that Dylan will need a transplant. So I didn't see the reason why we would want to get him worked up when he fights to do the most basic of things like eat. But I decided to go ahead and go. His therapist was very kind as much of the staff is that we have encountered so far. She explained that she was going to check his milestones so that she could direct us with some easy exercises to keep him on track even though he was going to be going through transplant. This would help his recovery post transplant as well. She went over Dylan's medical history, asked how he was doing at home and then she literally just played with him on the floor. It was so neat to witness first hand. She set toys just out of reach and he reached for them. Something that I was not always aware of at home. With two other kids, I am just trying to keep Alex and Maddie from stumbling over Dylan most of the time. She also placed him in front of a mirror. He lifted straight up on his arms and smiled ear to ear at the image in front of him almost as if to say "Hello Handsome, where you been my whole life". It did make me laugh, something I try to do as often as possible with the kids these days. The only milestone that he was falling behind on was sitting. So she gave us some exercises to get his core abdominals a little more in shape so that he could sit properly. We are supposed to hold him by his lower back facing toward us and then lean from side to side so that he can practice balance. Overall she was quite pleased to see his progress despite his declining health conditions. So I took it as a bright spot in his week.

On Friday Dylan went to his well check to get a slew of shots one of them being the flu shot. He has had a cold for a few weeks and has been refusing to eat at all. On top of that when we do feed him via the NG tube half the time he throws up. This is highly concerning because it was leading us to believe that his overall condition could be deteriorating. Our pediatrician assured us that it was probably just the cold. Just after that reassurance when the he was checking out Dylan's mouth he got yacked on. I felt awful, but luckily our pediatrician has a great sense of humor and said it was one of those hazards that come with the job. Other than Dylan's obvious affliction he looked good on this visit. So we set up his next well check and a Synagis shot for next week. I had to educate myself on this shot as I had never heard of it before. I hope that none of your children are ever sick enough to get it. From my understanding it basically prevents children from getting RSV or Respiratory Virus. It is only given to severely sick children with need. It costs $1000 a shot to the insurance company. Patients have to receive it once a month during cold and flu season. Because Dylan will be patiently waiting for his transplant he cannot be sick beforehand. If he comes down with a bad cold or a bad case of the flu the next child in line would get the heart. So that is what is upcoming in the next week.

We also got a call from the transplant nurse out of Dallas. She was so sweet. She just gave me a courtesy call to let us know that Dylan's case would be under evaluation with the surgeons in that center this week. They are going to look over his case and get back to us this coming week to let us know if and when they can accept him. From what I understand there won't be much of an if involved, just a when. I was very comforted to know that we are finally taking steps forward in this process which I haven't even had time to wrap my head around yet of the logistics. We have yet to hear from the Seattle team yet.

This week I also was given the opportunity to speak in front of my mom's group about Dylan's situation. Anyone that knows me, knows that public speaking is by far my greatest fear. But when it comes to speaking about something of this magnitude, a calm fell over me. My mom's group is quite large, maybe about a hundred people. I spoke about his situation and how we came to his point and where we are going. The group prayed for Dylan and was very open in offering help of any kind. This is always appreciated. I was glad to know that Dylan is in the hearts and minds of so many. Being entrenched in a situation like this almost puts blinders on a person as to how amazing this story is. If I were to hear this story from someone else I would be floored. But living it, day to day, you just accept it as normal and something that you must persevere through. I still have to remind myself everyday to accept help where it is offered.

On another note, I am so thankful for my hubby. Out of nowhere he bought me a spa package. He tells me that knows what I am about to go through and he needs me well rested for things to come. The topic of my last mom's group was respect for your husband. They spoke of how most husbands on TV are portrayed as bumbling idiots. Which in retrospect is quite true. But that is not reality at all. Through good times and bad, my husband has ALWAYS been there. He is my rock and I could not get through this without him. I am scared to death to think of leaving with Dylan for his transplant knowing that Brandon will not be able to be by my side the entire time. We talk about everything together, he is truly my best friend. And every time we are presented with a new challenge he rises to the occasion. I hope this journey will strengthen our bonds. And I will always give him the respect and compassion he deserves. If you are reading this go and hug your husbands, boyfriends, significant others ...whatever. Think of all the people that are separated for many reasons beyond their control. Let the men in your life know what it means to you to have them by your side.

Next week we also get to have a sit down with Dylan's transplant nurse out of Phoenix Children's. I am very excited about this. She has been so informative and helpful so far. I will definitely give an update next week of her findings.

Also keep us in your prayers and say a prayer too for all those heart moms and dads and siblings out there going through the same thing. In the meantime, I will continue to share this unfolding drama.

Until next week . . .

P.S. The picture shown this week is Dylan's new nappy time place while he is on the feeding tube in the living room with us. He has grown out of his swing and bouncer, so we had to make a makeshift place for him. We thought it was cute to have him in his brother's little red wagon. Don't worry, despite the boppy pillow he can breath just fine and is monitored the entire time he is here.

November 10, 2008 - Where are you going and where have you been

2008-11-10T11:26:00.000-08:00

For those of you who know the song, extra points for you. Ah, a lot of news from this last weeks cardiologist visit. Dylan has been on a new medicine (a beta blocker, Coreg) that has been shown in some cases of children with cardiomyopathy to greatly improve their condition. Well it hasn't been officially two months since he started it (the time that it usually takes to show improvement) but his heart has shown no improvement. In fact it has actually gotten worse. His heart is actually bigger. And his ejection fracture is at 11% now. Normal is 50 - 70%. So neither his doctor nor I liked these results. To be on the safe side, the doctor wants Dylan officially relisted for transplant. So now, we are suddenly doing a lot of research. Research in to where to go. Apparently there are only a handful of places that are approved to do this kind of surgery on a baby. And unfortunately for us, none of these places are very close. So we are still being faced with having to move somewhere once Dylan gets near the top of the list. We will be doing our due diligence on research this week and updating on the blog sometime next week. In the meantime, I will be trying to start preparing for what will be a short term move. I am mostly worried about how I will handle Dylan's situation with Alex and Maddie in tow. How I can keep a sense of normalcy for them while all this is going on. Keep us in your thoughts and prayers for now.

In the meantime, a pic of Maddie sporting Mom's glasses. I think she looks rather cute. I am still working on getting the videos condensed. So hopefully they will be up next week.

And a big late happy birthday to our nephew Landon and Brandon's Dad Larry. They both share the same birthday of last Saturday! I hope you both had a great time.

Until next week . . .

November 02, 2008 - The Fair and Halloween

2008-11-02T11:27:00.000-08:00

Hi there,
It was certainly a busy and fun week for us last week. Let me start from the Wednesday. Brandon was able to take the day off and we were able to go enjoy the fair with Maddie and Alex while my mom tended Dylan. You can see all the pictures for this month here (http://picasaweb.google.com/mc12041/October2008#). We saw lots of farm animals, which the kids just loved.

This year Alex and Maddie were tall enough to go on some rides. They had a blast. The only problem was when Alex could go on a ride that Maddie was not big enough for. She would just scream at me, pointing at Alex the whole time. But when Alex and Daddy got back, she was happy again. These kids are barely scared of anything. The Ferris wheel freaked me out. I hate heights! When it was in motion I was fine, but when we stopped and were just hanging there, slowly moving back and forth, ugh. Brandon was laughing at me the whole time. We have video of all of it which I will be working on to have up by next week.

This year I was also able to eat the food without being completely nauseous. Since I have been pregnant 3 out of the last 4 years, I haven't been able to enjoy greasy food at all. But now I could. We had corn dogs, cotton candy and funnel cakes. However, I found that I didn't want all that much, because somehow my stomach has shrunk being that my insides were full of babies 3 out of the last 4 years :) I guess that is a good thing too.

Alex got to meet his favorite character on earth right now, Thomas the Train. You can see from the pictures that he was a little nervous and star struck. Even though it was just an inanimate train. Oh to have the imagination of a 3 year old again. The places you could go.

And we ended the night by walking through the section where they are selling things. I somehow forgot this existed at the fair. It reminded me of a swap mart. I did pick up a Gold Canyon Candle for myself. If you get the chance to get one of these, please do, they are better than the Yankee Candles. And Alex and Maddie made their first purchase ever! They bought 2 beanie babies a piece with $5 that their Great Grandmother gave them. They were so excited. They got a bald eagle, an iguana, a dolphin and a raccoon. Pretty cool. While we were there the sales guy shared a story that I think is important to share here with other families. He said that the prior year, the was another child crying just like Maddie was throwing a fit that particular night. Now everyone kind of looks away at a crying child just thinking they are throwing a tantrum. But this kid knew enough to say "This isn't my daddy". The sales guy's friend tackled the predator and the kid was reunited with his family. A happy ending, whew! But the morale of the story was to teach your kid if they are ever in a situation like that, what to say. I know that I will be teaching my kids.

So on Thursday Dylan had his first speech therapy session. He was actually cleared to drink from a sippy cup. Sometimes kids with feeding issues skip the bottle and go straight to sippy cups. We all decided that he might have a degree of acid reflux. So we are going to start him on the medication and they want to see him again in 1 month once we get it under control. I hope this is the cause for some sporadic bouts of whining he seems to go through. I hate to see him uncomfortable considering his situation. But besides this they seemed to think that he is progressing well and that they want to continue seeing him. I am very hopeful for what the therapy can provide.

On Friday was Halloween of course. Alex has been looking forward to this for about a month. I am always amazed at his memory. He can remember things that happened before he was 2 years old. I can't remember anything before I was 5. Anyhow from the pictures you can see that Alex was a knight, Maddie was a Princess and Dylan was a Dragon. Alex and Maddie went trick or treating with dad, while I handed out candy here. We bought 240 pieces of candy and they all went in about 2 and a half hours time. Amazing. The kids brought about the same amount home though. So I will have to think of creative ways to get rid of it, so it won't make the kids hyper and me fat :)

All in all a good week. I hope that you all had a great time too. You better send out the Halloween pics if you have kiddoes. We have another busy week coming up as well. Starting with the cardiologist appt tomorrow. Pray for good news!

Until next week . . .

P.S. Thank you, thank you, thank you for the postcards so far. The kids are loving the mail, it just makes their whole day. Please keep sending them. Even if you aren't traveling and you live far away. We need all the little lifts in our day that we can get.

October 26, 2008 - Getting ready for a busy week

2008-10-26T11:27:00.000-07:00

Sorry, I had to take a week off and be a little lazy. Besides it was nice to just settle into the routine and enjoy some time with the kids and honing my skills around the house. The problem is that I started to have some introspective moments. I let my mind wander at how things may be in a few months. And this always scares me. The idea that I will be in a different city without Brandon. How I would miss him. That I will be in charge of all three kids for an undetermined amount of time. That all three of us will have to live in one room. How can I keep the Maddie and Alex entertained while poor Dylan sits in a hospital room. The list goes on and on. Those are the things that I know for most certain are coming my way. And then I try to remind myself that all of this is an adventure. An adventure with a happy ending. And that it will all be worth it. It is the only way that I can maintain sanity. I can't think of these things on a day to day basis or I would be sad all the time. I can just try to plan the best I can for what is coming my way, without letting my mind wonder what the possibilities are.

We had a follow up gastroentronologist visit for Dylan. They seemed to think we are on the right track even though he is not taking in as much food on his own. I was chatting with the nurse about how we were dealing with things now. She told me that you would not believe the amount of kids that come in without feeding therapy for 3 years. They have all kinds of problems, like gagging on regular food or drink. It takes years to straighten them out. Usually not because services aren't available, but because it is an inconvenience to the parents. Now I am trying not to judge and sure God knows that this is an inconvenience, but you try to fight on knowing that you are saving your kid a lot of pain down the road. I had always read the first two years are critical in development for babies in speech and eating. That is why if you learn nothing but English during this period you can never truly make sounds from another language such as the rolling R in Spanish. Because once your palette is set, it is extremely hard to retrain it. Regardless, they were incredibly impressed with his weight gain and told me to continue to be vigilent. My persistence will pay off. So now we look forward to his first speech therapy session next Thursday afternoon.

This upcoming Wednesday, my mom was kind enough to offer to watch Dylan for the afternoon. She has been trained on his feeding tube and machine, which is no small endeavor. So she is ready to go while we go to the state fair. We are of course taking Alex and Maddie. Maddie was too young to remember last year, but Alex had a blast. So are very excited and we will take many pictures and some video.

Then on Friday is Halloween. So again, we will be taking many pictures and some video. They have been getting amped up for this for a month now. Alex will be a knight and Maddie will be a princess. I am still trying to find a little dragon costume for Dylan. I can't wait to see them all. It is going to be so much fun.

So a busy week, but I am sure there will be much to report next week. Therefore I am off to get some rest in preparation for all these activities. I guess that is one of the major drawbacks to waiting until you are thirty to have your kids, you don't have the energy that you had in your twenties.

Speaking of which, a belated but very "Happy Birthday" to Brandon's sisters Danielle and Kristine. They turned 21 last Friday. I hope it was all that you thought it would be! Except the hangover of course. We miss you very much and hope you are doing great.

Until next week . . .

October 13, 2008 - Fall is here

2008-10-13T11:36:00.000-07:00

Finally an uneventful week with the kids. Which is great news considering the way things run in this house. Everything seemed to flow smoothly. And we are getting into our routine. We are still seeking speech therapy for Dylan and trying to bump up his feedings, but things are going relatively well.

This last weekend went great. We went to the park on Friday. I brought some fried chicken and we ate a picnic and the kids had a great time afterwards. On Saturday we went to Sam's Club to stock up on some food. Something I would recommend in the economic times we are about to face. Don't think just because the stock market rallied today that things aren't on a downward trend. I am sure Brandon will post some economic thoughts at some point. And on Sunday our Cardinals won a very challenging game. They perservered and succeeded. It was awesome. All the while, the weather here was a cool 75 all weekend. Perfect, it actually felt like autumn. I got to open the windows and air out the house.

So I thought I would take this blog and catch everyone up on some things I have been meaning to write about. First off, if there are some traveller amongst you and I know there are. I am going to make a request. I am starting to show Alex maps and such. So I thought it would be fun if you sent us a postcard from where you are visiting. Just email me if you don't already have our address. It will be a neat learning experience for all of the kids to get a postcard from other places in the country and around the world. Just address it to Alex or Maddie or Dylan McQueen. Thanks in advance.

Also I found a really cool animation that explains how Dylan's condition works. You can find it at (http://www.medmovie.com/mmdatabase/MediaPlayer.aspx?ClientID=65&TopicID=558). Next week he has another follow up so there will be more news on that front soon.

And finally some new pictures! They are located (http://picasaweb.google.com/mc12041/October2008)

Until next week . . .

October 06, 2008 - Speech Therapy, Apparently a Tall Order & Halloween preparations

2008-10-06T11:37:00.000-07:00

Well as you know from my prior blogging we are on the hunt for a Speech Therapist. I had no idea how hard this would be to come by. So if anyone needs a job, apparently this is the field to go into. Most therapists have a 4 to 6 month waiting list. The charge to patient is $120 a visit, which is usually hourly. I am sure the therapist gets to pocket at least half of that, let me know if I am wrong. Just thought I would throw the idea out there in case anyone is question what to get their degree in.
So anyhow, Phoenix Children's Hospital gave me a list of about 200 therapists to call. They had one slot left open at the hospital right after my mom's group. This would be terribly inconvenient. But it is looking to be my only option. I have called 20 on the list with none of the accepting our insurance. So I went directly to the insurance web site to see what therapist are approved. There was one. I called and they do not do feeding therapy. Joy (insert sarcasm). So now I am waiting to see if the therapist at Phoenix Children's accepts our insurance. Otherwise I suppose we will just have to wait until we can get out of network coverage next year. Either that or maybe there is an organization that helps with these kinds of things.

Other than that things are going well. I got to talk to another mom of a heart patient today. This is always helpful to me. We certainly are a small sorority and we have to endure daily tasks that make me exhausted just thinking about.

Alex and Maddie are going great. This weekend we all went out to Target and got Halloween costumes. We found a really cool knight outfit for Alex, so of course Maddie has to be a princess. We haven't decided what Dylan will be yet. We spent a lot of time looking at decorations. Maddie is mortified of all of the animatronic Halloween ghouls on display at the stores. She screams and cries a little when she sees them. Brandon thinks this is hilarious, so he just takes her to see more and more. There was one where a ghost went back and forth on this wire. He put the basket where Maddie was right in front of it so it would come at Maddie. Sure enough it did, and she got mad. She yelled at it in that baby way and started trying to punch it. It was pretty funny. Alex loves all of it. He is making the muah-ha-ha noise whenever he sees the stuff now. Dylan is just taking it all in as if it is normal.

We also got to go to the park on Friday. We have discovered it is futile to try to go to restaurants with 3 little ones. Most people are understanding, but there are a few people that are jerks. And our kids aren't even loud or messy. Which is a miracle considering they are 3 three and under. So we are now getting take out and heading off to the park. Which is far less stressfull. The weather is finally starting to get nice here in the evenings too. They had such fun. We all ate and then off they went to play on the slides, rock climbing wall and swings. When we got home they were full and tuckered out. This meant a nice quite evening for Brandon and I to watch a movie. It doesn't get anymore perfect than that.

I hope that all is well with all of you in these financially turbulent times. Remember that we need to bond together as family, friends and community to make it through. Don't hesitate to call or write for moral support and I will always do the same.

Until next week . . .

P.S. A big Happy Birthday! to my brother Chris this week. I can't wait to talk to you. I think I have your phone number wrong though :)

And I am posting Kristi's pic she sent me in email, I thought it was hilarious and summed things up quite nicely.

September 28, 2008 - A Chance Meeting . . . A course set into motion

2008-09-28T11:37:00.000-07:00

This past week was quite interesting. A couple of chance meetings have set some exciting things into motion. Of course I don't believe much in chance or circumstance. I believe that situations or people are brought into your life at the right moment for the right purpose.

First, last weekend, I got an email from our former daycare provider. I couldn't make it to a house warming that she was holding, but I thought I would write her a quick update as to our situation. She wrote back almost immediately. She was compelled to help and wanted to visit Dylan. So I invited her over. She was amazed to see how Alex had grown over the last year and a half. And she was amazed by Dylan and his strength despite his situation. She then asked me if she hold a fundraiser for his cause. Being entrenched in this situation on a day to day basis, I forget how miraculous it is. I have been humbled. Being a mom to all three children, a wife to my husband as well as a nurse to my son has become part of my everyday itinerary. It doesn't seem out of the norm anymore. Don't get me wrong, every day is very very hard. I run around constantly attending to everyone else. I don't question why anymore. At the end of every day I am exhausted and wonder how I made it through. And even more daunting, how will I make it through tomorrow. I try to be grateful for the little things. Because it is so easy to let the hard times and bad situations define your day. But I refuse to have a life like that. I want optimism and a promise of something better. I want to strive to be a better person, parent, wife every day that I am here. So to hear that Bejel, our former daycare provider shared this vision. It made me realize that everyone around me probably shares this vision as well. I know that you need me to succeed as well as my family. So I resign to take help. I will no longer let myself think it a sign of weakness.

Bejel runs a franchise of Forever Living business and is running her fundraiser for Dylan on that end. I am by no means soliciting money. But if you feel compelled to give and want to buy any of these products you may do so at this website (http://www.dylansfund.myflpbiz.com/). Also we are looking into setting up a bank account in his name. So if anyone knows a family attorney who is willing to set up an special id so that we can set up this bank account, please pass along the name. These copays certainly do rack up quickly. And who knows what is coming our way when the transplant occurs.

But most importantly keep us in your thoughts and prayers. All the positive energy we can get would be of most use to us now.

Another chance meeting at my mom's group meeting last week. One of the mom's was telling another about our story. It turns out that her daughter had a form of cardiomyopathy as well. Her daughter is now completely better and she is now 6 years old. Even though I don't know what our outcome or path will be, this does give me great hope and promise. To know that some children do get better is nothing short of amazing. One of the points we talked about was beta blockers. I have been reading for quite some time that Ace Inhibitors (which he is already on, it is called Enalipril) can do some amazing things for cardiomyopathy patients when used in conjunction with Beta Blockers. Luckily we had an appointment with Pediatric Cardiologist last Friday. I had brought this up at our last appointment, and I decided after my research and chance meeting that it was important enough to be brought up again. So after a short discussion with the doctor he agreed to prescribe it to Dylan. His ejection fracture is holding steady in the teens. The doctor just doesn't want things to get worse and is hoping to hold him steady until one year of age for the transplant. I know we have to try everything at our disposal before surgery is an option. I am highly curious to see how this works out and will keep the updates posted here.

Until next week . . .

September 22, 2008 - How to get a baby to eat

2008-09-22T11:38:00.000-07:00

How to get a baby to eat. That was the question presented for Dylan and I at his "Swallow Clinic" last week. We met with a team of specialists to help us understand why Dylan only wants 2 ounces a feeding. It was a 3 hour appointment.

First we met with a speech therapist and a developmental therapist. They examined his palate. Then they let him roll and play on the ground to measure his milestones. After that they watched me feed him with a bottle and then with a baby spoon. They thought that his palate might be a little high, but nothing to worry about. His milestones were right on track. And his eating seemed to be going well, although they agreed that once he was distracted by any kind of noise, he would quit eating. Seems he might be ultra sensitive to certain things. They gave me some good hints to feed him. I guess that babies have no sense of where they are in space. Someone should teach them some physics :) Anyhow, I have to swaddle him and give him something to press his feet up against. It gives him awareness of where he is, so he doesn't feel like he is hurdling through space. And it also helps if you place a finger under the bony part of their chin and apply slight pressure. This helped get another ounce down him. All of that is dependent on that fact that he has an appetite. Because if he doesn't, just forget him eating anything. But if he does, then I am twisted up feeding him like someone trying to get a signal on an old TV with rabbit ears.

Then I met with a Gastroentronologist, a nutritionist and another therapist. They were looking at how I used his feeding pump, his weight gain and asked me a slew of genetic questions. They thought that he was doing fairly well and seemed to agree the cause of his lack of appetite was not genetic. They all thought his weight was low for his height. So they decided to pump up his feedings to 5.5 ounces a feed with 3.5 tablespoons of formula to fortify the milk with calories.

Finally we met with a Lung doctor, I believe it was a Pulmonogist? He just wanted to check for problems in that area. Thankfully there were none.

So I am supposed to follow up in about a month. In the meantime he may need to see a specialist once a week to make sure there is nothing more than can be done in the eating area. I am highly curious to see what this yields. I am even a little hopeful! And definitely thankful to the staff there. They seemed really genuine about his condition.

As for the rest of the fam, we are still here. We went out to celebrate Brandon's birthday on Friday. He took the day off work. I let him sleep in and let him take it easy. After the kids nap, we trekked it out to Chandler to go to Arizona Mills and Rainforest Cafe (always a kids favorite). I've got to give it to Brandon, using up his birthday dinner for the kids, that was awesome. We were having a great time at dinner. But 20 minutes before we were going to leave, Maddie had the meltdown of all meltdowns. She must have thrown a fit for a half an hour. We figured out later she had molars coming in. So we decided that we would have to put off the other things we wanted to do that night to go home. Someday I will get to visit Ikea :(

The rest of the weekend we just enjoyed each others company. This upcoming week should be interesting. Dylan is seeing the Cardiologist on Friday. And who knows what other mishaps could be coming our way :) Any way you look at it, it is always an adventure.

Until next week...

September 14, 2008 - Heart Transplant 101

2008-09-14T11:39:00.000-07:00

Sorry for the delay on the blog. I have been a little bit lazy. I am going to try to commit to write once a week. My hubby tells me that I have been a little depressing on the blog because I just give Dylan updates. So I will try to add some upbeat items as well.

Having said that, the update on Dylan first. About a week and a half ago I got to talk with one of the main transplant nurses for Arizona. We had originally met when Dylan was at Phoenix Children's Hospital and they thought that he would need a transplant 3 days after delivery. Luckily we were able to avoid that. But being realists, we figured it was time to arm ourselves with information regarding the process when that time comes. Of course we had a ton of questions. Our pediatric cardiologist eluded to the fact that he would probably be up for transplant after one year of age. So we wanted to know, what does that entail? Where should we go? How are we notified of a donor? What will Dylan be put through with this procedure? How long is the recovery time?

So here it is for those of you who are curious, Heart Transplant 101. When Dylan is put on the the list he will be placed in line according to severity of his situation. If there are babies that are worse off with his blood type, they will be ahead of him. When it is our turn, Dylan cannot be sick. If he is, then that heart goes to the next patient in line. When he is placed on the list we will be given a pager and are expected to have our bags packed and ready to go at any given time. Kind of like when you go into labor and have to rush to the hospital. If we decide to go to Tucson and have the operation, we will immediately drive down to Tucson when our pager goes off. There is no transplant center in Phoenix yet for children. If we decide to go to California, we have to move their prior to the operation. We get the opportunity to interview any viable transplant centers in order to make our decision. Say we go to Tucson, the most viable option at this point, then we report to the hospital. The surgery takes anywhere from a couple of hours to 4 or 5 hours. Recovery in the hospital is 2 weeks under good circumstances. He will have a long list of medications to take to prevent rejection of the heart for the first year. We then have to remain in Tucson for 3 to 6 months for monitoring. Insurance will help pay for housing. Apparently we have to be close to the hospital for further monitoring. If all goes well from there we will be allowed to return home. He will have to visit his pediatric cardiologist frequently at first and then less and less as time goes on and if things go well. He will be on two medications for the rest of his life to prevent rejection of his heart. I am not sure what those medications are. But I know they suppress his immune system. So there it is, the basics of the heart transplant. We had a few other insurance related questions that aren't too relavant here.

So on other Dylan news, he is going in for a feeding clinic this Wednesday. He hasn't eaten really well since birth. He eats 2 ounces a feeding and the rest we have to place through a feeding machine that goes into his NG tube. Although I hope that this helps him to eat a little better, I am being realistic about this as well. From what I have read of other babies with his condition, their eating patterns are far worse. Throwing up at every feeding. Crying through the entire process. Really just horrible. Dylan only gets sick once a week now. We put him on a powdered probiotic that you can get at any vitamin store. It has been quite helpful. Also children with cardiomyopathy don't have much of an appetite. I thought it was the medications at first. But I guess that since their heart doesn't work as efficiently as the rest of ours they don't burn calories as well. This translates into a poor appetite. So we are hopeful that this clinic will help just a little more.

Now, on to the other kids. Alex and Maddie are doing great. They are adapting to our homebound situation. Luckily my mom comes over to let me run errands a couple of times a week. I often take the kids out with me. They have fun getting out. I also joined a mom's group here. Last week was my first time. I didn't know what to expect, but I ended up having a good time. And they offer daycare for your kids. They had a great time just playing with other children.

The kids are also adjusting well to Dylan and his situation. They just love to give him kisses and hugs. He is responding so well to their attention. Although he doesn't always appreciate it when Maddie tries to lay on him for big hugs.

Brandon and I are hanging in there. Brandon has taken over the last feeding to help me sleep. This often lasts until midnight. I am so thankful for all the help he provides. I am trying to put into place a routine that works for us. For those of you who have heard of FlyLady (just Google it), I have started using that for my cleaning routine, which is a huge help. I am done with most of my chores by 8:30 in the morning with a 30 minute cleanup in the afternoon. I can spend the rest of my time with the kids, which is what they really need right now, my attention and direction.

Lastly on a lighter note, society always puzzles me. Especially reality TV. There are a few good shows out there. I am definitely the type of person with the philosophy of "if it doesn't educate, I don't watch it". With the exception of sports and movies with Brandon. But he brought to my attention a new show "Hole in the Wall" (...again Google). OMG, how stupid. I can't imagine wasting even a minute of my life watching these people trying to make ridiculous shapes fitting through a moving wall ... with a hole in it .... hence the name. If you watch this, please don't admit it to me :) I will be saddened by the mass IQ points lost within our society. And the people willing to go on TV and do this. I can't imagine being on that show and admitting it to anyone. Much less that being my 15 minutes of fame. Ok, rant over :)

I hope everyone else is doing great! I am hoping to have more info and hopefully fun or insightful things to say next week. I will be editing home movies this week as well. So time for more pics and movies from us, yeah!!

Remember Friday is Brandon's birthday!

Until next week...

August 20, 2008 - Transplant is most likely imminent

2008-08-20T11:40:00.000-07:00

Well back from another Cardiologist visit on Monday and there is good news and bad news. The bad news is obviously highlighted in the title. When I was asking the doctor a slew of questions on his condition I was able to get some determinations made about Dylan's condition. Basically we are trying to keep him somewhat healthy until after the year mark. His heart infracture is at 14% and a normal heart is 55%. So even with the medications he is not keeping up. Even though from outward appearances he appears to be a normal baby with just a weak appetite. Obviously he cannot go through life like that. He would eventually go into cardiac arrest from some seemingly simple activity. I had asked when the Children's Hospital here would be doing transplants. I guess that isn't for at least another 4 years. The Cardiologist seriously doubted that he would make it until then. So if we can make it to a year and he makes it through the transplant without rejections, he probably wouldn't need any more operations. That is the good news.

We are still praying for a miracle, but only time will tell. And then there is still the issue of logistics. Since there is no pediatric heart transplant unit in Phoenix, I would have to move somewhere temporarily with the other kids throughout this entire procedure. I am not sure how long that would be for and what that would entail. I am going to try to call the transplant nurse with some questions sometime this week.

On the eating front, I still have to schedule speech therapy for Dylan. When a baby doesn't eat properly you need a speech therapist. All the things I am learning :) So I will hopefully have reports on that for the next blog.

Other than that, everyone is doing great here. We are managing a rough routine at home. It is crazy, but contained. Dylan is smiling, laughing and rolling over both ways. Again, you would never suspect anything was wrong if not for the feeding tube. Alex is going stir crazy. And Maddie is following him around like a puppy.

On another note, congrats to my cousin Charles who was married this week. I wish the best to you and your new wife. I hope you are having a great time on your honeymoon.

And for my friends that have offered help. I will be calling to catch up really soon. We may certainly need it. This will be quite the adventure. I just hope we all make it out alive.

Until next time...

p.s. keep us in your thoughts and prayers.