December 18, 2011

"Walk This Way"

For several months, we have been hoping Ayden would be both walking and eating by Christmas. With Christmas Day one week away, it's clear he isn't quite going to make it in either area, but he's really close with the walking (I'll cover eating in a subsequent post).

Because of all the time he spent in the hospital, mostly on his back, Ayden's mobility development was pretty far behind. He's been going to weekly physical therapy appointments since early in the year. It took a while for them to really have an effect, but these visits to Ms. Kristin (his therapist) have helped a great deal. Additionally, once Ayden stopped fighting the process and embraced what Ms. Kristin was trying to help him do, more progress was made. With Ms. Kristin's help, Ayden pretty quickly progressed from crawling to pulling to standing to cruising. After that, the pace slowed back down. Walking has proven to be a challenge to Ayden.

He's faced the same issues that all children do at this stage: strength and balance. After working on those two for a while at therapy and at home, Ms. Kristin brought up a couple of impediments she thought were holding Ayden back. First, his feet are pronated (rolled in). Second, she believes he has calcaneal valgus, which is a fancy way of saying his heel bone is tilted when he stands up, rather than straight up and down. These problems are creating decreased stability and strength in his ankles, neither of which is conducive to walking. She suggested Ayden be fitted for some orthotics that would properly align his foot and ankle and provide the stability and support his body can't give him right now.

We didn't really know what to think about all of this, initially. Speaking for myself, I guess it took me a few days to come to grips with the idea of him potentially having additional physical things working against his development (as if his handicapped cardiovascular system isn't already enough). Eventually, we both realized we were responding emotionally, not rationally. Besides, he always had his toes pointed out when he "walked" and these issues probably explain why. So, we put our own issues aside and ordered the orthotics.

They are probably not what you think. Don't picture what Forrest Gump wore. Instead of leg braces, think of an ankle brace made entirely out of hard plastic. It looks like this, except Ayden's has only one strap. With shoes and pants on, you don't even know he's wearing them. Even without pants, you probably wouldn't notice them right away.

He's been wearing them for several weeks now. As you'll see below, they're helping. His stability and balance is much better when he has them on. He's made a lot of progress at therapy over the last few weeks. If he can figure out how to stand up (he can get halfway there right now), he won't be far away from getting up and taking off running. He'll probably wear the orthotics for 4-6 months, which will hopefully be enough time for the muscles and tendons around his ankle to strengthen so his feet can be in the correct position without assistance.

Regardless, he's continuing to catch up to where "normal" kids his age would be, which is all we can ask for. Ms. Kristin thinks he'll be there before surgery #3 arrives next summer. If so, I'll take it.

December 12, 2011

BLM

Lately, we have neglected the blog. Don't worry. Nothing has happened.  We have just been quite busy. With Baby #2 on the way, we decided to free up the nursery by moving Ayden into what had been the guest bedroom. This necessitated getting rid of the furniture in that room. Then I had to paint it (peach isn't an ideal color for a little boy's room). Then I had to take his crib apart, move the pieces into his new room, and put it back together (assembled, it wouldn't fit through the doorways). Then I needed an extra set of hands to move his dresser/hutch, which also had to be taken apart and put back together. Plus, as is seemingly always the case with these things, when you make changes to one room, it causes changes in other rooms. Thus, we made an adjustment to our bedroom and switched up the study a bit.

While I was dealing with all of that, spread out over several weekends (for those of you with kids, you know how hard it is to get projects done during the week), Allison was locating new decorations for both rooms: the nursery will shift from a storybook theme to a train theme; Ayden's new room is done in dragons.

See what I mean? Quite busy.

Nevertheless, I apologize for the lack of updates. My goal is to get something substantive (probably about Ayden's eating and walking) up over the weekend. In the interim, I offer the following nugget of information as something to tide you over...

We have finally decided on a name for Baby #2. I can't tell you the name just yet, but I can pass along his initials:  BLM. Those also happen to be my initials. And before you ask, no, he will not be a "junior."

November 25, 2011

Holiday Weekend Fun

We got to spend some time with Jude's family this holiday weekend. Diana made a superb lunch, which Bryan and I shared with Ayden. Ayden especially liked Ms. Diana's mashed potatoes! (She gave him some to take home for future meals!) The boys interacted better, and Ayden enjoyed playing with all the "new" toys: they threw the ball to each other, read books together, and built at Jude's MegaBlok table. We were glad to see their family, especially at a time when we are all reminded of how thankful we are for the miracle boys, Jude and Ayden.

November 24, 2011

Happy Turkey Day!

This time last year we were living in the hospital. My family brought us Thanksgiving dinner, but, for the most part, the place felt pretty lonely. Today we are thankful to be HOME with a happy, healthy little boy who is eating! :) And another sweet boy is on the way!
Ayden LOVES chocolate! He devours chocolate pudding (I mean, record time!), and he gnaws on Oreos until they fall apart. He recently had his first experience at Sweet CeCe's -- Hershey's Chocolate Kiss and Apple Pie ala Mode yogurts. YUM!
Special Note: The pumpkin pictures and Twizzler shot are the work of Jordan Elam. Thanks, Jordy! We love you!

November 13, 2011

Big Brother's a Big EATER!

Last week Ayden had a cardiology appointment. We weaned his Lasix to ONE dose a day, so he needed a chest x-ray to confirm that his body wasn't accumulating any excess fluids. Everything checked out okay, so we then met with a nutritionist to discuss a tube weaning plan. Ayden has since been on that plan, and he is doing fabulous! Essentially, we got rid of two daytime tube feeds. As a result, Ayden's goal by mouth is 250 calories. To makeup those calories, Ayden has been eating yogurts, pureed fruits, pureed vegetables, and puddings. His schedule is as follows:

(times are approximate)
7:30 AM wake up
8:15 AM breakfast by mouth
9:00 AM 150 ml formula tube feed (15 min. bolus)
12:30 PM lunch by mouth followed by 130 ml water gravity feed
NAP
After nap 130 ml water gravity feed
6:00 PM dinner by mouth followed by 130 ml water gravity feed
9:30 PM 200 ml formula tube feed (20 min. bolus)
1:30 AM 200 ml formula tube feed (20 min. bolus)

As Ayden increases his calorie intake by mouth, our plan is to slowly get rid of the 9:00 AM formula tube feed. Ayden is also engaging in impromptu feeding activities during the day. In addition, he is taking sips of water or juice from an open cup. As you can see from the numbers above, I do not feel as though Ayden is taking enough liquid by mouth, so my hope is that we can work more diligently to find a way that is comfortable and effective for Ayden to consume more liquid.

We are very proud of Ayden, as we know this is an adjustment and challenge for him. He has thus far proven his willingness to push himself to eat the necessary calories. YEAH, AYDEN! Thank you, Lord, for helping our little man get the job done!
Ayden is a tad bit messy when he eats. He especially loves to smear food in his hair! I don't care how he eats though, as long as he is eating!

Two items of note:

1. Ayden has not vomited for months! This change has been huge for our family. Not only does it mean that we aren't cleaning up throw up 2-3 times a day, but it also means that we don't have to cringe with worry (and sadness) every time it happens. Not vomiting probably is helpful for Ayden's eating as well. So... did he grow out of it? We don't think so. We think there was a medication conflict. When we took away his Nexium (yes, a reflux drug), he stopped vomiting. Supposedly, one is not supposed to mix Nexium and Digoxin, a heart med that Ayden takes twice a day. Though we brought this topic up at least twice to physicians, we were told that the likelihood of the combination being a problem was slim. We, however, think there was an issue.

2. Ayden is down to four medications, three of which are heart meds that he will probably take for as long as they are deemed effective. The fourth medication, Lasix, should be gone by February. WHOO HOO!