Sunday, May 6, 2012


The past couple of weeks have been really good for Nolan. His overall strength has always been on the low side, and he was still grabbing his crayons in an odd fist-grip as of two weeks ago. Within the past week, though, we've seen a few major gains in his coordination and strength. He was able to hold his crayon correctly the other day and maintain the grip for a few minutes. On Saturday, he pumped his legs and powered his own swing for the very first time.

With Matt, we took these little milestones for granted. With Nolan, however, each and every milestone is greeted with elation - and a sigh of relief. While he scored a ZERO on his motor skills evaluation during the first half of the year, he is gaining strength and catching up to his peers. I think his body simply couldn't gain strength when he was so ill with reflux all the time.

The little guy had his first tee ball game on Saturday. Matthew had to miss the game due to a conflicting piano lesson, so Nolan went with Daddy to the game. I was really happy that Dennis took a few pictures - there is nothing cuter than a little boy in a baseball uniform.

While the surgery stopped the reflux (at least, we think it stopped the reflux), the little guy still has stridor. He is also developing a disgusting, clogged up nose. It makes his stridor sound rather "wet."

Thankfully, his C-Pap does work to keep the resulting apnea in check. He wasn't using it on this particular night because the water had gone "off" rather quickly in the heat, and we got home from Buffalo too late to wash and dry the tubing. It was interesting, because his stridor alternated between sounding like a wet snore (in the video above) and the regular, higher-pitched inspiratory stridor that we normally hear. He'll probably have the stridor for a rather long time - the noise itself isn't dangerous, but the cessation in breathing can cause growth and developmental problems over the long term. I have a feeling the C-Pap machine won't be going anywhere anytime soon.

 I may not write as much over the next week or so - the little guy's transition from preschool special education to general (school-aged) special education is coming up and we have a meeting to prepare for!


Herding Grasshoppers said...

LOVE that pic on the swing... the determination on his face! And he sure is cute, all ready for t-ball :D

Two of mine have stuffed up noses and I can only sympathize with how it compounds his stridor. Hope he's feeling better soon,


Kyla said...

Way to go, Nolan!!

Good luck with the transition to elementary! I hope it is as smooth for you guys as it was for us!