The morning didn't get off to the best start. James usually sleeps through the night, but last night he was up from about 4 to 5 AM, so he and Mike were both tired. And then one of James's hearing aids wasn't working. Ugh! So James was uncharacteristically fussy during the first part of the appointment. (I missed most of that, actually, because I went the pharmacy to get his prescription refill. It was "only" a half-hour process, which by hospital pharmacy standards seemed pretty good. And I got to see one of our favorite doctors while I was waiting -- he happened to be walking through the lobby and stopped to say hi -- which was nice!)
As for the hearing aid, we dropped it off at audiology and they have to send it out for repair, which will take around 10 days. Ugh! They really should have loaner hearing aids if it's going to take that long. At least the small mercy is that we were already making the trip over there today, so we're getting it taken care of as fast as possible.
By the time I arrived they had already started the developmental testing (the Bayley Scales of Infant Development, which largely involves seeing what they do with different toys and objects). The tester was the person who was James's physical therapist while he was in the hospital, so she knows him well, and she's super-nice -- she made the process fun. She also commented on his good persistence. Yay, James!
The eval has three subsections: gross motor skills (big movements like walking, throwing, etc.), fine motor skills (manipulating objects, coloring), and social/cognitive skills (problem solving, language, etc.). They were comparing him to the norms for his adjusted age, and by that standard, he was above average. Go, James! And if I remember correctly, the scores she gave us were that he scored at the 23 month level for fine motor, the 21 month level for social/cognitive, and the 20 month level for gross motor skills -- so, basically, he's pretty much in the ballpark for his actual age (almost 22 months), too. I was really pleased to hear that.
We had noticed that James had been walking with his shoulders pushed back again like he used to do (the "tightrope walker" posture that got him referred to the developmental therapist in the first place). I asked the PT about it, and she said that sometimes those things come back again after a growth spurt but that he'd probably just grow back out of it again. She said that he still has a little bit of extra flexibility in his pelvis and (I think) his shoulders or trunk, and so he might also be compensating for that by tightening up his muscles to balance better. And again, that's something that should get better just as he gets more practice with walking, running, climbing, and all that.
We saw the nutritionist, and she gave us samples of a couple of different high calorie toddler formulas to try (Pediasure and Vital Jr.). They're all vanilla or chocolate or strawberry flavored, so it seems like they'd be more appealing than Nutramigen, his current formula. We'll see! (And of course, the other piece of the puzzle is whether he can tolerate them digestively.) Another option that we can try is Carnation Instant Breakfast mix with whole milk. (Mike had suggested that previously and I was against changing up James's formula without checking with the nutritionist, so Mike definitely gave me an "I told you so" look when she said that!)
And speaking of Nutramigen, they changed the formulation several months ago, so the mixing instructions that we'd been following to make his supposedly 26-calorie formula were actually making...20 calorie formula. Ack! Maybe that explains why his weight gain has been so slow recently.
When they pulled up his growth charts, the docs were a little concerned because it looked like he'd lost weight since his previous appointment -- but Mike figured out that the previous weight was wrong, and then we remembered that at James's ear doctor appointment they had weighed him with clothes (and maybe even shoes) on, so that wasn't accurate. James is still well under the charts for weight, but he's on the charts for head circumference and getting closer and closer for height.
Of course, it's funny that the first thing that several of the folks said when they first saw him was, "He's so big!" And he is, compared to the last time they saw him and especially compared to their memories of him in the NICU!
So, overall, everything is looking pretty good. The docs want to see him back one more time in a few months, I think mainly to check on the growth and nutrition issues. They also said they thought it would be fine to drop his developmental therapy down from once a week to once a month, which is great -- it's so time-consuming to have weekly sessions, and I don't think he needs them as much as he might have earlier.
It was great to leave the appointment feeling blessedly normal!
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