While we were at a co-treat of PT and OT this week, AJ's PT asked what I've been seeing with AJ. I noted difficulty walking, tripping over his feet, dragging, and trying to walk to fast.
It is a darn good thing we got the botox in his calf.
Why is it good?
AJ's growing. He has been since he got the botox a month ago. He always grows "up" before "out", so I can always tell when I'm rolling the waist of his pants and shorts, as he loses what little hips and tush he has. He usually grows slowly, which aggrivates his GI doctor but pleases both us and his PT, since it causes him less pain. (His muscles do not stretch at the same rate his bones do, thus, PAIN). But this time around, he's growing faster. Faster than his normal pace.
If he hadn't had the botox he would have lost the mobility to walk.
The funny thing? I shrugged it off. Me! I shrugged it off. One because I was patting myself on the back for stopping my freak out over the botox and just went for it. Two, because he had the botox, so we were lucky, and we can work with the challenges his growth spurt is causing. Three, because his PT walks on water with me and I know she would never let that happen permanently. The growing does hinder us to see how well, exactly, the botox has worked, but if its kept him mobile. t
Which brings me to the curve.
AJ's spine is changing. If left untreated, he could have curvature of the spine. His PT said "He WILL NOT have a curve in his spine, I WILL NOT allow it." When she says those things (like HE WILL WALK) I know we'll be given the tools for preventing curvature and go forward. She had to show me the change a few times before I saw it.
This did scared me, more than the walking thing. But, his PT showed me some funky back stretches to do with him, mandated massaging twice a day (which she has never ever done, she never gives me reps or whatever), and mandated Jer wrestling with him and bouncing him around with "enthusiasm". Somehow I don't think the last two instructions will be that difficult to make happen. Anything we can do to keep him loose and stretched out is now on our agenda.
AJ hasn't been drinking his Kid Essentials. He's actually been drinking water. Plain.Straight.Agua. This is nothing short of a miracle. That I had nothing to do with. After finding out that AJ did drink white milk a few times at school last year, I thought it was time to make the change. He's eating enough in his daily diet to feed a horse, or heck, maybe the whole farm. I think the "let's drink something icky and sweet multiple times a day got to him. AND, its horrible for his already weak teeth.
So, I checked with our GI dietician and gave her my plan of attack: whole milk with 2 TSBP Duocal mixed in, with a daily vitamin. Much to my surprise, we got the all clear. In case you wanted to know, whole milk is 150 cal per 8oz, each TBSP of Ducoal is 42 cal. While we didn't reach this goal due to AJ gaining a huge amount of weight (we wish!), nonetheless, we are thrilled we no longer have to hunt for KE and can save a whole lot of money.
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