Lots going on since the last time we posted...which was a while ago since we all got hit pretty hard with flu, croup, ear infections, stomach viruses, you name it. Seriously, everyone was sick and very sick during our Christmas break time. Alex, amazingly, was the least sick of the bunch of us. He had a lousy case of croup, but was less sick with it than Matthew was. That's surprising to us, but good.
Alex was just at Gillette this week to check on how the botox and phenol injections were working for him--this is one month out. Usually this is the peak advantage time for the botox. The good news is that Alex can do a number of things more easily than he had--better fine motor skills with his hands, better stretching with his arms, and as we mentioned on the previous post, a lot less scissoring of his legs when walking...until last week. Last week, his scissoring came back with a vengeance--all the PTs mentioned this and frankly it was obvious. So after checking out his walking, stretching, measuring his flexors, etc., our doctor said this was good news and maybe some bad news. Good news that the botox is working as expected many places. Good news he took to walking so quickly while he had the botox influence. And actually, they think the botox (and phenol) are still operative in his legs, incl his inner thighs and hamstrings...but when he walks in particular, that scissoring is really kicking in, and he thinks that indicates those muscles are contracted and working against the botox a bit. Basically, those muscles are perhaps short because he didn't get the intensive therapy he needed in his first five years. He was quick to say two things: he still thought the botox had a shot (no pun intended) of working for more than three weeks if they could adjust dosages. He said it was definitely worth another try or two. But the earliest they could do botox again was late March...too much is bad for the body overall. So we hang out and continue his PT and wait. He has a spasticity clinic appointment in late July now, to assess how everything has gone overall and what next steps are. He suggested a step beyond botox could be bracing or surgery, neither of which I am thrilled about...but do work to help people with CP learn to walk. I should say, his doctor is living proof that not walking isn't the end of the world--he is in a wheelchair himself, and moves himself (from chair to chair) like he is paralyzed from the waist down. But the advantage is that many basic daily activities get so much easier if you can walk at least some, and it improves health too (bone density, organ health, etc.). So, we keep trying.
The second half of the day was an appointment to get measured for a wheelchair and gait trainer. For the sake of my blood pressure, I won't get into all that, other than to say it got done and we expect a call from our vendor early this week. The entire process takes about 3-4 months...from this appointment. Yes, we've been waiting for 3-4 months for the seating evaluation. Anyway.
School continues to go pretty well. He likes it and loves taking the bus. I ask him what he liked about school and he usually says "Bus! Clank, clank!" and then "Circle! Music time!" Jerry and I are looking ahead to kindergarten next year and frankly I am beginning to get nervous. Six months is a long time, and its hard to know how much Alex will continue to improve (I am thinking more language and basic school readiness here), but there is no question things are slowing down a bit. That is completely to be expected, but it makes it hard for us to gauge how he will do in a more typical kindergarten classroom setting. He also fits in so well in a classroom with special needs kids and typically developing kids...I worry about how other kids will treat him in a classroom of almost all typically developing kids.
If you think "wow--way to jump ahead, Susan"--we have to apply to charter schools by the end of this week. So it is on our minds.
On a happy note, I say "I love you" to him at night, and he replies "Wuv you". And he gives me a kiss.
No comments:
Post a Comment