Today was James CTC clinic (Coordinated Treatment Center) where he sees most the providers at once. One of the good things/bad things about it is that we don't always see the same doctors. I think seeing the same one is nice because they know his history. The nice part about seeing different doctors is that we get a different point of view. They are usually pretty good about reading up on his history at CTC clinics because they know these kids have lots of things going on.
Back in December we were discharged from PT because we weren't seeing any progress. So today we actually got assessed by a PT. It sounds like we'll be going to back to PT and this we'll be going 1-2 times per week. Hopefully we'll go twice. I've been noticing how tight James' hamstrings have gotten and I'm quite concerned that he'll pop a tendon or that he's in pain. I can barely stretch him and it's always unpleasant for both of us. So hopefully a more aggressive approach to PT will help with those hamstrings.
We got to skip seeing Speech and OT since we see them weekly.
We saw a new physiatrist (physical medicine/rehab) doctor today. I liked him a lot. He was pretty happy with James and his new AFOs (we got them last Friday). We are going to head down to Healthcare Accessories and get his wheelchair assessed and see if we can adjust it for some growth and hopefully at the same time we find a way to keep his hips in the chair where they need to be. He tends to push his hips out resulting in his whole body slumping down in his chair = not good. We're also going to try and do some botox in James' hamstrings and see if that helps his extreme tightness there.
We chatted with the social worker a bit and saw the Pediatrician. We saw a new one today and liked her lots. She was pretty happy with James and helped facilitate some communication with the audiology department to get things moving on the cochlear implant front.
Dietician.....my least favorite. Wouldn't you know little James lost a few pounds again :( Losing weight isn't really an option for James and of course they discussed a G-Tube again. They are giving us another goal-by his 5th birthday (April 2013) the goal is 30 pounds-and stay there. We'll see how that goes but I feel like we've had this conversation over and over for the past 2 1/2 years. We are constantly worrying about James' weight. I get pretty anxious when it comes to weighing James and most the time I don't really want to know. I had thought we'd been doing pretty good and here we'd lost 2-3 pounds.
Overall I guess not a bad day. We've had worse. Although if you were to ask little Elliot he probably would've told you that he was bored and couldn't wait to get out there. He sure is a trooper going with to appts all the time. For the most part he behaves and plays pretty good. But as you would expect from a 2 year old boy, he gets pretty bored being cooped up in waiting rooms.
Just a reminder that you can order Pizza Corner Pizzas and Butter Braids through July 20 and they should be here August 2nd. We'd like the money right away if possible. Thanks again everyone for your support!
I just read your post and know how you feel about whether or not to get a g-tube for your son. We agonized over the decision when our daughter was 2. We did go ahead with it because we were very concerned about her weight. In the beginning it was very tough as her tummy had trouble adjusting and she threw up a lot but in the end it was the right decision. She just wasn't eating enough solids along w/ drinking enough Pediasure for her to have proper nutrition. Faith is 8 and weighs about 50 pounds - she is eating more and more solids but not enough to sustain her. With us the g-tube was the right decision but we know it is a tough one to make. I'll be praying for you to make the best and wisest decision for your son.
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