A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Saturday, March 27, 2010

Clinic Days

Sometimes I don't know where the time goes...
We had 2 clinic days last week. One was with Grandview Children's Rehab, which is local. We met with the developmental pediatrician, PT, OT and language pathologist. Pretty much I sat in the middle of this group of professionals (oh yeah Nickolas' infant developmental worker came for my support) with Nickolas and they fired questions at me.
Is he doing this? this? this? what about that? that? that?
And they are trying to see what he could do. He got really grouchy and I had to feed him in the middle of the meeting.

Or (worse question ever) what is he doing?
I try to think of what he should be doing and comparing. Well... he can lift his head, grabs for things, babbles. I've been keeping away from the developmental charts. They ask if he can do something and I think oops I've not tested that. Oops I didn't notice. Ooh he's supposed to be doing that?
It was a bit overwhelming.
He did well in language development. OT and PT both said he would be "admitted". Pretty much that means he gets put on a waiting list. OT (occupational therapy) is fine motor skills. He isn't grabbing things and using his hands as much as he maybe should - but getting better every day. But he did spend 2 months on his belly. How can you develop hand stuff when you spend half your life looking at the ground! (So his 'adjusted' age for reaching and gabbing things is better).
And of course we knew he'd need PT.

Bloorview Kids Rehab we saw on Friday. Another pediatrician, urology and orthopedics. Ortho was in for 2 seconds, looked at his hips, his feet and said he was good. No problems with his heal bone. (Whew).
I talked alot with urology. Pretty much we keep up with the cathing schedule. We cath 3x a day now, and can do less if his volumes go down, but 30cc is his cut off - he should be less than that. And its better to cath too much than not enough.
We don't want this bladder to stay full and not empty. Like an elastic. If his bladder is too full for too long then it stretches out and can't empty. And when we start with food in a couple months and have bowel issues, urology helps with those too. So I'm just keeping with 3x a day - it's just depressing hoping to get 10-20 and getting 50!

We see PT and OT on Thrusday when we go in for a mom and baby group. Pretty much Nickolas is staying his happy self. and he's enjoying his swimming lessons!

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