Who would have thought that getting ready for school would include being able to go to the bathroom on your own and climbing the bus steps? Sam is mostly scooting around in the house. He did walk quite a bit with the walker this morning at the park. I also see him starting to squat again while playing.
The hardest thing to gauge is pain. Last week he complained about taking meds at bedtime so I told him take it now and we will see how you do during the next day without meds. So Friday, Saturday and Sunday he was without pain meds. He seemed ok though kind of crabby. At bedtime Sunday, after spending the day at my sister's, he asked for pain meds at bed time. He slept better than he had the last couple of nights. This morning I didn't give him any. While we were at the park I asked several times if he was tired or had pain and he denied it each time. However at one point he crawled into a tube joining two play structures and sat there the longest time. We played a bit, like hid a seek through the holes and poking each other. He finally came out and I asked if he wanted to walk with his walker or to ride in the stroller. He chose the stroller. That seems to be an indication he is in pain, but he still denies it.
Hopefully over the next week he continues to strengthen and come school things will go fine. Friday we have a few appointments coming up: a DEXA scan, endocrinologist, and orthopedic nurse practitioner. The free T3 lab test came back elevated so I am waiting what this will mean. McCune-Albright Syndrome?
Does he have a 504 plan? I'm hoping all goes well!
ReplyDeleteThanks for the good wishes! He has an IEP under Other Health Impaired. Going into Kindergarten, it is a new school and new staff. I know who his classroom teacher is and the school nurse, but not who the physical disabilities teacher or resource teacher is. Add to all that his abilities are changing day by day.
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