Week in Review

Summer is in full swing and our house is full. My mum and dad are here from Ireland and Ryan is definitely enjoying all the attention. He doesn’t get to see his grandparents as often as he would like and its nice to hear how much Ryan has changed since they have seen him last. When you are with him day by day its hard to see the daily progress and how far he has come in just a few months. We are using the summer to get a lot of appointment's knocked of our ever growing list. This week mum and dad took Ryan to the hospital for his repeat sweat test and chest xray requested by the pulmonologist and the hip xray requested by the physiatrist. We got the results on the sweat test a few days later and it was totally normal this time (13) so this made me feel so much better that cystic fibrosis is very unlikely at this point, although we will wait until the blood tests are back to confirm that.

Over the last 6 weeks or so Ryan's teacher has made note of how sleepy he is in class. He doesn’t seem to be sleeping any less or doing any more activities so this is abit of a mystery. At first I blew it off as hes just a little tried today but its becoming more the norm instead of the exception and the school nurse has been calling. One day this week he fell asleep at 4.30pm and slept right through to 7am the next morning! He was also running a very low temp of 96 which was a little concerning for me. The sleepiness could be one of many things, low iron, low some other vitamin, or not getting deep enough sleep at night. Ryan does tend to have a lot of jerky movement while sleeping but it never wakes him up that I know off (but once I'm asleep an earthquake could happen and I wouldn’t realise, although I'm pretty sure JB would wake). I took Ryan in to see his pediatrician and he suggested a sleep study just to rule out anything going on that we don’t know about. http://en.wikipedia.org/wiki/Polysomnography He also tested his iron which was normal (big improvement since we started the iron supplements) and requested a few more blood tests. He checked his o2 sats which were 94 which I guess although low for a non sick, awake child not low enough to be concerned with. It will be interesting to know though how his sats are when sleeping.
This week was Ryan's last week of school before the August break. My mum took the opportunity to sit in with his class for one day. As July also marked the start of the school year Ryan's class was changed. Hes now in a class with 4 other kids that are much more mobile and vocal than the previous class. I think he should do much better in this class and we are already seeing some evidence of that as everyone has noted how much more vocal he has been recently which could be due to listening to the other kids. I also met with his new school PT to discuss the note the physiatrist made about his chair, walker etc. I was very happy to hear that the previous PT that refused to write any daily notes or even advise on his PT schedule has now left the school and his therapy will be taken over by this new lady. Our first meeting was very promising and she seems to be very clued into Ryan's strengths and weaknesses. She also thought the Benik vest would be great addition for Ryan and agreed that his current chair was too supportive. I'm much more at peace with the school situation than i was last month and I'm hoping that the changes to his class and therapy will bring about some great progress all around next year.


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