They say time flys when you're having fun, I think time just plain flys. This summer went by in the blink of an eye. Of course it didn't help that school started mid August either! Clay and Jude are at the same school this year and they ride the bus together. This year Jude is in kindergarten all day and seems to love it. Every day his brother Clayton sits at the kitchen table for a mock spelling test. Now that Jude is in school I've had to buy another dry erase board and try to think of sight words for Jude to spell!
Summer was a blast, it was wonderful to be able to be with the boys every day. We, as a family, have decided that my time is better served at home with the boys than working outside the home. That way we insure Jude is able to go to therapies and is reminded about things like use two hands and breakfast and lunch are righty tasks, etc. And now that he is school I realize how beneficial that was. I am not there for 8 hours and I honestly don't know if he uses righty at all during those times. I have to have faith that (because of all the therapies we have done!) he will use it spontaneously and consistently, I wish I could be a fly on the wall.
Maybe I will have to delegate that job to Jude's Great Grandma, unfortunately we lost her this year after 94 wonderful years. Rose Eiting was a wonderful woman, full of happiness and love. It's a sad thing to go through and takes longer than the couple weeks it's been to forget. There is comfort in knowing she is looking out for her sweet Jude, maybe she will have to remind him now.
Jude spent a lot of time out of his AFO (a brace for his drop foot) and little by little those things help build his muscle. I asked the orthopedic doctor about that this year, there seems to be a visible difference in the size of his calves. He said because there is less neurological input it grows at a slower rate. Right now the only solution he saw was a calf implant and that's definitely not a decision I should ever make for Judian. But he also gave us some great news, another round of Botox has been deferred for 6 months. Jude's range and stretch look great so his Doctor doesn't see the need right now. I have no doubt it is because of the DynaSplint. He actually asks me to put his brace on because he knows that when he wears that consistently he doesn't need Botox.
The DynaSplint was a wonderful find from his physical therapist. After researching it she realized it may be beneficial for Jude so we tried it. So far he has avoided an entire year of Botox and is less tight than before! We are so lucky to have such a wonderful team of doctors and especially THERAPISTS. Without them we would be lost and Jude certainly wouldn't be where he is today without them. They are always looking for things that would benefit Jude. I love doing play therapy but am not near as good as those on team Jude and for that I am forever grateful.
This year brings several new challenges and changes. We are still fighting the insurance company to get payment for the Constraint Induced Therapy (CIT), we have been denied on 3 appeals now. They say that now CIT is not considered experimental like they said back in April but the 6 hours of intense therapy is not necessary. It seems that whenever we have something to prove their statements wrong they come up with some new reason. I am now looking into lawyers and external review boards, hopefully one of them will help. We are also still fighting the school system to get Jude the safety precautions that he needs. He cannot supinate his wrist (turn it over) so carrying the lunch tray is very difficult. He has already had to skip his snack at lunch because no one was there to help him open it. Although they say there are people walking around to help open things for the little ones and carry their trays, on day 1 he could not eat what I packed him for lunch because no one was there to help him open it. He is not one that asks for help easily, he really wants to try to do it himself, so many times time runs out on him because he took longer than average to do something. That is exactly my fear, that he will be pushed around and go without because he is a bit slower than his peers. The school says I shouldn't worry about that, there will always be someone to "help him out if he needs it". But they don't know if Jude doesn't ask for help or someone takes an interest in him and so far that isn't the case that I know of. So I will definitely write about it at a later time so hopefully I can help others.
Cheers
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