We had a wonderful Halloween this year. Jason and I finally came to an agreement and Jaxon was a dragon. He was so cute. On Thursday morning I took him to TARC for their Halloween parade and story time. He really liked the story time, it was very animated. It didn't hurt that his caseworker was the one telling the stories. Since he still doesn't eat by mouth the candy and cookies had no appeal but he had fun seeing all the other kids in their costumes.
Now I'll back up a little bit. On Thursday we had an appointment to decide if Jaxon was going to get a helmet to re-shape his head. The nurse took his measurements and said he really needs a helmet, but the bad news is he's really to old and it won't do much good. This was where I got really frustrated. I've been pushing for a helmet since he was 6 months old and no one would listen. When I finally got someone to listen now he's to old. I went through all the usual blame someone else, blame myself, and so on. She went on to tell me the flat spot he currently has will most likely be like that forever. I was really upset. Its not that I wanted him to have to wear the stupid thing I just wanted him to have as much of a chance at normal as he can. Kids can be very cruel at a young age and I don't want him to have to deal with it anymore than necessary. I know kids will find something but being self-conscious about appearance is no fun. I guess I've come to peace with it. I've decided we have been to hell and back and if this is the worst thing we have to deal with I guess we are doing alright. He has many more challenges to come so I will focus on those and forget about the stupid helmet.
We have been doing water physical therapy once and week when we can. He still isn't real sure about being in the water but after awhile he warms up to the idea and splashes around. His physical therapist (PT) is really encouraging us to go. He sees his physical therapist and occupational therapist at home once a month. They give us a list of things to work towards for the month. Then we have occupational therapy once a month at Childrens Mercy for his eating skills. Although Jaxon only sits up right now he is making improvements toward wanting to move. We don't know weather it will be crawling or actually rolling toward things but he seems interested anyway.
We have discovered chocolate and its a beautiful thing. I decided to give him an Andes mint and wouldn't you know it was the 1st step toward putting anything in his mouth. He has now tried cinnamon apple sauce, butterscotch pudding, ranch dressing, among a ton of other things. They are only tastes he still refuses to actually eat anything but we are making slow progress. He has a sub-mucous cleft palate. Basically he's missing the cartilage in the roof of his mouth toward the back which is the soft palate. This allows food and liquids to go up into his nose. We saw his cleft team and they recommended therapy which we had already been doing so we have another appointment on Nov 18th to re-evaluate and come up with another plan of action. Therapy is helping but not enough.
Well I wrote most of this a week ago and saved it and now I'm just getting back to it. The only thing I would like to add is we got approved for synagis shots today. I tell myself I'm happy and relieved but at the same time it really sucks to take him to get shots every month and on the months he gets immunizations its two sets of shots. Its the best thing we can do for his lungs coming into the flu season so here goes.
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