A Healthy Summer

I always hesitate to write a new blog when things are going well. I guess I worry that it will be a jinx of sorts. However, our last post was in April so we need to write something. So many things have happened in the months since then, but most all of it has been good. Ayden finished his school year almost completely seizure free. I wish I had some good photos from Camp Rhino this year, but trust me Bub loved camping. He was so excited that his regular bus drivers were not greeted with smiles on camp mornings. He pleaded, "Darlene camping!"

 In June, we headed to the Smokey Mountains for our first real family vacation and although we were nervous he handled it very well. Every once in awhile he would ask "Where are we going?" and answer himself(after our answers during the first part of the trip) with, "On Bacashin". He did well at the pool and tolerated a few dinners out at restaurants, but preferred cereal and mac' cheese at the condo. He did well with downtown Gaitlinburg and enjoyed the Tram to Ober Gaitlinburg where we found a pay one price carousel and he was in heaven.

 We stopped at Holiday World on our way back home and he LOVED IT!! I have always heard positive things and I can say they were fabulous with him. We didn't realize he could get a special pass so after the first hour or so (and 5 different employees asking me if I knew I could) we went and signed up. It was nice because it allowed us to use the shorter entrances and then we just waited for Daddy and Sis to join us when they made it throw the lines.We were gone less than a week, but long enough for Bub to enjoy being home and ready for routine.

 Our only routine is Wednesday therapy at Parkview. He LOVES his Julia and works hard for her despite whining and trying to "cheat". :)
We have ordered new braces for his ankles/feet/left wrist so he will be ready for school. I wish our insurance allowed more time with Julia and that it wasn't a 2 hour round-trip drive or we would go to therapy every day all summer long. He makes great gains each summer, but then we seem to lose some when school starts again. I have decided to try to get him to Julia at least once a month throughout the school year this time to see if we can try to stay on top of his progress.

 A big help in the summer is the chance to get OUTSIDE and swim. Bub is such a fish and still loves his swing so much I get tired pushing. :) He is tall enough now we let him swim without his vest in our pool and he has started swimming under water. He is so independent and proud in the pool it is awesome to watch. If I ever get video I will post as it is a must see.
 Ayden has had very minimal seizure activity on his current medications. I love providing seizure freedom, but still have a few concerns. He had his surgeries to eliminate the need for meds and now we are back on them. There are a few things I am keeping a close eye on. I do not like his loss of appetite, and it is not a direct side effect of the medicine, but could be caused by a high ammonia level from the meds. His loss of some coordination is disturbing to me and his PT confirmed it is a very common side effect of this med. We didn't notice when he was on it before because he wasn't walking and was having so many drop seizures it was hard to tell.

 He has definitely been more moody and had more fits, but it is summer and we have not kept a routine so it is hard to tell for sure what has caused that problem.
We were to go back to Wisconsin in July for a follow up, but it is now scheduled in September. On the bright side, we will have lots of data to bring with us and discuss with his neurologist. As he starts school I would like to see if the anger/frustration subsides. It will help decide if it really is a pressure issue as suspected in the spring.

His pediatrician is following our concerns as well and referred him to a nutritionist which may help us insure he is getting what he needs. Yes, Bubba has a "reserve", but we have to feed to brain to help it continue to heal and grow.
Our plan for the rest of the summer is to continue to relax and enjoy it!
Thank you to all of you who keep Bubba in your hearts, thoughts, prayers!  -The Hoffmans

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This spring we sold Ayden's old adaptive trike to another hemi kiddo and Bub was not happy to see it go. We have made it through the summer so far with minimal fuss, but Ayden is very jealous of Sis when she bikes. He also LOVES when he gets to use the bike at therapy. I was online looking at the bigger sizes of the Rifton trike he had before and decided to set up a kiddie pool fund through Adaptive Mall. Ayden is still on the waitlist for  waiver support, but therapy trikes aren't covered by insurance so we have are saving again for his new one. I am posting the link to his kiddie pool site here and on his home page.http://www.adaptivemall.com/ayden.html