I once again have totally neglected Kadens blog!! We are just so busy all the time. It has been a wonderful summer filled with all kinds of trips and fun stuff!! We took Kaden to my parents cabin on Lake Gogebic in the U.P. I was soo worried about this, but figured life goes on and if all his issues were stable then we would give it a try!! A 12 hour car ride is daunting in itself but add a baby with "issues" and you just don't know what you'll get. We drove all night long in the hopes Kaden would sleep most of the trip and for the most part it worked!! He was great and we all had a wonderful time!! We came home with lots of good memories and a few mosquito bites too!
Kaden has gotten his new leg braces(AFOs). For the most part he hasn't fought them too much. I am sure he would like to be free of them but he is pretty good about not fussing to much when they are on. All his other appointments pretty much went as expected this summer.
We got new mold for his hearing aids so they fit better. We have seen nephro and cardio and they have taken him off all his cardiac meds!!! Yeah!! The blood pressure problems all had to do with the ACTH he was on. The SVT is something that hopefully he grew out of. The cardiologist said that it is a 80% chance that it will never come back!! So far soo good!
He has had PT,OT and speech therapy(for eating) all summer and starts his new special education class Sept 7. It is just once a week and we stay with him the whole time.
One good thing that happened is that our insurance company found the necessity in paying for Kadens Pediasure till he turns 2. Then they will reevaluate it. That stuff is soooo expensive. If you think formula is expensive, its nothing compared to pediasure when you need 90 cans a month of it!! They have deemed him failure to thrive and with his oral motor problems he doesn't eat baby food well still. I hope this improves though.
Kadens Opthomologist appointment went as I expected it too. They don't think he sees much of anything. We have know this in our hearts for along time so it was not a surprise, but it still doesn't make it hurt any less.
I am ready for fall and to get the kids back in school and get back on a schedule!! They have done more swimming this summer than any other I think!! Our lake front property which we intend to build on in the future is within walking distance to our house. So the kids have been swimming like crazy!! They got a floating dock from my parents for there birthdays and it has been used like crazy!!! Even Kaden likes dipping his toes in!!