Monday, June 17, 2013
Tuesday, June 11, 2013
Our Kiddo of the week is Andrew Baatz. His momma says "
Andrew Douglas Adams, born March 18 2012, he was diagnosed July 26 2012 and was diagnosed with Bilateral Closed Lip Parietal Schizencephaly. He has Strabismus Amblyopia/duanes syndrome, also was recently diagnosed with Central Sleep Apnea and Insomnia. He has reduced sensitivity, hypotonia of his right side, and weakness of his right side. He just learned how to sit up just after his birthday!!!!:)
Sunday, June 9, 2013
Noah suffered a femur break last week and we were discouraged to find the Dr had no solution to helping his brittle bone. After asking repeatedly for test and vitamin d supplements we were denied. So we decided on a holistic Dr and a blended food diet for boron and more supplements
Wednesday, June 5, 2013
Around 9:30 pm I looked at his knee and noticed it was bulging out. I immediately called 911.
5 hours later we have found due to his brittle bones his femur has literally caved inward and in most cases like these they would require rodding but due to Noah's small bones and brittle bones we are unsure what is going to happen at this point.
He is in a lot of pain and is resting at home now with Morphine awaiting his dr appointment in the morning.
I have shed many tears throughout this year. This year has been filled with many ups and downs. His personality has become a driving force in the house and his communication has begun to amaze me. But these hardships have become such a hard thing to sleep through at night.
I worry about his life. I know He is as healthy as can be but since last June 2012 we have had 6 surgeries and 11 hospital trips for serious issues.
He is a hero to me. I cannot believe the amount of love he holds and the strength he has to smile at me when he is hurting. It's as though he is comforting me.
I think the next few years are going to spent with a lot of hugs and good memories. There has to be some light coming through soon.
At least I still have hope the sun is just about to burst through these bad days, Until then we just breathe.