Pockets

So last night before it got dark I took Noah to his favorite pathway when I realized how cold it was getting and looked at Noah's little pockets on his jacket ,

I thought how silly that was but it still made me sad for a minute. Something so simple like unused pockets. It dawned on me that Noah's pockets have never been used.

  Never really thought about The fact that Noah's never seen or used a pocket. Seemed so silly to think about. Then I approached the corner and saw this sunset. At that moment pockets did not seem so important. And the cold didn't feel so bitter.

Free cookbook for blended diet

Found a wonderful site offering great nutritional information for blended diets and overall good health.

 Free Book can be downloaded here
http://bestfoodist.com/

Schizencephaly child of the week

If you would like your Schiz kiddo story of the day/ week shared please let me know. I share on FB, the website, Our blog and groups. Just inbox me your story along with pictures you want us to share,

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!!!!:)

Broken femur and blended diet

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

Noah is resting after a long day

This day was filled with such defeat.  Noah finally fell asleep around 4am after excruciating pain from his right leg

We are praying for no surgery but it's not looking hopeful. We do not have a cause to the collapsed femur

Broken Femur

Noah has always been a strong little boy, so of course seeing him with a pained look today made me call his dr right away to question if this was due to his dislocated hip. His Dr insisted it should wait and I should give him Motrin
 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.

Botox session

Watch "VIDEO0715.mp4" on YouTube
This video hopefully will help other families understand What these injections are like and Why we do them. They will help with Noah's right arm and upper scoliosis issues