Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Tuesday, October 25, 2011

Open up your plans and damn you're free.

So Case loves the Jason Marz song, I'm Yours. It's true. At a very young age it was the only thing that would keep him quiet in the car. As soon as he heard it the first time, he stopped screaming and listened. It was one of the many songs on a playlist I played for him in the hospital while I feed him. I don't know why he picked that song as his favorite but he did. Some days it plays over and over in my head. Like it's trying to tell me something. Like He's trying to tell me something. I don't know all the lines nor do I care to really... the lines that I hear over and over are:

But I won't hesitate no more, 
no more, it cannot wait 
I'm Yours 
(me talking to God)

Well open up your mind and see like Me 
open up your plans and damn you're free 
look into your heart and you'll find love love love love
(God talking to me

When I first found out I was pregnant with Case I had plans. Plans he would be a normal weight, with no complications. I didn't plan on having a c-section. I didn't plan on him being life flighted away from me to a different hospital. I didn't plan on all these appointments. Etc... I didn't think about these plans, really. I just kind of expected that he'd be like our other three children. In most ways he is. Just a small version of his daddy with a little extra care. He takes more time, but oh is he ever worth it! Case isn't exactly how I planed, but he is exactly how God planned and we wouldn't have it any other way. <3

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