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.

Monday, January 7, 2013

...but it brings blessings bigger than my wildest dreams.

Living this life is something I never dreamed of doing but it brings blessings bigger than my wildest dreams....

The days are long. The tasks are endless but the reward is priceless. Yes. I'm talking about the best job in the world. A parent of a Special Needs Child.. Read these lyrics and listen to this song. You will be blessed. 


She's up at six a.m. to dress and feed him
She helps him from the wheelchair to the van
And drives the fifty miles to his appointment
And the next day she will do it all again
I asked her how she does it everyday
How do you keep on going with such grace?

And she said, "When those eyes are looking up at mine
Every trial, every fear in that moment disappears
And you realize that it's all worthwhile
When it's your child."

They haven't slept since 2007
Since the doctor placed that baby in their arms
Daddy's working days and nights and on the weekends
And you wonder how it's weighing on his heart
I asked him how he does it everyday
How do you keep on going with such faith?

And he said, "When those eyes are looking up at mine
Every trial, every fear in that moment disappears
And you realize that it's all worthwhile
When it's your child."





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