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.

Friday, August 31, 2012

A Hard Road.

I read an email from a friend. Not a close friend but a sweet girl none the less. She said there are complications with her pregnancy and she has a doctor in Altoona, Johnstown and Pittsburgh. God, did that bring back memories. She said that I am an inspiration and she follows this blog. Her experience sounds very similar to ours and my eyes filled with tears. She is on a hard road. A road not for the weak. A road that will make her strong. My prayer for her and her husband is that even though they will bend may they never break. Even as I type this I am overwhelmed with emotion for this sweet woman chosen for a special journey. I don't know details but I know that this isn't what they pictured when they saw the positive pregnancy test. And I know that they will need to readjust their focus. But from the bottom of my heart I tell you to never think of this as a curse. To know that you are loved. When people say, "as long as it's healthy..." know that they don't mean it and if they do they never met Case. May God's blessings pour out to this family. May they see strength within them that they never knew they had and may they never forget they can do all things through Christ who strengthens them. Don't forget to cry. You don't always have to be strong and no matter how hard it gets there is strength in the journey.

"Don't fear when you go through the fire
Hang on when it's down to the wire
Stand tall and remember what He said

I won't give you more, more then you can take
and I might let you bend, but I won't let you break..."

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