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, March 27, 2012

A very special family.


I thought it would be fun to take a few days (or so) and focus on the members of this very special family. When Dan and I met and started dating years ago as 9th and 10th graders in high school we had no idea how blessed our future would be or that 4 little lives would change us for the better. I had no idea how 8 and a half years of marriage could bless me beyond measure and show me the beauty of retaliationship. Dan wrote it best in a resent blog post of his and I quote,

"One of the greatest joys in life is family.

Seems like a pretty cut and dry statement, but seriously, you don’t really understand it until you actually have a family of your own (spouse & lul humans).

I have been blessed beyond measure with my family. I could write a library on my wife (and no that’s not a reference to her being fat, but that would be a good one though). I truly admire her in every way. Her strength, focus, heart, courage, drive…..like I said, I could write a library.
I know it sounds cliché, but my kids are bitchin’. They are the best. I think I learn more from them than they do from me!..." 
To continue reading this awesome blog written by an awesome man click here. As the week goes on I will be dedicating some posts to the members that make up this very special family.:)



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