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.

Sunday, May 19, 2013

Oh, the places you'll go!


Oh my, boy. My sweet, special boy. You've been though a lot in your 28 months on earth! Even making it to earth was more than you were thought to do! I know that it hurts more than it should to be you. You feel pain daily not like a two year old should but you are happy deep with in your soul and it shows. You've been cut open more times in 28 months than most are in a life time! You are poked, prodded and shot with needles so much that you often don't cry anymore but boy, you're a blessing! You've been in homes all over the nation and when your face grace's Facebook's news feed people smile. People all over the world love you because you're spirit is bright and you restore hope to they're souls. When they look at you, they feel strong because you show them what strength is. Oh, boy you are still going, I know and I can't imagine all the places you'll be in your lifetime. Thank you for bringing me along. For helping me grow.  I love you boy, just the way you are.

http://www.foxnews.com/on-air/americas-news-hq/index.html Click that link to see Case on Fox news.:)

Today you were on National news.








 

1 comment:

  1. Yes Mr. Case you are special! And you have a God chosen 'special' family that loves you as well as a whole world of other families that have come to love you too. You have come a long way baby boy and you will continue to go a long way because God has plans for your little life. You have touched so many lives and given inspiration & hope & courage to so many just by being you and winning us over with your infectious smile that we look forward to seeing daily. May God continue to bless you and your family. You are my super hero Case! Sending hugs n prayers from Mississippi <3

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