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, December 8, 2014

Dear Case, Keep Beating the Odds!



Dear Case, 

Four years ago today, they told us to prepare your burial. They told us the worst. You were still inside. I could feel you. I knew you weren't well, weren't growing, couldn't survive a natural birth..... and I loved you. I loved you with every fiber of my being. I knew you belonged to God and I begged him to let you live. To give daddy and me the chance to raise you, watch you grow. I couldn't think of the future because I couldn't bear a future with out you. I wanted to see your first steps, hear your first words, let you pick out a dog that needed loving. You are a gift that keeps on giving. You may grow different, eat different, hit milestones different and live behind hospital walls sometimes, but you are perfect just the way you are. We thank God everyday that he loaned you to us, every perfect-imperfect part of you. Today, as emotions tug at my heart and visions of that horrifying day four years ago flash through my head, I thank God for his unending grace and the gift of our Very Special Case. 

Always and forever love, 
Mom 




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