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, February 24, 2013

In the sick kids world…


When I made Case's facebook page this past October, I dove head first into a cyber world of blessings and heartache. A world where a momma can tell me "I know just how you feel" and mean it. A world where you won't see many complaints on children having common colds or colic. Instead you'll see Facebook status's begging God for just one more day to love on a sick child or pictures of tubes, wires and smiles. This is a beautifully sad and happy world. In this world one day you'll see a gorgeous baby on your computer screen and the next day he's gone. Our children's days are numbered and in the "sick kids" world it's more apparent than ever! Instead of complaining of a broken furnace families are thanking God it's "ONLY a broken furnace"…I've made long term friend's with momma's Ill never meet face to face and if I did, I probably would only know who it was by the special child in her arms. I am daily overwhelmed with the love and generosity of complete strangers and soon these complete strangers are dear friends. I'm so thankful I decided to share Case with the world and am overwhelmed by the tough of him having 7,400+ fans (and growing). :) Even though my news feed in flooded with prayer requests, funeral arrangements and praises I wouldn't have it any other way! The child that I was given as my last has opened my eyes and my heart to the good distill left in a world of heartache and for that, I am for ever grateful!! 













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