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.

Thursday, January 1, 2015

A Beautiful Year. A Beautiful You.

2014 was a beautiful year. The good, the bad, the hard....It started with surgery #7 and ended with surgery #10. 
Case started school in January unable to draw a straight line and ended writing his NAME!



Case's biggest surgery of his life happened in May. His scull was taken out of his head and reconstructed....Not only did he rock it, but he excelled! His Chairi Malformation disappeared! He gained 7 pounds, spoke much more and ate more than ever once his brain starting growing properly!


Beautiful Case. He's worked so hard, grew so much and met some amazing people. 

 

Beautiful news casters..... 







Amazing men that changed our lives. 

This year held so many hospital trips, blood draws,appointments and tests. 




He rocked them all!

2014 was the year of the Taco! We finally made the plunge and adopted a dog from a local shelter in November. We named him Taco. He completed our little family. 




We've been so very blessed in 2014. It was hard. It was beautiful. It was one amazing year. Case was chosen to be a "Wish Kid."  We are in the process of his wish to go to Disney World being granted for April!



Throughout the hard....A surgery failed, a brain reconstructed, a dangerous Hypoglycimicic drop, several hospital stays, etc. etc. there were blessing unimaginable! Our community rallied together, our friends and family never left our sides. They put us back on our feet. They are our heroes. 






From news coverage to a billboard and parade, famous Case became more famous and our community never ceased to amaze us!









Because of our beautiful facebook community, our Johnstown community and all of our amazing friends and families these two little boys were able to collect 700+ Christmas ornaments for Children's Hospital and the Ronald McDonald house. 

Through the good times and bad, 2014 was a beautiful year with a beautiful Case! Thanks for being part of it!









Here's to one kick-butt 2015! Who knows, maybe we'll find Case's main diagnosis!
Either way, one thing is for sure, through the grace of God and the love of others, Beautiful Case is going to have yet another Beautiful year!!!