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.

Saturday, July 21, 2012

19 Months Old Today.

This kid is an adventure, every day brings joy, grace and blessing ( oh and sometimes tears). This tiny man (14 pounds 10 ounces and 26 inches long) has taught me more about life, love and strength than any pastor, teacher or book ever has. He has pushed me to almost breaking and kissed me when I cried. He brought this family to a new normal and has shown us how special, "special needs" really are. He has taught us to live in today and deal with tomorrow when tomorrow comes. He is our blessing, our lesson and our tiny teacher.;)


And now for an update on the little-big man:
Case can walk and does sometimes (probably about as much as he scoots.;) He really doesn't talk. He can say a few words but rarely does. We have a consult with a Speech Therapist, August 30th. He does communicate well with pointing, shaking his head "no" and an adorable new nod for "yes". He seems to be tolerating his J feeds of Nutren JR. He does still retch some mornings for no apparent reason but that seems mild compared to the issues he had on the G feeds.  He throws almost all of his own diapers away. He blows kisses and waves "hi" and "bye". He fist pumps and gives the best kisses. He is active and feisty, takes fits and apologizes with hugs. For the most part he seems to be developing quite well and is rather smart. He is a tiny toddler.:)










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