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.

Wednesday, February 29, 2012

You tell me, life will not always be pain free..

You tell me, life will not always be pain free....
*but*
You are stronger
Than any terrible possible scenario today
Come and save me
-Song lyrics that ring true to me.
 The life that is led by the mommy of a special needs child is not always pain free. It's the *not letting pain lead to suffering* (because He is stronger then any possible scenario that has ever been thrown at me) that keeps me going. And, oh, have we heard EVERY possible scenario.  He has saved me from the suffering. Saved me from overwhelming worry. Saved me from being taken down by these anomalies. Syndrome or no syndrome, big or small, sick or well, Case is exactly the child God desires him to be. We are not being punished but rather rewarded and made stronger by the blessing that he is and his special journey.


Galatians 6:9 Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. 







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