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, May 26, 2012

Case puts the ABLE in disabled.

After the birth of sweet Case a lady from our insurance company called and told me "Because of all your baby's problems he is probably considered disabled." She was right. According to the state Case is indeed disabled. I remember the first time she told me that. I was standing outside of the NICU wondering why I was wasting my precious cell phone minutes talking to this lady. Disabled? Really? How can a baby even BE disabled. A war veteran or a woman who lost her leg in a biking accident yeah, it makes sense that those people are considered  disabled but my sweet, new, precious baby did not seem disabled to me. Once I got over the fear and faced the reality of raising a "disabled" child I realized what a blessing it is to be his mom. He may be disabled but he had never let that define him. His ABILITIES out weigh his DISABILITIES. He is able. He is able to have peace in the midst of chaos. He is able to overcome obstacles. He is able to love when most would hate. He is able be be different and not ashamed. He is able to be strong while others would be weak. He is able to endure pain and be pleasant. He is able to rise above the sentence of a disability and embrace life. He put the ABLE is disabled and amazes us all. 



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