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.
Friday, February 8, 2013
Case is Case and that is that.
As the day approaches for us to get the results of the Whole Exome Sequencing Test (an extensive, expensive, 6 month long genetic test that used the blood of Case, his father and me back in October) I've been thinking more about why God made Case different than He typically makes a baby. When Case was formed in my womb, many parts of his body were formed uniquely, some may even say incorrectly. His organs don't all work, his heart has several abnormal variants, his mouth, feet, brainstem, and even skin are "different" than yours and mine and that's just a few of his differences. This test is supposed to find the syndrome that links all of his "problems" together. I have mixed emotions about this test. It could find markers for cancer, Alzheimer's, or another horrible disease. It could say that all of Case's "problems" are carried from me or his dad. It could even tell us Case's days are numbered. I know that some people pray for complete healing for Case and I appreciate that but that's not my prayer. You see, God has always answered this one prayer I pray for His boy and that's "Your will be done." I believe with every fiber in me that Case was made special for a very special reason. No pastor, doctor or test will convince me otherwise. Sure, I ache when Case aches and I cry sometimes but I know that I was handpicked for a VERY special job. One that I will never take for granted and I thank God for Case's differences. When God knit Case together in my womb He used a different kind of thread and like I said before, different isn't defective, different in beautiful.