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, December 14, 2011

It's the most wonderful time of the year.

I'm am more excited about Christmas then I have been for awhile. I'm excited to spend Chistmas at home to have a husband and four beautiful children to spend it with. I'm just excited all around! Last year at this time we didn't know where we would be spending Christmas. Although they had a c-section scheduled for January 10th I had a feeling somehow he would come earlier. My gut was telling me he needed to come out earlier then that. I felt like he wasn't growing for a reason and that the reason wasn't a syndrome. The doctor that scheduled the c-section said he had an unknown syndrome causing his lack in growth and there was no reason to take him out any earlier. I quietly disagreed and asked God to bring him out when HE wanted him out even if that meant breaking all tradition. Even if that meant spending Christmas in the Romald McDonald house with the girls. I didn't care about Christmas dinner so much any more. It really put things into perspective. It turns out God wanted him out on the 21st.:) I'm so gald he came out in time for Christmas and I am looking forward to another wonderful Christmas.:) Spending those 38 days, including Christmas in Pittsburgh changed me and this family forever.:) It was and is the most wonderful time of the year.

Case is awesome! He now weighs 11 pounds! He is such a blessing.

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