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.

Tuesday, November 8, 2011

I have been chosen.

I have been chosen to be Case's mother. What a wonderful job I have! Granted, I get tired and sometimes wonder if I'm the right girl for the job. But oh, what a blessing it is to be Case's mother! He is so sweet and peaceful. Lovely in every way. I couldn't ask for four better children. They are perfect for us. Dan and I decided we wanted children but God is the one that decided Meredith , Samantha, Lainey and of course, Case are the children for us. And for that I thank Him.

I some times find my self thinking about how much easier it would be if Case were born without a growth restriction, or any other anomalies. I am quickly reminded that I was chosen to be the mother of this special boy and I know that I wouldn't have it any other way. When we first started seeing that there were issues with our baby Dan looked at me and said, "Liz, I've been excited about all our babies but I think I'm even more excited about this one because God is teaching us and teaching others trough us and this baby."

Dan and I didn't choose for Case to have problems but we did choose to have a good additude and embrace whatever our tomorrow's bring with joy and peace. Thank you Jesus for the blessing we named Case.

If you have an extra 6 (ish) minutes, I recommend you watch this video. It's a great reminder of an EXCELLENT, simplistic principle that we all can apply to every aspect of our lives.

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