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.

Sunday, December 4, 2011

Take my will and make it Thine, It shall be no longer mine.

My desire as a mother, wife, a daughter and a women is to be consecrated, Lord to thee. The name Elisabeth actually means "consecrated to God." I've grown to adore my name and it's beautiful meaning.

Case's life and challenges have opened a door to a growth within me that I didn't know existed. I was talking to a lady the other day and she was in awe of my attitude in these challenges. I can not change the way Case is, nor do I want to. I can not make him gain weight (even with the tube in he's lost some). I can not fix his kidney or any of the other anomalies. I am only in control of my attitude. My choice to follow blindly His perfect will. Granted, I have desires. The desire for Case to grow and live a strong, long life. But ultimately my prayer is: "Take my will and make it Thine. It shall no longer be mine".



2 comments:

  1. Beautiful, Liz. You have no idea how inspiring those words are to me right now.

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  2. Thanks, Vanessa. I love hearing when the blog touches people.:)

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