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, August 21, 2012

You are Perfect to Me.

Dear Case,

  I don't care if you're never tall. It doesn't  matter to me if the world calls you abnormal. You don't need to follow a text book. I don't care if you're always hard work. I will grow weary taking care of you if I need to because you were made exactly the way you are meant to be  and I love that about you. I love that you are happy in your own skin. Don't ever forget about your inner strength, you're undying peace or your faultless Maker. Don't let anyone tell you you are less then perfect. Don't back down. Don't give up. Don't ever stop loving and don't ever start caring about what people think. You are perfect to me.

Love,

Mom



1 comment:

  1. I hope these posts will still be around when Case is old enough to read them! Keep going strong, Liz. As always, I'm praying for your mama's heart!

    Suzy

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