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.

Saturday, December 21, 2013

I Thank God for BEAUTIFUL you!

Beautiful YOU!

Dear Case,

Happy three years! What a wild ride it's been. Thank you for being YOU! Bright, bold, beautiful YOU. You're different from the rest. You're insides , your outsides, your heart and your soul, I wouldn't change one tiny thing about you. I've loved everything about these crazy 3 years. I've loved the good, I've loved the bad, the chaotic and the sad. I've loved it all because it's all part of who you are and what we've become. We are different. We love more, we yell less....all because of you. You are so beautiful. Case, I'm so thankful you were born just the way you are. I love your spirit, I love your smile, you'd crooked fingers and tiny toes. I can't believe all you've endured in 3 short years, all of the pokes, all of the tests, the surgeries, the nights at the hospital but through it all, you still smile so bright. You are my inspiration and I still remember the first time I saw you. I remember looking into your tiny eyes and just knowing everything would be alright. Everything will always be alright. No matter where we are or what we are doing..... we will always be alright because we will always have each other. Just like your first Christmas when you were in an isolate with needles, wires and tubes and we celebrated at the Ronald McDonald house with a tiny tree and a lot of love.....You see Case, it doesn't matter where we are or how we spend our days as long as we always have you. Bright, beautiful, you. 

With all my love, always and forever....

Mommy
The day I was born.

When I was 1!

When I was 2!

I am 3!

3 comments:

  1. You are an awesome mommy! God bless you. I said goodbye to my unborn son, Liam on January 2nd of this year. I've started a blog of my own so I can tell the world about him even if he's not here physically. Just remember you are amazing and Case is lucky to have you for his mommy. ❤️

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