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.

Friday, August 17, 2012

Be be be my BFF ‘Cause IDK what’s coming next.

It's a stupid song, I know but it makes me think of my RMH BFF, Lisa.;) You remember Lisa from my previous posts, right? She's the girl that I met at the Ronald McDonald House shortly after the birth of our sons. We connected quickly and have remained close though our struggles and journeys. Her son, Ramsey is a CDH surviour. If you'd like to read more about his story click here. We've cried together, laughed together, worried together and celebrated our very special boys together. I'm so glad she be be be-came my (RMH) BFF 'Cause WeDK what's coming next (sorry, I couldn't help myself).


Thankfully we don't live that far from each other and are able to get together frm time to time. This past weekend we had a cook out and a blast!



Me and Lisa.

The whole crew minus our husbands.:)

Case and his BFF by force, Ramsey.:)


3 comments:

  1. I am so glad you have her and her family!!! It will be a bond that will last!

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  2. You're the best...so thankful for our friendship!

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  3. ..and by the way, I had to google that song. LOL

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