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.

Thursday, March 22, 2012

An adventure.

Who doesn't love an adventure? We do! And it's a good thing cause Case is a tiny ball of adventure! Yesterday evening around 7pm I laid him in bed. He was super cranky so he cried for a few minutes at first. At around 8 I went in to hook up his feed. He was sound asleep with his Mic-Key button at the opposite side of the bed and a hole in his belly. When a Mic-Key falls out, (or gets yanked out) it's important you replace it immediately so the hole doesn't close. The hole had started closing making it difficult to put a new Mic-key in (after two tries I was able to get it in). He was fussy and the feed seemed to have trouble going in. I only ran it for a minute or so before I realized if the hole started closing the inside of the stomach could have too making the Mic-Key in the wrong place, etc. I called Case's surgeon (he gave me his cell #) but he didn't answer. I then called the dr. on call at Children's. We were told to go to the Altoona Hospital ER to have an ex-ray so the placement of the Mic-Key could be checked. Long story not so short, we were at the ER until close to midnight and the Mic-Key is in the right place.:) At one point case's surgeon and I were texting back and forth. He agreed that going to the ER was the right thing to do. He is a wonderful doctor full of care for our sweet Case. He says he doesn't know how I do it. I do, by God's grace. There is nothing else in this world I'd rather do.

As I sit rocking Case this evening, I thought of the adventure he is. Dan's dear aunt (one of many) often says "Think of it as an adventure" when life takes us places we didn't intend on going. Case is our adventure. I do not know where our adventure will take us next but I know that I can do all things through Christ who is my strength and so can mini-man.




He doesn't mind the ER.

2 comments:

  1. I can do all things...that's the verse that gets me through. You are a true inspiration, Liz and so is Case!

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  2. Not very many kids get to go to the emergency room when they are not sick or in pain. He looks like he's living it up!! haha

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