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, May 10, 2012

A very special perspective.

A few days ago I decided to take Case to Walmart. I needed to exchange something that broke and wanted him to pick out a couple of presents for his two main home nurses (in case you didn't know, it's nurse's week:). When we got to customer service, they gave me a hard time. They told me their computer said they had no record of the flawed product, and it hasn't been bought in at least 6 months (not true, I bought it 2 1/2 months ago). They said I was out of luck because I didn't have a receipt. I was so annoyed and frustrated. I was out $20, and they didn't care. As I headed to the back of the store, I remembered a time during my pregnancy with Case when things looked grim. A time when if Case lived, he would be plagued with serious physical and chromosomal issues (or so man thought). During this time I made a deal with God. I promised Him that if he made Case whole and gave him the grace to live a full life, I would stop letting little things brother me. I would stop sweating the small stuff and no longer "spaz" (inside and out).  God kept his part of the deal, and I was breaking mine. As we (just my boy and me) turned down every aisle I realized how unimportant that $20 and my pride were. In the big picture they mean nothing at all. During our walk down the aisles, a kind man showed a lot of interest in Case. He happens to be a paramedic and wanted to know all about Case, in case he ever ends up taking care of him. It was sweet.:) He told me a calm mommy is a paramedic's best friend (good to know!). As I was talking to the paramedic, another lady came up behind us and recognized Case from his blog! How cool! She even praised me on finding time to write it. And lady (sorry, I forget your name) if you're reading this, thanks for stopping me that day. I was blessed. Anyway, it seemed (as I walked though one of the biggest sources of my frustration...Walmart) that God was reminding me of the deal we made over a year ago. It's all about perspective.:) Oh, and by the way, one of the head managers ended up figuring out a problem the others missed and got me my stupid money back.

 I sent this silly picture to some of Case's favorite nurses. They LOVED it.

Case giving himself a gravity feed.

1 comment:

  1. Reminds me of an old book of mine...don't sweat the small stuff. :)