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, December 23, 2011

Welcome to Holland!!

Case's nurse was in. Slow and steady is what I would use to describe Case's weight gain. One more ounce.;) I love his nurse. She's good, reliable and has become a great friend.

Any way, we got to talking and she told me a story called "Welcome to Holland". It's about a woman who plans a big, life changing trip to Italy. She buys all the guide books, learns the language and gets on the plane. When the plane lands, the stewardess says "Welcome to Holland!". The woman says, "Holland, you say?!? What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
The stewards explain that she is in Holland and that is where she'll stay. My favorite part in the story is where it says, "So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met." There is nothing wrong with Holland. In fact, when she stops and really accepts that Holland is where she is and where she'll stay, she says, "and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts."The very last part of the story says, "...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

I'm glad I'm in Holland, even though I expected Italy. :) I treasure the lessons, the relationships and the beauty of Holland. Most of my friends, my sister and lots of other people are going to and from Italy. But Holland is where I am and Holland is where I want to be.;)

2 comments:

  1. Holland looks like a wonderful place to be :)

    ReplyDelete
  2. It is. You should know, you're here too.:)

    ReplyDelete