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, February 3, 2012

Very special times.

Since Case was born we've spent countless hours in rocking chairs. First it was the rocking chairs in the NICU then the ones in the step down unit  (if you can even call them "rocking" chairs. They were more like "slightly moving, cushioned chairs".:) and now it's the two rockers in my home. I love rocking this boy. He's so soft and cuddly. I love his smell and his sweet voice when he babbles but one of my favorite things about rocking him is listening to the songs that play on my phone. Since those early days at the NICU I played songs while I held him. Lately, I've been playing a "radio" on my phone. I quietly pray, listen and cuddle. I treasure these times and have them often.
Since we got home from our last trip to Children's Case had some of the hardest days feeding wise. The volume was just too high. The retching got violent and frequent and was often followed by some vomit which meant lots of cuddles and rocking sessions. After three days of these hard feeds I called his dietician. She helped me break the feeds up into smaller portions and I started the night feeds again. This brought the retching and vomiting down some but feeds continue to be a struggle.
All of that aside, I will always hold our special times close to my heart and will continue to learn, rock and listen to what this boy and his maker have to say to me.:)

This song "What Love Really Means" is one of my favorites and it plays offten during our very special times. I particularly like:

"I will love you for you

Not for what you have done or what you will become

I will love you for you

I will give you the love, the love that you never knew
"





I am so loved...

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