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.

Saturday, December 31, 2011

Pediasure, cute-scoot and all things Case.


The doctor changed Case from Enfamil Enfacare to Pediasure. I don't know why this excites me so much but it does. It could be that it makes my job a little easier or that Pediasure is more caloric. Whatever the reason I'm very happy for the switch.:) Case gained a total of 4 ounces this week bringing him up to 11 pounds 7 ounces. I'll take it. I had this crazy idea that the weight would pack on at a rapid rate. That isn't happening. We averaged less then 1 pound this month. I'm not complaining. Just had to get rid of my  expectations. I still struggle with getting him to eat enough calories in a day. I can only run 38 ml's per hour for 8-10 hours at night,  which means he needs to have consumed more then half his total calories by around 10 .It's hard not to be stressed about this every day. Somehow, even when it looks like we won't hit our calories, we usually do. I sometimes have to forfeit a few. I have decided to trust Jesus and to be kept in His perfect peace and to try not to give into life's aggravations.

A peaceful man is not compleetly free from the pinch of life's aggravations, he simply declines to give them power and refuses to be held captive by them. -Dodinsky

Being Case's mom I've learned that what works for most babies doesn't always work for my mini-man. Like those dumb wooden highchairs (no matter how small I make the straps, they don't hold him in. He turns completely around and makes friends.) or shoes! He needs a size 1. I'm not talking a "crib shoe". I'm talking an actual real, supportive sneaker. After several phone calls and one email to shoe stores and shoe makers I think I found one pair that will work well! I'm very excited about this as his Physical Therapist said it is very important. I am blessed.:)

On another topic, I wanted you all to see Case's cute scoot. He used to creep but now that he has the Mic-key button, he scoots on his butt. It's really cute. He still walks around holding onto the furniture but when he wants to get around fast, he scoots like this:





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