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.

Wednesday, February 22, 2012

My Mary-maker.

I used to joke about being a Martha. You know, in the Bible where Jesus was visiting Mary and Martha. Martha was running around the house, crazy busy and Mary was sitting at Jesus' feet. Martha was irritated that Mary was sitting while Martha was busy getting things done for Jesus. Martha complained to Jesus and he said,  “Martha, Martha, you are worried and upset about many things, but few things are needed—or indeed only one. Mary has chosen what is better, and it will not be taken away from her.” I used to be busy. Too busy.

Case is helping  me become a Mary. I stop all the time and smile while strangers admire him. I've spent hours waiting in waiting rooms and doctors offices. But most of my "Mary time" (the quite time of worship and prayer) is often spent sitting holding or rocking him while there is "much to do". Dishes and dusting can be done in the morning. Case and the girls are much more important. Being the mother of a very special boy has helped me slow down and smell the roses. It has taught me patience and the importance of relationship. After all, "choosing what is better will not be taken from me".:) I am thankful to Case helping to transform me into "a Mary".

Luke 10:38-42.

Case sleeping and getting a feed.:)

1 comment:

  1. This is precious...I can relate for different reasons!! My own body made me slow down...Your story and family touch my heart. I love your spirit about it all...