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, August 9, 2012

I know I'm a special needs mom because _______ & _______.

In one of the special needs support groups on facebook they play this game once in a while. It's like a roller coaster of emotions when I read the responses. Some are funny, some are sad and some make you hug you're kids tighter and count you're blessings... I can easily relate to most of them, and some days I have a "special needs mom moment." Like when I have more received calls from doctor offices and therapists than friends or family. When I tear up a bit after hearing of a child being cured, not because I'm not ecstatic for that child, but because I know Case will probably deal with most of his issues for the rest of his life. Or when in the middle of the night Lainey is coughing in her sleep, and I think for a second that I can shove meds though her Mic-Key... When I realize his nurses are my best friends...Oh, and how traveling round trip 6 hours through downtown Pittsburgh with my son and his nurse for a dermatologist's appointment seemed normal to me! :)
But then I realize something beautiful, through the good, the bad, and the ugly I will gain strength and remain a very special mom. ;)

Jeremiah 29:11

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

1 comment:

  1. Liz-

    It was so great to hang out with you and Case tonight! I love the picture of him looking in the mirror and back at us all in one shot. He's such a special little kid, and I can't wait to see where God takes him, you, and the rest of your family.

    God's got you, girl!