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.

Sunday, April 7, 2013

Grace.



Did I ever tell you the story about grace? When I had my routine sonogram around 22 or so weeks, they told us my due date was wrong, moved it back two weeks (Case was technically only 2 weeks early, not 4) and told us he was a girl. A week later, I got a call from one of my favorite nurses saying there were problems with his scan. Could be nothing but it looked like there was a spot on his kidney, heart defects and growth issues. We had a second level sonogram at 25 weeks an hour away from home. My hopes of it all being nothing and of my baby "girl" being fine were shattered. There were problems. Big problems. Lots of problems. I cried. Dan held my hand. The Dr. said an amniocentesis was very nessacery and could save our baby's life. I looked at Dan. He looked at the Dr. and said okay. The scan was long. Sad. The Dr. Looked at me and said, "You've done everything right. There is nothing you can do to make your baby healthy or normal that you haven't already done. You've done nothing wrong." I went to the bathroom and cried again. I prayed. I heard the word "grace" very clearly in my mind. I assumed that was our "daughter's" middle name. We would name her Parker Grace, whether she lived or died. When I got back to the room, my Dr. said our baby shows a lot of signs of one of the Trisomy's. He said he'd call in 2-3 weeks with results. It was a long 2 1/2 weeks. I hoped that it was only Down syndrome....I looked up the word, Grace...It means blessing/favor. How appropriate. Well, obviously, I was pregnant with a boy. And soon enough, the Amnio revealed that. Things got worse. They (to this day) haven't figured out the underlying cause for all of his issues and with every sonogram in Johnstown and Pittsburgh (I had 20-30 total) there was more bad news. I kept ahold of the word grace and although I gave birth to a Case (brave/bringer of peace) Daniel (God is my judge) the word grace is tucked deep in my heart. Even on the darkest days, I remember that our Case and the journey we are on is a blessing/favor not a curse. We are loved and have been picked for a special, sometimes very hard, grace-filled journey and for that, I am ever thankful. I am growing. I am getting stronger. Case has changed our family and my marriage for the better and I wouldn't change our Case for the world.

 


 

1 comment: