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 1, 2012

A very special super-star.

"I wouldn't change him, even in my hardest moments. I'm so thankful for him just because of all the love he has brought," Liz said. "He's considered disabled, but I think he's perfect. I wouldn't change him because he's just so cool."

Yep. That's me. I said that and it's true, "he's just so cool!". Our family is in an article in a local magazine called, Mirror Moms. I was contacted a few weeks ago and did an over the phone interview with a lady named Kristy. The article is called, "Ronald McDonald House helps families with sick children". You can read the article hereI speak briefly of Case and our time at the RMH. I was also contacted by a lady named Dawn, from a local t.v. show called "Central PA live." She asked if I would like to be on the show, I said I would love to. Her and her camera man came to our house this past Monday. I did an interview while he recorded and then he video taped our very special super-star in action. Case sped around the house getting into drawers and playing with toys. I will be on the show Monday the 6th. It's on WTAJTV10 at 4 pm. They will also air the footage they got here. The whole experience is a good one. We've all enjoyed being a part of sharing this very special story. One question Dawn asked caught me a little off guard. She asked me why I decided to share Case's story with her and Kristy and all of you. I paused thinking, "Hmmmm, that's a good question…" My answer went something like this: "I've seen the hurt on mom's faces when they realize their child is going to be born different. I want them to know that just because a child is a little different doesn't mean they are a problem. Case is not a problem he is a blessing." I mean that when I say it. I wouldn't change Case if I could. I would keep him exactly the way he is. Perfect.

1 comment:

  1. I am so proud of you!! Thank you for sharing your triumphs and struggles as you walk where few of us can imagine walking. You bring a new appreciation for the health of our children as well as an understanding that His ways are NOT our ways!! I love you so much.
    May God continue to richly bless you as you seek Him first!!