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, September 20, 2012

Natives vs. Foreigners.

Tomorrow we go to Case's first home, the Children's Hospital in Pittsburgh. Case spent his first 38 days of life there. We've spent countless hours and sleepless nights there. It has saved and bettered the little guy's life. As I've sat in the waiting room, sometimes between hours of appointments, I watch the people. It seems obvious who the natives and who the foreigners are. The natives often come with their children in wheelchairs or adaptive strollers. They come with toys, snacks and drinks. They have multiple sheets for multiples appointments and look tired. This is their life. Day in and day out their sick and or special needs child comes first. They've talked to countless doctors and sometimes hear things they've never imagined. And then you have the foreigners. The parent's of kids who have to come once or twice. I have nothing against the foreigners, I just can usually tell who they are. They come and look like they got a full night's sleep.Sometimes, they are more stressed then the natives. They are the ones that complain loudly about the long line at registration or about their naughty toddler. They don't "get" it because they don't have to. They haven't "been there". They weren't told their child would die or that the doctors "just don't know where to go from here" and hopefully, they'll never have to. Of course, if they did their idea of a bad day would no longer be a long wait in line or a naughty toddler. To them Children's is an inconvenience. To us, Children's is a life savor. Being there puts things into perspective, it helps you see how strong you are and how strong you hope you never have to be... Tomorrow he will have a GI appointment, Genetics and probably blood work. During the Genetic's appointment we will begin discussing a new, somewhat freighting genetic's test. A test that could give us an answer to the 21+ month questions, "What's causing all of Case's problems? What's his main diagnosis?" and/or this test could give us grief and heartache. Either way, if it's part of our journey, we'll know and make the right decision. It's all a part of this very special life.

"Sometimes the ones who have the brightest smiles have known and endured darkness. Knowing this gives me no reason why I can't survive my days with gloomy skies." — Dodinsky




2 comments:

  1. I hope you are able to make the decision and be at peace with it. Good luck!

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  2. Love this..."Of course, if they did their idea of a bad day would no longer be a long wait in line or a naughty toddler. To them Children's is an inconvenience. To us, Children's is a life savor."
    I pray also for peace beyond your understanding and a sweet day with your guys!!

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