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.

Tuesday, June 26, 2012

He's got a little special in him.

Case did GREAT during his very busy two days at Children's. Oh, and it turns out I am fully capable of driving to, from and in Pittsburgh (who would have thought?:). He rocked his full day Thursday and still had energy to visit his buddy Ramsey in the hospital. Ramsey is my friend Lisa's son. Lisa and I met at the RMH while our boys were hospitalized in the winter of 2011. Sweet Ramsey had to have another surgery, and I was blessed to visit him and his amazing family during his recovery.

All of the appointments went well and our day ran smoothly. Jane, our sweet nurse, was wonderful to have along and really admired Case's strength and stamina. For such a little guy, he does beyond great. He didn't even cry when they took blood! Friday was also a great day for our great boy. We waited for hours to get his G tube changed to a GJ. That also went well. We were shown how to use it and told again we need to head straight to Children's if it gets pulled out. Like I said in my previous post, Case had a great weekend too! Probably the best in  a long time. He didn't vomit or retch much and seemed to handle the new J feeds very well. But Sunday night and Monday were rough for our guy.  He ended up retching several times Monday morning and bringing up stomach bile a few times. He had a previously scheduled pediatrician appointment so we took him. The doctor wasn't sure what was going on but hoped it was maybe teeth. Case does have teeth coming in and had a much better day today. While we were at the pediatrician, three little kids saw Case scooting with his backpack. They were very curious and asked their mother about him and his pack. She smiled at me and said to her kids, "That's a feeding backpack and that little boy has a little special in him." That lady may never how how special that made me feel and that her kind words made my day bright. She is right. He has a little special in him and is worth all the trips, all the appointments, all the time, all the money and all the vomit covered shirts, because I am raising a boy full of special and I'd have it no other way.

 "Oh, this is how it starts, lightning strikes the heart
It goes off like a gun, brighter than the sun
Oh, we could be the stars, falling from the sky
Shining how we want, brighter than the sun

I've never seen it, I found this love, I'm gonna feed it
You better believe, I'm gonna treat it better than anything I've ever had
Cause you're so damn beautiful"
Having dinner at the RMH with Ramsey's brother Reed.

Big man and his bag.