I know those aren't the lyrics. But that's the song that's been in my head lately. Case had a pediatrician appointment this past Thursday. His weight gain in the past month month was mininal. It's looking like he will need the G-tube. He now weighs 10 pounds 8 ounces. It's a lot of working getting him to eat and drink. It's exhausting.
I was rocking him the other night and thinking about the blood work we had done in September (with Genetics). We got the results in the mail Saturday. But before we got the results I was rocking him and thinking (worrying). I said to Dan, "What if the results come back someday and he has a horrible syndrome that says he won't live past 8 years old?" Dan said, "Then I would suggest you stop worrying and love every minute with him". What a good perspective. None of us are promised tomorrow or even the next minute. It's time we embrace the situation we are in (good, bad or indifferent) and go with it. Live like there is no tomorrow.
So, yeah...the letter from Genetics said all the tests came back normal. :) They will continue testing to find "the underlying problem behind all of his anomalies". I truly don't mind (anymore) them trying to find a syndrome. I like the Children's hospital, I love the people he deals with in Genetics and I REALLY enjoy spending the day in Pittsburgh with two handsome boys. So, test away genetics. We're having fun.:) And if someday you find something, that's okay. We are only given as much as God thinks we can handle. I just remind Him from time I'm not as strong as I look. Haha.
I love this little boy with everything inside of me and yet am at at peace with whatever is in front of him. It is an incredibly free place to be. So here I am, embracing tomorrow, regardless of what it brings.
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.