Going. Going. Going. Gah!
Lately it's been just that. I'm going and going and going..Between Case's fever, poop troubles, all of his care and 3 other needy children there's not much rest for momma. At the end of the day I feel totally exhausted. As I lay in bed I let the things that didn't go my way go and thank god for all that I'm blessed with. As I prepare for yet another surgery on my sweet boy's body (this Wednesday) I feel oddly at peace. This is surgery number 5 not including his GJ tube placements or any other procedure he's gone through. No, it's not fair for a not quite two year old to have endured So. Incredibly. Much already. To know pain daily and to live hooked up to tubes. But I think of the Spiderman quote, "With great power comes great responsibility." Case has a God given power to spread joy, open hearts and bring peace without words. He does this and expects nothing in return. He is incredible. A hero. The least I can do is be strong for him and when I feel like my straight is fading I look to a bigger power. The one who knew what he was doing when He made Case Case.
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
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.