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.
Saturday, September 8, 2012
Choose this day whom you serve...
As a mom of a medically complex, special needs miracle the timeless words "Choose this day whom you will serve" have embodied a new, young meaning to me. When I wake in the morning and the thoughts, phone calls, beeping and retching and chaos start I have a very important choice. I can choose to serve, listen and be enslaved to the never ending demands of my life or I can choose a peace that passes my shallow understanding. I have the power to not give into the never ceasing tug of worry and stress. I don't have to be enalaved by the chaos that is the life of a special needs mom with 3 other busy kids. Life is life, it will always be. No one said life is easy, comfortable or painless but we all have a choice. Today I choose to serve Him. Him who loved me enough to make me a special mom. Him who has not allowed me to be comfortable for very long, instead has stretched me to new lengths. And again in ten minutes when my mind starts to race, the pump starts to beep, my three year old has destroyed something and I'm on my way to the bus stop for the other two kids I'll have the chance to choose again...