Do you see that? I'm pretty sure it's a double chin!!
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, December 10, 2011
Medically Case is doing well. His fontanel is finally getting smaller. He is slowly but surly gaining weight. 10 Pounds 13 ounces!:) He changed his army crawl to a half sitting/half crawling kind of thing (to avoid scooting on his Mic-Key button:). He pulls himself up and walks holding on to furniture. His liver ultrasound came back normal!! He still sees Occupational Therapy (for eating) and Physical Therapy regularly. He has a home nurse coming 2-3 times a week for a while to monitor his weight and over all health. I feed him orally all day then give him remaining calories thought his tube at night. Sometimes It gets confusing and more times then not I end up with formula and stomach juices on my pants and the carpet. Maybe I should get the carpet in his bedroom cleaned for his birthday. :) Oh, Yeah... the big guy will be one on the 21st! All and all he is perfect, happy and a blessing beyond measure!:)