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.
Thursday, December 1, 2011
Pot holes and detours.
My husband describes this journey with Case as a road with pot holes and detours. He's right. I'd like to add that there are also bumps, valleys and hills.
Last night Case fell in a pot hole which lead us on a detour to Altoona Hospital's ER. We weren't planning on that trip. The girls and I were watching t.v.. Dan was sleeping for night shift and Case was playing on the floor in front of me. He started crying so I picked him up. I didn't realize his tube (he has to be connected to a long tube and a bag for 24 hours for 2 weeks. After the 2 weeks he will only be hooked to a tube at night for feeds.) was caught on something. I felt his Mic-Key button, tube and all pop out. He started screaming. Liquid came out of the now exposed hole and covered his shirt. The color drained from his face. It was vital that we rush him to the local ER since the the button was recently placed and the hole could close quickly. My dear, sweet mother-in-law came immeadiatly to watch the girls and off we were. Once in the ER I was still a little shaky but Case, well he was just fine.:) He lay there on my lap, face pale, oozing hole in his belly (I covered it with gauze) and he was smiling. In the 5 minutes we waited to be called back, he had made friends with everyone around him. He smiled, waved and chattered with them all. As I looked down at His perfect baby my heart filled with gratitude. Peace overflowed within me. The fear that had previously overcome me had gone. Long story short, all went well and Case took an uncomfortable opportunity to show pure love.
I thank God for this road we are on. The path is narrow and I can only see a few steps in front of me but I feel blessed. Thankful beyond words to be Case's mom
I have faith that God is living out a divine plan through me. Have faith in God. -Mark 11:22