It's true, through the darkness and the trials. At the hospital and home, He will be with me always because I am loved and I am valued. In a world of medical. When it seems all I do is make phone calls, shuffle paper work and travel to specialists because my child is special, it's easy to lose myself. My mind frequently spins with the last medical info or the dread of the upcoming test/hospital stay/procedure. It's a burden that is heavy and constantly reminds me that there is no end in sight....but then I remember, I am loved. I am valued and I matter. I remember when I carried my miracle who's insides and outsides were being formed intricately and uniquely He was whispering His promises into my heart. That this is a beautiful, blessed and different journey. That we'll always and forever be okay because even though our future is uncertain He will always have His arms wrapped tight around us. He's always close by to hand the ever looming anxiety and fear to. I am not ashamed of bad days because bad days don't mean I'm a bad person, they just mean I AM a person and I am growing. I can do this because He is with me and shining enough light in my path for the few steps in front of me and all I have to do is step.....one foot at a time.
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.