With the birth of a medically complex, disabled, special needs child comes an extra does of love. Not for that child (you love him as much as your other children) but FROM that child. From deep inside his soul. Love covers you. Love gives you the strength to fight the long fight and year, after year, love stays. You feel love for the homeless-looking man that stops to admire your special gift. You feel love for the countless Dr.s, specialists, therapists and nurses that save and enhance your special child's life. You love the children that lost their battles and the momma's that morn their loss. You love the children in the mist of their battles.You love those you never met that love, encourage and support you on this rocky road. You're in a whole new world. A world that use to terrify you. You continually remind yourself that worry and frustration kill, steal and destroy but love covers a multitude of sins. You will be wronged. Lied to. Sinned against. Not everyone will love your child as much as those who advocate for him. Most won't understand that with the first "second level" sonogram your life changed (for the harder and the better). You got news that shook your entire being...You then had to fight for the sick baby in your belly and pray he defeats the odds. When he was born you become more than a mom. You become a nurse, a fighter, an advocate, a pusher, a Dr., a cheerleader, a secretary and more. When you feel like you're crumbling, like God mistook you for a stronger woman that love envelopes you and gives you strength for the journey. He never promised it would be easy, He promised it would be worth it....
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.