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.
Wednesday, August 26, 2015
Well, when you have a chronically ill child with oral aversions and digestion issues, the ocational "ice cream" treat just doesn't cut it.....
You see, sometimes my son has multiple appointments weekly. We've been driving 4 hours round trip to Children's at least once a week plus the normal "well check", shots, etc. For the last 4 1/2 years, I'd promise him a gift from the hospital gift shop. So, now he owns everything under $10 in that gift shop..... half of it's broken, the other half deflated....
After a meltdown from a long day and an indecisive boy at the Children's hospital gift shop a week ago, his home health nurse suggested we fill a bag from the dollar store, put it in the back of the car and every time he has an appointment, etc., he picks a treat from the "feel better bag".
The world is a happier place....or at least our drive home is more peaceful.❤️
Sunday, August 16, 2015
Every year since my husband and I got married, we've traveled the 8+ hour trip to spend a week at our favorite beach with extended family.
We've done it with nursing babies, teething babies, potty training toddlers, motion sick preschoolers, a tube fed baby but never (not until this year) an IV dependent, medicine needing and tube fed 4 year old that wakes up multiple times a night sick and in pain.
When Case got his central line in January, I can honestly say I was hesitant taking this yearly trip.
When he then landed in the hospital 5 times in 5 months this year with infection, low platelets and various other problems, I was convinced we shouldn't go.
All we had to bring. Things I couldn't just pick up at Walmart if I forgot it.....The billions of bacteria I was sure we're just waiting to crawl in his line...All of it scared me and I'd consider myself one that isn't easily fearful. It would have "just been easier to skip the trip".
Then, during one of our April admissions I talked to one of my favorite Drs on his Intestinal Care team. Long story short, she said to "let him live". Told me all the precautions. He couldn't swim but he could splash once I cover the crap out of the line and dressing.
It was those words, "let him live" that hit a feeler deep in my heart.
Yes, we'd have to scope out the nearest hospital. Yes, there was a chance he'd wind up life flighted back to PA with infection, a broken line, etc., etc. (I thought of every worse case scenario).
Truth is, it would be easier to keep him home. Heck, it'd be easiest to make him a bubble boy! But we didn't. Not because we're irresponsible or selfish but because we need to "let him live."
In January of this year he was diagnosed with intestinal failure on top of his dozens of other diagnosis'....and the reality is, we don't know what tomorrow brings.
We hope to give him every opportunity possible to be a boy. To explore and enjoy life outside the four walls of the hospital.
Is it easy? Heck no. It's hard work! There are tubes and pumps. Puke and medication.
Just a day trip requires so many supplies and medicines, syringes and stops but this summer was the summer we "let him live."
From the beach to fishing and amusement parks, Case and our little family lived in the moment and were blessed to enjoy the summer together.
We're there hospital trips, a broken central line and other shenanigans? Yes. Was it because I was irresponsible and not careful, no. It's because this new life, this crazy journey is full of unknowns but those unknowns won't stop us from "letting him LIVE!"
Sunday, August 9, 2015
"Babies are like computer programs. Lots of pieces put together to make one big picture. YOUR baby's programming is all wrong...."-one of my many, many OBGYNs during my very complicated pregnancy.
My baby was "made wrong"....sick inside of me. No mater how healthy I ate. No mater the fact that I didn't smoke, do drugs or drink, my baby was disabled. He was full of health problems and I prayed. I prayed he'd live. I prayed that if he didn't, I'd have the grace a peace to say goodbye and still exist....I prayed for healing. I prayed for peace in the storm but above all else, I prayed for God's perfect will to shine through the darkness.
Did I believe God could heal my baby completely? Yes. Did I pray for that? Sometimes but above all else I prayed my heart would stay thankful in ALL circumstances and that this tiny life inside me would bring God glory.
Fast forward 4 1/2 years. God didn't heal my child and that's okay. I'm at peace with that. Does my heart break a little with every surgery, every procedure, every time they put him under, blow IVs, hold him down? Yes but God can put that back together. He gives me strength along the journey. Sometimes, strength is my only choice. Do I think I'm not Christian enough? Not worthy of a heathy son? Not Godly enough? Do I think God punished me for not being "enough"? Absolutely not.
My child....no...God's child was made perfectly imperfect and I'm okay with that.