Meet CASE!

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.

Friday, May 29, 2015

A Special Needs Baby Changes Everything.


When a child is born with special needs, the whole family is effected. You know the quote, "A baby changes everything."? 
Well, a special needs baby changes everything and everybody. 
We'll start with the mom. 
I went from a mom of three "typical", healthy girls. The Children's Hospital was just a place kids with cancer went to that I'd ocationally donate a dollar to so my kids could sign their name on a little, paper gold pot or rainbow to be displayed behind Walmart checkout lines.
I had a part time job cleaning homes and offices, made home cooked meals almost every night. I signed permission slips on time, never missed sending a snack into preschool and had more than enough time to read stories to the girls, play with them and do all the mommy things I dreamed I would.  
I had regular dates with my husband, spent plenty of time complaining to my friends about the exhaustion of teething and ear infections....and so on. 
Fast forward 4 some years....
I'm am no longer a house/office cleaner. I quit my job when my son was born to be a full time mom/nurse/advocate/hospital bench sleeper/secretary/insurance appealer/ therapist/etc., etc. More times than I'd like to admit, I throw chicken nuggets and fries in the oven or let the kids eat creral for supper because I'm just too tired to cook....
I've driven tens of thousands of miles to and from Pittsburgh Children's hospital and spent so many days inpatient with my son that I could find the cafeteria with my eyes closed. 
I forget to send my daughters snack in so many times that the casual, "you forgot snack again and we had to eat last weeks left overs" doesn't even phase me.....
I lose permission slips and find myself calling the school office between doctor rounds while sitting beside my son's hospital bed more times than I'm proud of. 
My life is one, big, disorganized, unpredictable, beautiful mess. 
By the middle of May this year alone, he'd been admitted 5 times and had several outpatient specialist appointments....
This takes me to the siblings. 
They went from their biggest concern being "Will mom make me eat the peas she made for supper?" to, "Will mom and Case come home from the ER tonight or will I go days before I can even visit them at Children's..."
I've kissed their teary faces goodbye more times than I can count and answered questions like, "How long will you be gone?", "How sick is he?" and, "Are we going to spend another Holliday in the hospital?" With, "Sweetheart, I really don't know but what I know is, everything is going to be alright." Then I silently prayed, "Oh Lord, please make everything alright and guard their tiny hearts."
They don't know if next week mommy will be at their Gymnastics practice or if she'll be with their brother while he fights a central line infection. 
Their lives turned upside down and normal is no longer a thing. They've had to grow up quicker than I would have liked and mature beyond their years. They know, have seen and live with the reality of chronic illness and it's not pretty. 
They've seen their brother grey while his heart rate rose and the nurse bolased fluids into him. They've seen more poke, IVs and brutal surgery recoveries then their little hearts could handle. 
Through it all, they amaze us. Their compassion, love and understanding of other children with different abilities is remarkable. 
They know all about feeding tubes, central lines and growth hormone shots. 
They've done presentations to their classes during Feeding Tube Awareness Week and talk freely about such things. Things I knew nothing about until we were flung into the Special Needs life. 
Their lives are different from their friends and that's okay. They are so loved, educated and blessed. 
This brings us to the dad, my husband who's stuck by me through my crazy breakdowns, pity parties and stress eating....
His life was forever changed the moment the specialist read our 24 week ultrasound and said, "everything isn't okay" and the words of well meaning strangers that said, "boy or girl never mattered to me.....as long as it's healthy" cut like a knife. The reality was our baby wasn't healthy and my husband stood like a strong rock as the waves of this new medically fragile life style hit hard up against him. 
He's strong, works hard, even when he'd rather be at the hospital with me. 
He's learned how to throw lunches together in a hot minute and brush knotty hair on the way to the bus stop.  
He's now my councilor, my strength and the daddy to a boy he's watched hurt, cry and suffer. Something a daddy should never have to do. 
He's watched his little girls cry while missing mommy and has been Mr. Mom during long hospital stays and sleepless nights. 
He's been torn in three directions between the hospital, the girls and work while somehow manages to single handily financially supporting us all...

It's true. A baby changes everything....
A special needs baby changes everyone. 
We aren't just a family with a little boy with special needs. We are a family that sticks together like glue and knows that even when the days are hard and the future is unpredictable, we have each other. 
We take each day with stride and try not to sweat the small stuff because we know how hard the "big stuff" can be.
 
 
 
 
 



1 comment:

  1. Although my son's medical issues aren't nearly as severe as Case's, our situations are similar. I had 3 healthy children before my tubie came along and changed our lives and my parenting skills completely.

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