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.

Thursday, November 1, 2012

When You're here I'll never be lonley.

"So hold me. When You're here ill never be lonely. You're my favorite part of this story. So, sing it again and again.."

I woke up with those song lyrics in my head Tuesday morning during Case's inpatient stay at Children's. Case had his tethered cord release surgery on Monday and is doing great! We stayed at Children's until yesterday. I'm stayed in his room with him and had a peaceful stay. The hardest part was when Case reached his hands up and from laying flat in his hospital crib and said, "wanna ge owwwww" (want to get out). He had to lay flat for 48 hours. He's amazing and special for a very apparent reason. Hospital stays, needles, doctors and medications have become a part of his life so much that it's his norm and he walks down the halls like he owns the place. I've felt a particular amount of joy and peace this time around. I belong too. Being a special mom is who I am and runs deep in my blood. I talk in medical terms, fight for a single room and stop the beeping machines like a pro. I've seen so many familiar faces and made new friends. I ran into the geneticist and GI doctor just in passing and they booth stopped to talk about the special boy. It's apparent that God has written a different story for this family and He is my favorite part. When I laid on the padded bench in a cold hospital room with my "medically complex" kiddo just feet away hooked to tubes and IVs I felt a very apparent calmness, like god had His hands wrapped right around my heart and wouldn't let any of the sadness, fear and frustration that usually comes with a surgery and hospital stays go in there. I've read many stories and poems about special needs parents and agree with most of the words but my favorite part in those stories is when ordinary people become extraordinary because God has given them something that is often considered by the outside world as unsatisfactory. Dan and I were given a very special gift that has opened our eyes to a very blessed world. Even our girls understand that different isn't defective, different is beautiful and God knew that this family could handle a very special kind of beautiful.;)




When I breathe
It's like a song you give me to sing
And I sing "Oh... amazing"

So hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me

When I sleep every morning
You give me a new day to dream
And you dream with me

So hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me
[ Lyrics from: http://www.lyricsmode.com/lyrics/j/jj_heller/tell_it_again.html ]
I love when you hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me

My heart is whole
You're the light inside my soul
How deep is your love

You make me see
What it looks like to be free
I need your love

So hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me

I love when you hold me
When you're here I'll never be lonely
You're my favorite part of this story
So tell it again and again to me

Tell it again and again to me
Case sleeping on my leg the night before surgery.
Mr. Popular flirting with the ladies that made us a meal at the Ronald McDonald House.:)
Future doctor.
Morgan took care of Case in the NICU. We ran into her the night before surgery.
One of Case's favoroite NICU nurse's Elizabeth. She fell in love with him all over again.
Ready for surgery.
Getting checked out.
After surgery.
Just chilling on his back.
"Uncle" Chris came to visit.
Tolerating...:)
Taking a ride.
Home sweet, home.

3 comments:

  1. Yeah? It wasn't mine. Actually, I wasn't going to post it. I didn't think it "flowed" well enough! So glad you like! It' growing on me.

    ReplyDelete
  2. Oh Liz, it's one of my favorites too! :)

    ReplyDelete