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.

Saturday, February 11, 2012

I get to be the one.

For as far back as I can remember I wanted to be a mom. When our first child, Meredith was born I finally understood the undeniable overflowing love that fills your heart when your baby is placed in your arms for the first time. I love everything about motherhood. From pregnancy to the fist day of school. Sure, cleaning up vomit and hold hands (and entire tiny bodies) during shots aren't the most comfortable experiences in the world but they are part of my job. My wonderful, beautiful job and I wouldn't trade a second of it. Even though it took days before I held Case I still felt that overwhelming rush of love the minute I heard his beautiful cry. When they pulled him out of my belly we were uncertain of his future. I didn't know if we would bring him home from the hospital. I wasn't sure if Dan would ever teach him how to ride a bike or if he would ever help me bake cookies. All we knew was that we wouldn't take one second of his life for granted. The same concept applies to our daughters. Jesus made me the mother of 4 beautiful children. I have the best job in the world!

I heard this song this morning and it took me back to the day of Case's birth. The beautiful, uncertain, blessing of a day.


Well hello.
Little Baby.
Your eyes have never seen the sun
You should know
Little baby
That i am the lucky one

I get to be the one to hold your hand
I get to be the one.
Through birthdays and broken bones
Ill be there to watch you grow
I get to be the one.

Don't feel alone now.
Little baby.
Do you hear me singing you a song
I can't wait to show you
Little baby
How to crawl
How to walk
How to run

I get to be the one to hold your hand
I get to be the one.
Through birthdays and broken bones
Ill be there to watch you grow
I get to be the one.

How does someone so small
Hold my heart so tightly
I don't even know you
I love you completley

I get to be the one to hold your hand
I get to be the one.
Through birthdays and broken bones
Ill be there to watch you grow
I get to be the one.

I get to be the one to hold your hand
I get to be the one.
Through birthdays and broken bones
Ill be there to watch you grow
I get to be the one.



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