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.

Sunday, December 23, 2012

I could never count all the ways that you change me, Baby!

The other day I was talking with an old, dear friend I ran into. I referred to the last two years as "my life turning upside down". Then I realized, that maybe our lives turned right side up? I've been through more changes in the past two (ish if you count my pregnancy) years than the whole 26 years of my life prior. It wasn't just Case, Dan's job changed, the kids went to public school from being homeschooled. The way I thought, felt, and saw things changed. Everything just changed. I look back at simple and I don't miss it. Sure it was easier but it was less blessed. I think of all the words I never knew I'd know. The people I'd never imagine I'd meet. I  not only know what PFO, ASD, VSD, IUGR, GERD, Whole Exome Sequencing, GJ and Stenosis of the Foraman Magnum mean but also what they mean for Case. I went form being a mom to being a mom, a nurse, a cheerleader, a fighter, an advocate, a scheduler, a puke catcher, a tube wrapper, a Stoma cleaner, a nurse getter and letter-goer, a charter, a form filler outer and on and on...I became a special needs mom. This is a role I would not have picked but am ever so grateful it picked me! 








When I hold you in my arms, Love
Something changes
It's the strangest feeling
The things that used to matter
They don't matter to me
When I see you
And you're smiling
How my heart aches
So full it is about to break
You make me believe in love

I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you


When I hear you, and you're crying
It resonates, Dear
In a place I didn't know was there
You make me believe in love

I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you

Beautiful baby
You're sweeter than strawberry pie
Just like the morning
Your smile brings the sunshine

I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you

I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you

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