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, August 17, 2012

Worthless Worry.

God, I hate worrying. It's like an involuntary emotion. It lurks up on me, and before I know it it's three am, and I'm playing in my head the words I'll say to my son's new insurance rep about how unfair his new policy is or my mind is still stuck on 6 million what ifs. It steals my peace. It steals my sleep and brings zero value to my life. A pointless, involuntary, annoying emotion that we could easily live with out. And yet, it seems no matter how many times I tell myself I won't worry, I'm doing it before I even realize it. I used to worry about things like stomach bugs and unfinished homework. Now I have graduated to unfair HMOs, birth defects, and kidney failure in a small boy.The newest prospects of worry are unresolved stomach issues in Case's tiny belly, slow growth, his HMO taking away some of his nursing (they're being stubborn dumb dumbs)...and the list goes on. I've concluded that worry is worthless, and if I allow everything that comes up against my sweet boy to worry me, I will lose my mind. I'm the first to tell you that I'm not there yet, but with every worthless worry I get stronger and more aware of God's grace in ALL circumstances even when it's not fair or easy. I am on this journey for a very real reason, and I won't let worry distract me from my very special purpose!;)
Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Philippians 4:6

 Pittsburgh has a nice view.:)
We took all the crazies to Pittsburgh Children's on Wednesday.
Good For Me lyrics
You bring a life to my bones
And a spring to my step
And a heart that knows what it means
To wait before You

And a laughter to my house
And a time to sing and shout
And a heart that knows what it means
To really trust You

When the shadow of sorrow comes
I will fall on the only One I know
Is the Rock that won't be shaken

'Cause it is good for me
To lay it down at Your feet
It is good for me to lay the good and bad
In the hands of my God


It is good for me
To lay it down at Your feet
It is good for me

You are the constant One
When my life is overwhelmed
And You stay the same
When all around is changing

And, oh, how good it is, yeah
Just to know the life You give
And my song shall ever be
That my God is faithful

And when the shadow of sorrow comes
I will fall on the only One I know
Is the Rock that won't be shaken

[ From: http://www.elyrics.net/read/w/watermark-lyrics/good-for-me-lyrics.html ]
'Cause it is good for me
To lay it down at Your feet
It is good for me to lay the good and bad
In the hands of my God

It is good for me
To lay it down at Your feet
It is good for me

And when I delight myself in You
You give me the desires of my heart
And when I confess, I think that You know best
Peace flows like a river and joy comes in the morning, and

'Cause it is good for me
To lay it down at Your feet
It is good for me to lay the good and bad
In the hands of my God

It is good for me
To lay it down at Your feet
It is good for me

And it is good for me
To lay it down at Your feet
It is good for me to lay the good and bad
In the hands of my God

It's good for me
To lay it down at Your feet
It is good for me, oh, oh

When the shadow of sorrow comes
I will fall on the only One I know
Is the Rock that won't be shaken

2 comments:

  1. Praying for you through your involuntary worries! <3
    Stephanie

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  2. You are a stronger woman than I! xoxo so much love coming your and your family's way! :D (*Also...I LOVE the tags/labels on the bottom of this page. "Grace. HMO. Not fair. Not the end of the world. Peace.")

    ReplyDelete