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.

Monday, December 16, 2013

I Love the Way You Hold Me.


I Love the Way you Hold Me. 

Sometimes we just need held. Sometimes we just need to give up, look at the few steps in front of us and just trust. We need to TRUST that He will ALWAYS be near. When the world runs us ragged and we can't see the light at the end of the tunnel we need to stop letting the busy control us and just be held. We need to remember that there is always someone (many) with a harder battle and when we feel too tired to take one more step...... We need to stop and pray. Pray for those hurting. Pray for those breathing their last breaths. Pray that we will never, never take our breaths for granted. Pray that we can see the blessings in the busy., in the "not fair". That we will never be to busy, too selfish to appreciate God's grace in this crazy place. We are blessed. We are valued. We are loved. Above all else, HE will NEVER leave us or forsake us. Never.

 



"I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you, the way you

I've had a long day, I just wanna relax
Don't have time for my friends, no time to chit chat
Problems at my job, wonderin' what to do
I know I should be working but I'm thinking of you and

Just when I feel this crazy world is gonna bring me down
That's when your smile comes around

Oh, I love the way you hold me, by my side you'll always be
You take each and every day, make it special in some way
I love the way you hold me, in your arms I'll always be
You take each and every day, make it special in some way

I love you more than the words in my brain can express
I can't imagine even loving you less

Lord, I love the way you hold me
Whoa, oh, I love the way you hold me
Whoa, oh

Well ya, took my day and you flipped it around
Calmed the tidal wave and put my feet on the ground
Forever in my heart, always on my mind
It's crazy how I think about you all of the time

And just when I think I'm 'bout to figure you out
You make me wanna sing and shout

I love the way you hold me, by my side you'll always be
You take each and every day, make it special in some way
I love the way you hold me, in your arms I'll always be
You take each and every day, make it special in some way

I love you more than the words in my brain can express
I can't imagine even loving you less

Lord, I love the way you hold me
Whoa, oh, I love the way you hold me
Whoa, oh

I'm so grateful and thankful for all you've done
Wish I could tell you in a short story or poem
But all I have is my voice and this guitar
And you have my heart

Oh, I love the way you hold me, by my side you'll always be
You take each and every day, make it special in some way
I love the way you hold me, in your arms I'll always be
You take each and every day, every day, every

I love the way you hold me, by my side you'll always be
You take each and every day oh-so-special
I love the way you hold me, in your arms I'll always be
You take each and every day, make it special in some way

I love you more than the words in my brain can express
I can't imagine even loving you less

Lord, I love the way you hold me
Whoa, oh, I love the way you hold me
Whoa, oh
Oh, I love

I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you hold me
I love, I love, I love, I love the way you hold me, hold me, hold me"



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