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, December 13, 2012

It's been a helluva 2 years.

Here I am. 2 years later. Two years after the hell that was Case's pre-birth. It's been two hard years. Two years full of blessings and tears, hope and disappointment. Two long, worth it all years. As Case's birthday approaches I reflect on his life and pre-life. This has been the hardest thing I've ever done. Learning to take "one moment" at a time. Teaching my self not to get caught up on all the "what ifs" and  that it's okay to grieve the "never-will-bes" such as nursing my fourth, cheering him on at a football games, etc, etc. I've learned that things don't go as planed. That crying heals. That not everybody will always understand. I've seen that what I thought would be was overrated. That I need Case as much as he needs me. I realize I wouldn't change him for the world because he is a new-kind-of-perfect. I realized that no mater how many times I go though one of his surgeries, I'll probably always cry whether it be when I walk away from the OR or I hear the complications the surgeon encountered. I've grown. I've become stronger but am cautious of being "too strong". I've made INCREDIBLE friends just because Case is Case. I've learned that moms makes mistakes and pray that in all of the chaos, I won't screw my kids up too much. I've learned that trials in this life ARE His mercies in disguise. It's been a helluva two year and I'm looking forward to many, many more. 

*"Blessings" by Laura story is one of the many songs that is perfect for me, Case and this very special journey.






We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

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