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, January 12, 2013

I am Trying to Understand How to Walk this Weary Land.

Being a mom is tiring. Being a mom of four, with an overworked husband and a special needs, medically complex child is beyond exhausting. You have days of weariness before you even realize how weary you are. You fill out piles of paper work, call an endless amount of doctors, hold puke rags, give meds, order supplies and the list goes on. You thank God for your blessings but sometimes wonder if he has you mistaken for someone else, someone stronger. As you walk this weary land you gain strength, just before you break. You learn that "me time" is vital to your health even if it means locking yourself in the bathroom. You seek out others who get it, who also walk this weary land. You are dumbfounded by the out poor of love and kindness sometimes by people you've never met. You savor the cuddly moments, silly dances and coffee from friends. You try (hard) to take it moment by moment and tackle the problems and not focus on all the "what ifs". Sometimes you feel like your world is shaking but when you look up, heaven stands. This is the walk I was given. It is not easy. Sometimes it comes with headaches, tears and brokenness but it is blessed beyond measure and is full of a peace that passes all understanding...Please bear with me as "I am trying to walk this weary land.."

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That you would take my pain away
You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

When you walked upon the earth
You healed the broken, lost and hurt
I know you hate to see me cry
One day you will set all things right
Yeah, one day you will set all things right

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

Your hands that shaped the world
Are holding me
They hold me still
Your hands that shaped the world
Are holding me
They hold me still

When my world is shaking, heaven stands
When my heart is breaking
I never leave you
When my world is shaking, heaven stands
When my heart is breaking
I never leave
I never leave your hands









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