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, July 28, 2013

"Be thankful in ALL circumstances.."



Almost 3 years ago my life changed. I stepped into a world that was no longer comfortable. A world that can't be fixed by a prayer. Where asking for healing doesn't always mean the pain or the sickness goes away....It was in September, 2010 when I saw a perfectly beautiful unborn baby full of deformities and disease before he even took his first breath. I was told over and over and over again that my perfect baby was made wrong. That the child inside of me was deformed and incomparable with life...(I hate those words "incompatible with life", they make my stomach turn...I don't think they should be formed into a sentence....If a child is born alive then that alone is a child "compatible" with life.....Right?!) During the days leading up to the birth of Case I belonged to a "high risk pregnancy" board online. I read a post of a young mother who aborted her daughter because the Dr.s told her of the horrible things this girl was up against....they painted a picture very similar to the one that was painted of Case..."Probably has Trisomy 18, fused fingers, deformed feet, severe growth retardation, heart disease, kidney disease and on and on...."She made the choice to terminate and I did not. I do not blame her..We live in a world different from our parents and grandparents where we can easily end the lives of unborn children but.... this is not what this post is about. I am indeed pro-life but I do not judge those who are pro choice and I do not wish to defend my "pro-life" status. I am however, thankful that I chose life and that life has changed me. Saved me even,  from walking around in a world of safety and health. Case has shown me Grace in a fallen world. He is different than I ever could have imagined my 4th child to be and before his birth I believed prayers made sickness and disease go away if we believed enough and that we were usually guaranteed tomorrow. I never knew the joys of disability and challenge...."Be thankful in ALL circumstances..." is one of several verses I held onto in some of my darkest days. I knew deep in my heart that whether or not Case lived or died, he would be alright and so would I as long as I cling to the promises of God forever...Promises of life not death, joy not sorrow and peace in all circumstances. Peace that passes ALL understanding.... I do, honestly struggle with fearing the worse and worrying about tomorrow because I have been plunged into a world where tomorrow is often taken in childhood and where "ow" is a first world but it's during those days I need to remember that I am beautifully blessed with a different kind of life.<3 

"Don't be afraid to let your feelings show
If we dry up, then we won't grow"



Give thanks in all circumstances; for this is God's will for you in Christ Jesus-1 Thessalonians 5:18


"I don't know what you're doing...but I know WHO you are."






 

4 years ago.

Yesterday I needed to get my picture taken for my drivers licensee and when I looked down at my old license, I saw a young girl who decided she would hold onto her organs when she went on to heaven.......
4 years ago I was living in a different world. A would where The Children's hospital was just another hospital I've heard of and backpacks were for books. 4 years ago I had 3 healthy babies and terminal sickness was something I rarely thought about. 4 years ago when I got my last drivers license picture, I opted out of organ donation because I didn't want my organs "eyed up" and I didn't know I'd ever be living in a world that children die waiting for the gift of life. 4 years ago, I never dreamed I'd love a short, one kidneyed, webbed toes little man with all of my heart and someday, when I do pass I will leave my organs behind and I encourage you to too. Because, some day in 4 years or 14 it could be your loved one dying for the gift of life.



 

Wednesday, July 3, 2013

You tell me, life will not be pain free....



*Warning: This post starts out whiny. So, beware. This 28 year old woman is about to throw a small tantrum...

For the first time in awhile I felt fearful. I was really hoping for a break. For all of the chaos to stop and things to just be "normal" for awhile. I've been told it gets easier, that things slow down in this special needs, medically complex world but so far I've seen none of the sort. When we got Case's CAT scan results Monday, I saw real concern on the surgeon 's face. It is a face I will not forget and is burned in my brain with the other faces of fear and sorrow from his previous Dr.s. You see, in this world you learn that Dr.s don't always have answers and their hearts are as big as their brains. They really care for my boy and are doing everything in their power to help him, to make him better but their power only reaches so far. It's when things get tough that I hear God the loudest...He doesn't promise painlessness or perfection but perfect peace, all I have to do is trust...Sounds easy? It's not. It's then that I remember I've been given a big job. I'm lucky to be Case's mom and can't begin to imagine my life without him. He is more than a son, he's a hero. He saved me from the comfortable world I used to live in...Case has pushed me to the edge of normalcy and beyond. So, as I wait, constantly reminding myself to trust Him with all my heart in the rain and in the storm, I am thankful. Thankful for growth, thankful for truth, thankful for the angel we call Case.


"Come and save me
You're the only source of all the peace I need
Come and save me

You tell me life will not be pain free
What will be will always be in your control
Darkness is light to you
And all you ask me to do
Is trust what you say is true

You are stronger"


*Case had a CT scan Monday, July 1st, 2013 that revealed a Craniosyntosis. He will have surgery requiring his scull being cut apart and put back together piece by piece.