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, April 24, 2014

Dear Case

Dear Case,

You are our inspiration. You make us stronger. You've touched tens of thousands of people with your strength. Because of you, mommies are stronger when they have babies in the NICU. Because of you, grown ups decide to better manage their diabetes and stop sweating the small stuff. They see something beautiful. They see Jesus in you and want to be more like Him. You won't understand till you're older but you've shown me that perfect is an illusion. That different isn't defective. Different is beautiful. You don't know this either but, you've been though hell. You've been through more in you're tiny, 3 year life than 10 grown ups put together and you, my beautiful boy have done it all with a smile. I will never be able to thank you enough for being so special, for making our lives brighter. As you age, I see you understand more. You know what's happening soon.....that you're going to the hospital again. That they are going to cut you *again* (for the 9th time to be exact....). But you're not running. You're not worrying. You know.....you know God has incredible plans for you and they began the day you were born. You're so handsome, so loving, so kind. You know no other life and that's okay with you because you are a hero. Our hero. 
God bless you sweet baby, today and always. May you never be ashamed of your differences and may you always know just how much of a blessing you are. 

Love, 
Mom 




Tuesday, April 15, 2014

What Doesn't Kill Me Makes Me Stronger.

"Your grace abounds in deepest waters
Your sovereign hand will be my guide
Where feet may fail and fear surrounds me
You've never failed, and You won't start now"

Two weeks from today I will be in the Pediatric Intensive Care Unit at Children's Hospital of Pittsburgh. I'll be holding a tiny 3 year old with a hole in his scull and a catheter jammed in to monitor Increased Inner-Cranial Pressure in his brain. I'll be praying, wondering, maybe crying or laughing. I won't know if the following Friday I'll be handing my precious 4th born to a Neuro and Plastic surgeon for an 8+ hour scull, brow bone and fore head reconstruction surgery with.....I won't know how that is going to go if it does happen. I will have to trust, continually turning my anxious thoughts over to a sovereign God believing he will never give me more than I can handle and by that I mean what doesn't kill me makes me stronger.......
Before the birth of our son all Children's to me was a hospital Giant Eagle occasionally asked me to donate to. I usually said no do to lack of time and the inability to spare a few dollars. Fast forward 3+ years and Children's is so much more. It is where I have been broken and rebuilt. It has saved and enhanced my child's life in ways I never imagined. It houses some of my closest friends and second family members. It has become a mission field of sorts where I have been pushed to the edge of my faith. I never considered myself talented and all I wanted to be as a child was a mom. I loved babies and pretended like I had 8. I was the last one picked for dodge ball at gym class, can't carry a tune in a bucket and used to think God desired his people to beable to serve him with the visible talents he gave them.... I was wrong. I had to dig to find that talent doesn't always look like a beautiful singing voice or a pretty painting. We blossom where we are planted and I believe that Case is the exact child God planned for our forth. Not broken, not a mistake but a beautiful opening to a world of unknown. A spirit full of so much love and mystery is glows!
So, when I start to feel like God mistook me for someone stronger, that I can't go on any longer I will give thanks in all circumstances; for this is God's will for me (for Case, for our entire little family) in Christ Jesus.

"Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger"


"I will call upon Your name
Keep my eyes above the waves

My soul will rest in Your embrace
I am Yours, and You are mine
I am Yours, and You are mine
I am Yours, and You are mine
I am Yours, and You are mine"

 
Please take 5 minutes to watch this music video. The song has become a theme song for me lately and holds many blessings. <3
 

 


Thursday, April 10, 2014

Update.

So, I usually do all of Case's updates on his facebook page. If you don't follow him on facebook, click here.
I'm going to TRY hard to update the best I can on here too for those of you that don't have a facebook account but for now, please pray for the important things going on at the end of this month.:)


On April 28th (Monday) I'll be admitted to Children's for a procedure Tuesday morning. They will place a catheter into my brain to measure... the pressures in my head. I will stay in the PICU (Pediatric Intensive Care Unit) while they do this. On Thursday, they will take the catheter out, do an another MRI (I just had my 3rd in December) and decide if I need a Cranio Vault Repair (an invasive and intense surgery where they will completely reconstruct my scull-*and my forehead, etc.)
It's all a bit overwhelming but we know that God has great plans! We will be fine either way....If Case gets the surgery, it could really increase his quality of life and eliminate his headaches. If he does not get the surgery, we are confident his incredible team at Children's will find out what's wrong and treat it.
Just pray.

Wednesday, April 2, 2014

Rise Above Your Circumstances.

Rise Above Your Circumstances. 

I've heard that phrase 100 times and never gave it a second thought... Until last night. Rise ABOVE your circumstances. 

It's been a long month (I think I say that every month) with "normal" SN issues, 3 long days full of appointments, blood work and tests at Children's, long car rides, and you know, raising four children....
I'm not telling you all this to complain, I'm telling you this because it was last night, while I was tossing and Turing that I heard it "Rise above your circumstances."
Rise above the issues, the system, the chaos, the pain, the fears that this will never be easier and BE AT PEACE. That's what's crazy about peace, we can have it admist the war. Tucked deep, down in our heart. We can feel it in the PICU and when our son's case workers won't won't call us back. We can feel it when we're tired, sad and happy..... 
You see, life is not going to get easier. There are no magic genies or wands just an ever powerful God that has strength and peace unlimited.....and after one crazy month, while I'm sitting in my sons room at 6 in the morning catching his vomit and rubbing his head (not because he's sick but because his tiny body experiences pain, chronic pain every day) I CAN HAVE PEACE. Because, "HE knows the plans he has for me" (for Case, for this entire family....)and they are good. 
I've spent the month listening to Drs tell me how complicated my tiny 3 year old is, that they've never treated anyone "quite like him". I've added to his unending lists of diagnosisis and I've held back tears while I asked a dr if this was "his son", would he give him another chane? Would he run more tests? Would he figure out why he vomits and has headaches most every day of his life?
I'm not a dr but I'm his mom. I am thankful for the beautiful blessing of Children's, for the incomparable care and that even though my son is "incredibly complicated"...they won't give up. I love him and his sisters with all of my heart and I will always be their voice. But, they ultimately belong to God. Always will. They will always be "okay" because they are in God's hands. 
I don't have to be fearful and admist sleepless nights, long days and hard battles I can rise above. I can have peace and have it abundantly and you my friend, can too. No matter what your "circumstances" are you can have rise above them and peace abundant. 

 

"I am calling you to a life of constant communion with Me. Basic training includes learning to live above your circumstances, even while interacting on that cluttered plane of life. You yearn for a simplified lifestyle, so that your communication with Me can be uninterrupted. But I challenge you to relinquish the fantasy of an uncluttered world. Accept each day just as it comes, and find Me in the midst of it all."-Jesus Calling

(Verse)
I can barely stand right now.
Everything is crashing down,
And I wonder where You are.

I try to find the words to pray.
I don't always know what to say,
But You're the one that can hear my heart.

Even though I don't know what your plan is,
I know You're making beauty from these ashes.

(Chorus)
I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah.

With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah.

(Verse)
You know the things that have brought me here.
You know the story of every tear.
‘Cause You've been here from the very start.

Even though I don't know what your plan is,
I know You're making beauty from these ashes.

(Chorus)
I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah
.

With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah.

When all is taken away, don't let my heart be changed.
Let me always sing Hallelujah
When I feel afraid, don't let my hope be erased
Let me always sing Hallelujah.
Let me always sing Hallelujah.

I will always sing
I will always sing
Here's my broken hallelujah.