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, April 7, 2013


Did I ever tell you the story about grace? When I had my routine sonogram around 22 or so weeks, they told us my due date was wrong, moved it back two weeks (Case was technically only 2 weeks early, not 4) and told us he was a girl. A week later, I got a call from one of my favorite nurses saying there were problems with his scan. Could be nothing but it looked like there was a spot on his kidney, heart defects and growth issues. We had a second level sonogram at 25 weeks an hour away from home. My hopes of it all being nothing and of my baby "girl" being fine were shattered. There were problems. Big problems. Lots of problems. I cried. Dan held my hand. The Dr. said an amniocentesis was very nessacery and could save our baby's life. I looked at Dan. He looked at the Dr. and said okay. The scan was long. Sad. The Dr. Looked at me and said, "You've done everything right. There is nothing you can do to make your baby healthy or normal that you haven't already done. You've done nothing wrong." I went to the bathroom and cried again. I prayed. I heard the word "grace" very clearly in my mind. I assumed that was our "daughter's" middle name. We would name her Parker Grace, whether she lived or died. When I got back to the room, my Dr. said our baby shows a lot of signs of one of the Trisomy's. He said he'd call in 2-3 weeks with results. It was a long 2 1/2 weeks. I hoped that it was only Down syndrome....I looked up the word, Grace...It means blessing/favor. How appropriate. Well, obviously, I was pregnant with a boy. And soon enough, the Amnio revealed that. Things got worse. They (to this day) haven't figured out the underlying cause for all of his issues and with every sonogram in Johnstown and Pittsburgh (I had 20-30 total) there was more bad news. I kept ahold of the word grace and although I gave birth to a Case (brave/bringer of peace) Daniel (God is my judge) the word grace is tucked deep in my heart. Even on the darkest days, I remember that our Case and the journey we are on is a blessing/favor not a curse. We are loved and have been picked for a special, sometimes very hard, grace-filled journey and for that, I am ever thankful. I am growing. I am getting stronger. Case has changed our family and my marriage for the better and I wouldn't change our Case for the world.



Saturday, April 6, 2013

Oh, Worthless Worry....

Sometimes I play events over and over and over in my head before they even happen. Things that plague me. All my worries then consume me, make me weary and on edge. It's as if I think God needs my help. I feel like if I don't figure everything out, nobody will. Sometimes I've wondered if I have bad luck. Like all the stupid things that could go wrong do and in the matter of a week, I've been in a car accident, bought a house with a broken fridge, cut up telephone wires and electricity issues. Had children with the flu, a whole lot to do and a leaky ceiling...... In that same week, I was puked on, dripped on and yelled at, disrespected, mistreated and let down. We sold a house, bought a house and tried to settle in despite all the crazy shit I just mentioned. I cried, a lot. I wondered if I wasn't listening right, being punished or never going to have relief from migraines. All of this on top of beeping pumps, med schedules and trying to get four kids comfortable in a home an hour away from home. I was over it. I wasn't sure God got how done I was. I've been through more in the past two years than some have in a lifetime. I watch a tiny, man find his place in a world so different from him and I've seen people change. Some for the good. Some not. So, during my crazy week (less than a week ago) I wondered if I'm just unlucky. If it's just always going to be hard to be me. If I'll ever, EVER get a break from the constant worry in my head. And as I played the same scenario over in my head for the 100th time, something that may never even happen but had me all in a tizzy because someone I've only met once, threatened to make things even more difficult on me. I prayed. I stopped "fixing" a problem that doesn't exist for the 100th time and I cried out. I can't live like that. Sometimes I even fear that God will take it all away (like he almost did Case) to teach me all I need is Him. After my prayer I opened a book I've never read, a gift, to this, "When doubt whispers, 'I can't stop worrying'." And then the quote, "Rehearsing your troubles results in experiencing them many times, whereas you are meant to go through them only when they actually occur." Oh. My. God....You know! You (God) know that I feel a little crazy and can't stop worrying NO MATTER how HARD I try!!! God, I saw you almost take my baby away. I've seen you take lots of babies away. I see a mom barely older than me fighting stage 4 cancer and Lord, I'm scared. I'm scared that you'll turn my world upside down again and this time I won't ever turn back around... Lord, please take this worry away. I believe IN you, now, help me to believe YOU. To believe that you will never let me go. That you will always hear my cries and go before me. Help me to know that being out of control is the best way to be because it makes me put all my trust in you. You alone are enough.

 Lost your way and you don't know how it happened
So much time you wasted chasing satisfaction
Seems like there's no where else to go
Please, I wish that you would come home

Oh, don't be so afraid, you think that you're too far
But you never are, you never are, you never are, are, are
So scared that you're too late, too hidden in the dark
But you never are, you never are, you never are, are, are

Grace is underestimated
All you ever really have to do is take it
God is bigger than the times we fail
So why can we not forgive ourselves?

Oh, don't be so afraid, you think that you're too far
But you never are, you never are, you never are, are, are

So scared that you're too late, too hidden in the dark
But you never are, you never are, but you never are

You will never be perfect, oh
But you're still worth it
You've gotta just believe

Oh, don't be so afraid, you think that you're too far
But you never are, you never are

Oh, don't be so afraid, you think that you're too far
But you never are, you never are, oh
So scared that you're too late, too hidden in the dark
But you never, you never, you never are, you never are

You never are, you never are, are, are
You never are, you never are, you never are, are, are

Case bands.

Hi, faithful followers! I have some pretty cool bands about a pretty cool guy that you can purchase.:) They are $4 each including shipping (in the US). Simply click the "Donate" button on the right side of the blog and write how many bands you want and your shipping address.:)