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, June 27, 2013

"Oh God, I'm holding on to you."

"Well I tried to be everything I need
But a broken heart was all that I achieved
Still I don't understand
Why it's taken me so long to know You never change
Your love remains
Oh God I'm holding onto you"

When nothing stays the same. When tomorrow is always different than I've planed, I'm holding on to you. Oh God, it's out of control. I never know what Case's Dr.s are going to say or what his insurance is going to deny next but I know you are near. You've picked me for a very special job and everyday I find myself needing to let go...remembering that You know better than me. I never could have planed all this. I never would have planned all this but it's because I never knew how full my heart would be once I became this mommy you've called (more like drug me) to be. I  am thankful. I am humble. I will fail more than I succeed. To You be all the glory. Without you, I'd be nothing. Thank You for being by my side for every diagnosis, every tear, every failure, every headache and every blessing. Because, without the rain there would be no rainbow. Thank you Lord for the Very Special family we have become. 

Tuesday, June 11, 2013

It's just, well...what I do.

It's just..well..what I do. 

When I go to the dentist or to my Dr. I naturally get asked what I do. I tell them I stay home with four kids, one has special needs. The next question is, "What all is wrong with him?" I don't usually have all day so I give them he short list...the really short list. I usually get blank stares and "I'm sorrys". It's those moments that reality slaps me in the face. That I remember that 2 1/2 year olds are usually starting to get independent. It's about this time that they sleep through the night and you can just put a diaper in your purse and leave the big, bulky bag at home. I remember that beach trips and outings were less trouble when the girls were 2 1/2. Less preparation...less work. I watch as my Dr looks concerned at me and says, "How do you do it?". I never know how to answer that. I don't have super powers. I've never been very patient and I'm grumpy on too little sleep. I just do it...really. I find inner strength that I didn't know I had. I trust. With all of my heart, I trust that Case is Case and God made him special for a very special reason. I take what was handed to me and decide to let it make me better not bitter. I succeed and I fail. I laugh and I cry. I take the blessings as they come, whether it be a meal from a friend or and presents from a stranger. I'm humble and forgive myself when pride takes over...I just go and hope that at the end I will make my children proud. I don't know if things will ever get easier. I don't know if Case will ever stop needing his tube or surgeries or if Pittsburgh trips will slow down but I hope, like the 2 1/2 years previous I will always find strength on this journey....As for my new Dr. that listened so intently to Case's ailments and the story of how we thought we'd lose him...He looked at me at the end of my visit and said, "I'm not a pastor and I'm not a priest but I believe with my whole heart that children like yours are given to mothers like you for a very special reason. At the end of the day you wouldn't change him because he is a blessing." He's right and it doesn't take a pastor or a priest to figure out that different isn't defective, different is beautiful...

Monday, June 3, 2013

"I promise it will be worth it".

With the birth of a medically complex, disabled, special needs child comes an extra does of love. Not for that child (you love him as much as your other children) but FROM that child. From deep inside his soul.  Love covers you. Love gives you the strength to fight the long fight and year, after year, love stays. You feel love for the homeless-looking man that stops to admire your special gift. You feel love for the countless Dr.s, specialists, therapists and nurses that save and enhance your special child's life. You love the children that lost their battles and the momma's that morn their loss. You love the children in the mist of their battles.You love those you never met that love, encourage and support you on this rocky road. You're in a whole new world. A world that use to terrify you. You continually remind yourself that worry and frustration kill, steal and destroy but love covers a multitude of sins. You will be wronged. Lied to. Sinned against. Not everyone will love your child as much as those who advocate for him. Most won't understand that with the first "second level" sonogram your life changed (for the harder and the better). You got news that shook your entire being...You then had to fight for the sick baby in your belly and pray he defeats the odds. When he was born you become more than a mom. You become a nurse, a fighter, an advocate, a pusher, a Dr., a cheerleader, a secretary and more. When you feel like you're crumbling, like God mistook you for a stronger woman that love envelopes you and gives you strength for the journey. He never promised it would be easy, He promised it would be worth it....