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.

Wednesday, January 30, 2013

Just Enjoy the Show...

Ready, set...stop thinking!

I've been told I think too much several times, by several people. I'll play scenarios over and over in my head before they even happen. Maybe it's because I've got a lot going on... Selling a house, buying a house, Case, endless paper work, three other kids..etc., etc. Maybe it gives me the illusion that I have control of this crazy life of ours. I don't know why I do it but I know that it will surely kill me or send me to an insane asylum. This past month I've been determined to think less and pray more. To step back and "just enjoy the show." Sure, I can't just "give up" or stop caring for Case, the girls..etc. but I can and am (more and more) letting go of the millions of things that I have no control over.  When the thoughts take over and I feel helpless it's important to give them up. Out loud even, I surrender them to the One that "directs the show". Sometimes, I want my money back (lol) and think, "this is more than I bargained for!" but this is the life that was chosen for me and all I can do is go with the flow...(if need be) I'll know when to make a ripple but It's time to stop to over thinking and under trusting. I choose to give thanks in ALL circumstances for this is His will. Worry, anxiety, the need to control uncontrollable circumstances is a lack of trust. When I'm feeling that way, it's time to readjust my focus to the one who made me me and Case Case. For He knows the plans for us and they are good. He sees the big picture and has gone before me. It's time to just enjoy the show!

"I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I don't know where to go I can't do it alone I've tried
And I don't know why

I'm just a little girl lost in the moment
I'm so scared but I don't show it
I can't figure it out
It's bringing me down I know
I've got to let it goAnd just enjoy the show

Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.-1st Thssalonians 5:18

Deuteronomy 31:8

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

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

Monday, January 7, 2013

...but it brings blessings bigger than my wildest dreams.

Living this life is something I never dreamed of doing but it brings blessings bigger than my wildest dreams....

The days are long. The tasks are endless but the reward is priceless. Yes. I'm talking about the best job in the world. A parent of a Special Needs Child.. Read these lyrics and listen to this song. You will be blessed. 

She's up at six a.m. to dress and feed him
She helps him from the wheelchair to the van
And drives the fifty miles to his appointment
And the next day she will do it all again
I asked her how she does it everyday
How do you keep on going with such grace?

And she said, "When those eyes are looking up at mine
Every trial, every fear in that moment disappears
And you realize that it's all worthwhile
When it's your child."

They haven't slept since 2007
Since the doctor placed that baby in their arms
Daddy's working days and nights and on the weekends
And you wonder how it's weighing on his heart
I asked him how he does it everyday
How do you keep on going with such faith?

And he said, "When those eyes are looking up at mine
Every trial, every fear in that moment disappears
And you realize that it's all worthwhile
When it's your child."

Wednesday, January 2, 2013

Half-Brained Thoughts from a Special Needs Momma.

Top ten thing's I've seriously considered doing when I'm low on sleep and patience.

10. Throwing Case's feeding pump out the window. Really. Some days that thing must beep hundreds of
times. He's carrying it around constantly. It beeps when it's empty. It beeps when the tubes twist, kink or clog. It's an annoying, beautiful, life giving machine that I have a love-hate relationship with.

9.  Just driving. And driving. And driving. Alone. With the music blasting. I'd come back eventually but only once I'm well rested with a manicure.

8. Taking the 10+ (front and back) partially filled out papers asking me if my son is "still medically complex and if so to prove it", crumpling them up and leaving them on the doorstep of the office with his bottles of meds, tubes, pump, syringes, all his medical records and maybe some vomit with a note that reads, "Yes, he is still very much the same as he was the last time I did paper work to prove it".

7. Drinking a whole bottle of NyQuil and sleeping for a week.

6. Eating chocolate. All day long. Lots of it. Nothing else except maybe coffee. Make that a week. I'd like to eat pounds and pounds and pounds of chocolate while sitting in a hot bubble bath. No phone calls, no paper work, beeping pumps or vomiting 2 year olds just Mark Hoppus and Jason Mraz playing on repeat....

5. Going to the mall and cutting holes in half the zipper sleepers and leaving a note, "I made your sleepers feeding tube friendly. You're welcome."

4. Kissing all the tubed, trached and wheelchair bound babies/kids I see and telling them they are beautiful, important a blessing and I love them.

3. Putting a sign on my door that reads, "If you're selling me something, handing me a tract or asking for donations, don't knock. Just go away. I don't have money. I have Jesus and I only donate to sick children related charities".

2. Every time "Sally" from my son's health insurance's "Special Needs Department" calls to tell me she "Knows how I feel and is there to help but can't help get any benefits back for him that have been taken away." I seriously consider saying, "Yeah, 'Sally'? I don't believe you. Really, stop calling me."

1. Kidnapping a nurse who has OCD, a cleaning addiction and a love for paperwork and making her my personal assistant, forever and for free.

"Let's just go back to sleep and start this day over."