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, December 30, 2012

Cutest Video...ever.

This is how Case dances. It's SO funny! I don't know why he opens his mouth like that but I think it's the cutest thing EVER!

Sunday, December 23, 2012

I could never count all the ways that you change me, Baby!

The other day I was talking with an old, dear friend I ran into. I referred to the last two years as "my life turning upside down". Then I realized, that maybe our lives turned right side up? I've been through more changes in the past two (ish if you count my pregnancy) years than the whole 26 years of my life prior. It wasn't just Case, Dan's job changed, the kids went to public school from being homeschooled. The way I thought, felt, and saw things changed. Everything just changed. I look back at simple and I don't miss it. Sure it was easier but it was less blessed. I think of all the words I never knew I'd know. The people I'd never imagine I'd meet. I  not only know what PFO, ASD, VSD, IUGR, GERD, Whole Exome Sequencing, GJ and Stenosis of the Foraman Magnum mean but also what they mean for Case. I went form being a mom to being a mom, a nurse, a cheerleader, a fighter, an advocate, a scheduler, a puke catcher, a tube wrapper, a Stoma cleaner, a nurse getter and letter-goer, a charter, a form filler outer and on and on...I became a special needs mom. This is a role I would not have picked but am ever so grateful it picked me! 

When I hold you in my arms, Love
Something changes
It's the strangest feeling
The things that used to matter
They don't matter to me
When I see you
And you're smiling
How my heart aches
So full it is about to break
You make me believe in love

I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you

When I hear you, and you're crying
It resonates, Dear
In a place I didn't know was there
You make me believe in love

I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you

Beautiful baby
You're sweeter than strawberry pie
Just like the morning
Your smile brings the sunshine

I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you

I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you

Friday, December 21, 2012

Dear Case.

Dear Case,

Today you are two. It's been two long years. Two years ago today I was laying in a hospital bed with empty arms while you lay in an incubator in a NICU 7 miles away. It felt like 700 miles were between us but I kept reminding myself that you made it. You were alive, which is more than they predicted. I was scared. I was tired. I ached for you. I was beginning a journey that had a lot of bumps and turns, ups and downs and I had no idea if I was strong enough. Even now, sometimes I wonder if I'm strong enough. Now as I sit here watching you bathe, smiling and bright. Tubes draped over the tube, a port in your belly and scares here and there... I look back at a narrow, tear stained, rocky, pot holed, beautiful, bright, long road. This journey is more than I bargained for but has paid me back ten fold. You've brought out the best in me and though you I'm getting over the worst in me. For every one tear you've brought me one hundred smiles. For every sleepless night I've been given 100 joy filled days. You are my sunshine. My rock. My lesson, my love. You've been though more in two years then most old men. Your tiny body has been cut, stuck, poked, prodded, bruised and bandaged. You still smile. You laugh with intent. You bring joy everywhere you go. You are my hero, my angel. Happy two years, big guy. Thanks for being you. I'll love you forever.

I'll like you for always. As long as I'm living, my baby you'll be.


Thursday, December 13, 2012

It's been a helluva 2 years.

Here I am. 2 years later. Two years after the hell that was Case's pre-birth. It's been two hard years. Two years full of blessings and tears, hope and disappointment. Two long, worth it all years. As Case's birthday approaches I reflect on his life and pre-life. This has been the hardest thing I've ever done. Learning to take "one moment" at a time. Teaching my self not to get caught up on all the "what ifs" and  that it's okay to grieve the "never-will-bes" such as nursing my fourth, cheering him on at a football games, etc, etc. I've learned that things don't go as planed. That crying heals. That not everybody will always understand. I've seen that what I thought would be was overrated. That I need Case as much as he needs me. I realize I wouldn't change him for the world because he is a new-kind-of-perfect. I realized that no mater how many times I go though one of his surgeries, I'll probably always cry whether it be when I walk away from the OR or I hear the complications the surgeon encountered. I've grown. I've become stronger but am cautious of being "too strong". I've made INCREDIBLE friends just because Case is Case. I've learned that moms makes mistakes and pray that in all of the chaos, I won't screw my kids up too much. I've learned that trials in this life ARE His mercies in disguise. It's been a helluva two year and I'm looking forward to many, many more. 

*"Blessings" by Laura story is one of the many songs that is perfect for me, Case and this very special journey.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Monday, December 10, 2012

Going. Going. Going. Gah!

Going. Going. Going. Gah!

Lately it's been just that. I'm going and going and going..Between Case's fever, poop troubles, all of his care and 3 other needy children there's not much rest for momma. At the end of the day I feel totally exhausted. As I lay in bed I let the things that didn't go my way go and thank god for all that I'm blessed with. As I prepare for yet another surgery on my sweet boy's body (this Wednesday) I feel oddly at peace. This is surgery number 5 not including his GJ tube placements or any other procedure he's gone through. No, it's not fair for a not quite two year old to have endured So. Incredibly. Much already. To know pain daily and to live hooked up to tubes. But I think of the Spiderman quote, "With great power comes great responsibility." Case has a God given power to spread joy, open hearts and bring peace without words. He does this and expects nothing in return. He is incredible. A hero. The least I can do is be strong for him and when I feel like my straight is fading I look to a bigger power. The one who knew what he was doing when He made Case Case.

Isaiah 41:10
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

Thursday, December 6, 2012

Sign language and a really cute video...

Case is behind in speech but communicates very well! Today his therapist taught him some signs and he did great! Here he is popping bubbles and "talking" to the therapist! :)

Sunday, December 2, 2012

Cute video!

Case puts the dish towels away for me every time. It's so cute! This is a little dark but worth the watch.:)

These are a few of my least favorite things...

Being a mom of a "less than typical" child in the eyes of the world changes how you look at, well lots of things. For instance, the common fever for Case could and has sent us to the hospital. So, I decided to compose a list of a a few of a special needs mom's least favorite things (from my perspective;)

*Fevers. No, nobody LIKES fevers but for a child with special needs there's so much going on on the inside that a fever could mean a very, serious infection and lots of hospital time.
* The show, "The Baby Story". I used to love that show. Now, it really yanks a nerve. Maybe I'm a little jealous that my birth of my special child was less than typical or I'm annoyed that the stupidest, little complication will send everyone into a frenzy. Either way, it annoys me.
* Watching other children eat at a restaurant. It just hurts my heart a little for my son not to be able to do what most moms (including me with my other children) take for granted. Eating. With out pain or trouble.
* What to expect when you're expecting emails...Gah! I signed up for these before I knew my pregnancy was complicated and for what ever reason (over 2 years later) I'm still getting them. FYI, my toddler should be eating ants on a log, learning to potty train and blow his nose.
* Zipper sleepers. They are so cute and easy to find but allow no room for medical tubes.
* When the doctors office or special clinic mixes things up and the person I normally talk to is "out" so I need to explain EVERYTHING (which takes like 4 days;) about my special boy to a complete stranger.

* Joint hospital rooms (that one is self explanatory)
* My local ER. Yes, I appreciate it but its not my Children's and its less than prepared for my "less than typical" toddler.;)
* My local pharmacy. They annoy me greatly....

Okay, okay. That's more than a few and I'm sure there are a "few" more;) but I thought I'd enlighten you on the things that I think differently about now that I'm a different kind of momma.;)

*Disclaimer: This is just my little rant. I do love being a special momma and wouldn't change my "less than typical" toddler for the WORLD!

So, I've been told.;)