Tuesday, September 28, 2010

Oh Happy Day!!!! On a more positive note :)

EEG results....WITHIN NORMAL RANGE =) woo hooo!!! Of course, they reminded me that this was just the short test..but guess what I . don't. care. We will deal with that aspect later, if there are any continuing problems. Anyways that is my super happy fun hallelujah post..Now off to yell at the hooligans and fix supper. Grandma's mac and cheese of course lol

Surgery Update.

The surgeon called last night and said that C-1 is slipping in Adam's spine so we have to do an MRI as soon as possible, hopefully this week but probably next week, to see how bad. He is out of town next week so our appt to see him probably won't be until the 2nd week in October, unless they can get him in tomorrow. He stated Adams' condition as not critical but definitely serious. He's not going to rush into surgery but not going to drag his feet either. He's hoping that there isn't any damage being done to his spinal cord. Hopefully he can get this fixed before that happens, or the MRI will show that it won't hurt his spinal cord, those are the two good options. He's talking more along the surgery lines now than he has in the past. Adams is still on restrictions physically. I really didn't want him to have to go through surgery right now but at this point I feel like if they can help him have a better life then I'm all for it. Not being able to run and play or even wrestle around with his little brother is no life for a 7 year old boy. Not to mention we hold our breath every time he falls. Anyway....more tests...more waiting. The story of our lives.

Saturday, September 25, 2010

Tim McGraw - Live Like You Were Dying - HQ (Official)


This is probably the one post I've never wanted to post. Adams symptoms from the skull, cervical spine issues are progressing. They did x-rays on Friday to see if his neck is stable. It is not. The neurosurgeon was hoping that the calcium deposit that he has in his neck would be enough stability to buy him some time to hopefully grow and not have to have surgery for a while, if at all. I guess hope wasn't enough. We left the doctor's office yesterday afternoon without an answer as to what he's going to do. He is going to talk to the radiologist at some point over the weekend and call me by Monday. I was told to have my cell phone on me at all times to receive his call. He will decide one of two things.....either to do surgery now or not. This will depend on the how severe the instability of  his neck is. If it's not too bad he'll probably repeat the scans and revisit the surgery option in a couple of months. If he needs the surgery now he'll do it. The only other way he won't do surgery is the worst case scenario....and I'm not even going to talk about that. I told him that I'm at the point where something needs to be done to help my son and he agreed...he just has to see from the radiologist if its worth putting Adam through. Not quite sure what he meant by that but I think he was talking about if its not too bad from a radiological standpoint. No news on the EEG yet either. Anyway this is our update, we're spending the weekend relaxing from home and trying to have a no tears, no drama weekend for Adam. Thank you for your thoughts and prayers......we appreciate everything so much.

Thursday, September 23, 2010


 I've written this blog several times and erased it. I don't want to be negative...Friday.....tomorrow. Ugh. No matter what the outcome tomorrow, I'm going to feel like my heart has been ripped out all day. Sad thing is, I'm getting used to that feeling.

Saturday, September 18, 2010

While I'm waiting

EEG was yesterday. 5 business days until we find out the wasn't bad , really. Adam was, as always, SUCH a trooper! We kept him up until 12 last night and woke up at 6 this morning because they wanted him to be tired so he could sleep through part of the test. Anyway....with an EEG they put this abrasive cleanser on your head in the spots that the mark for the electrodes, then conductive cream, electrodes, and tape. Adam layed through all that with NO problem.....At one point he reached his hand out to me so I took it and held it. I smiled at him and he smiled back, then said "You're ok mom. You're ok." I choked back the tears and told him yes I'm ok. He has this way of giving me a look or saying something to me when my heart  is breaking. I try very hard not to look or act worried in front of him but I guess I'm not so great at it.  He was so great. I love that little boy with every bit of heart I've got and then some. I worry sometimes that the other kids feel like they aren't as loved, or don't get as much attention as they should. Its a very hard balance having a special needs child when you have other children. It takes SO much time and effort that frankly we're exhausted. I hope there are no seizures on the test...but at the same time if there aren't then something else is going on. So long story we wait. and pray.

While I'm Waiting - John Waller

Thursday, September 9, 2010

EEG's and fear.

Next Friday. 9 am. Why, oh why, oh WHY does this terrify me? It won't hurt him, we wont be staying in the hospital, just there a couple of hours. But. I hate the word "but"....we hear it too often. Same thing with the world "complicated" .... ugh. Ever since our appointment with the neurosurgeon then the developmental pediatrician I have been in a constant state of heart attack. I spend lots of time with my sunglasses on....basically keep the radio off in the van, most of the songs that I like now make me cry....and sit here watching tv....sometimes I write blogs then delete them because WOW I am a crazy, emotional, irrational person lately! It boils down to this....fear. All I want is for my children to out live me. We've already lost a baby. That was the most helpless, horrible....lonely part of my life. And I never even held that child! I don't even want to imagine what its like to bury a child.... This "stuff" that Adam goes through forces us to. I guess its the fear of the unknown. Or maybe the fear of the known. Probably just fear.  I believe in God. I trust God. I love God. But. ...... I wish I could be like that blue eyed string bean of a boy. He walks into these hospitals and doctors offices with a smile on his face, and no matter what the news is, he walks out of those hospitals and doctors offices with a smile....He is the picture of strength. THAT is why he's my super hero.....

Wednesday, September 8, 2010

Martina McBride - God's Will

Selah - I Will Carry You (Audrey's Song)

Uncle Kracker - Smile

Adam's song....Ok well its by Uncle Kracker... "Smile"

You're better then the best

I´m lucky just to linger in your life
Cooler then the flip side of my pillow that´s right
Completely unaware
Nothing can compare to where you send me
Lets me know that it´s ok yeah it´s ok
And the moments when my good times start to fade

You make me smile like the sun
Fall out of bed
Sing like a bird
Dizzy in my head
Spin like a record
Crazy on a Sunday night
You make me dance like a fool
Forget how to breathe
Shine like gold
Buzz like a bee
Just the thought of you can drive me wild
Ohh you make me smile

Even when you´re gone
Somehow you come along
Just like a flower poking through the sidewalk crack and just like that
You steal away the rain and just like that

You make me smile like the sun
Fall out of
bed sing like bird
Dizzy in my head spin like a record
Crazy on a Sunday night
You make me dance like a fool
Forget how to breathe
Shine like gold
buzz like a bee
Just the thought of you can drive me wild
Ohh you make me smile

Don´t know how I lived without you
Cuz everytime that I get around you
I see the best of me inside your eyes
You make me smile
You make me dance like a fool
Forget how to breathe
Shine like gold
buzz like a bee
Just the thought of you can drive me wild

You make me smile like the sun
Fall out of bed
sing like bird
Dizzy in my head
spin like a record
Crazy on a Sunday night
You make me dance like a fool
Forget how to breathe
Shine like gold
buzz like a bee
Just the thought of you can drive me wild
Ohh you make me smile
Ohh you make me smile
Ohh you make me smile

Just pray.

Bad case of the what-ifs.....anything you can think what if about has been thought of already. Nothing different or any worse going on...just normal every day stuff for us. Just pray.

Friday, September 3, 2010

I'm going on a journey

I Am Going On A Journey

I am going on a journey,
Won't you come along?
I need someone to help me.
A person big and strong.

I'm walking on my journey
But my feet are very small.
Can you stand beside me,
And catch me if I fall?

At times when I can't keep up
With life and all its fears,
Can you put me on your shoulders
And wipe away the tears?

When the steps I take are not big enough
And it's hard for me to grow
I know I can depend on you
To let me take it slow.

I'm going on a journey,
Please, won't you walk with me?
I need someone who understands
The place where I should be.

I promise when the road is tough
And you want to turn back home.
I will hold your hand real tight,
So you won't feel so alone.

I'm going on a journey
I don't know where it ends,
But if we walk together,
We can always be best friends.

And when the journey's over
And we find where we should be.
I know that you will be so glad,
You took this path with me.

I'm going on a journey,
Please, won't you come along?
I need someone to guide me
A parent—big & strong.

Written by Sally Meyer

Blessed are those.

Blessed Are Those

I. Blessed are those who stop and listen to my chatter. You may not understand me; but I love when people talk to me, for I long for companionship, too.

II. Blessed are those who take my hand and walk with me when the path is rough, for I easily stumble and grow weary. But thank you, too, for letting me walk alone when the path is smooth, for I must learn independence.

III. Blessed are those who take the time to tell me about special happenings, for unless you make special effort to inform me, I remain ignorant.

IV. Blessed are those who wait for me. I may be slow, but I appreciate your patience.

V. Blessed are those who are not ashamed to be seen in public with me, for I did not choose to be born thus. It could have been you as well.

VI. Blessed are those who do not pity me, for I don't want pity. All I want is understanding and respect for what I have learned as well.

VII. Blessed are those who notice my accomplishments, small as they may seem to you. I must work long and hard to learn many of the things you take for granted.

VIII. Blessed are those who include me in their games, even though I may not understand the rules, I still like to be included in your activities.

IX. Blessed are those who think of me as a person who loves, and hurts, and feels joy and pain just like you do, for in that respect I am normal.

Author Unknown

Looooonnnng Update

Hello friends! Lots has been going on lately. We bought our first house (yay!!), new van (yay yay!) and Adam is going to a small private school (thanks to special needs scholarship) and Harold and Emily are homeschooling (triple yay!!) Since the last blog Adams has been diagnosed with mild Cerebral Palsy. bleh. What is this 8? or 9 different "conditions"? We had another MRI due to back pain and it showed slight pinching, a mass in A's skull and more deformed vertebrae. Had to wait 3 months for a CT scan to check "progression". SO glad we have a good neuro-surgeon!! The CT scan was...well...revealing. I wish I could say he is healed. Life as we know it has changed for the better, and my child has become "whole". But. NO. God seems to tell me no....a lot. I'm not mad. I don't hate him. I just flat out do.not.understand. Adams' spinal cord isn't being pinched. The bottom part of his skull is slanted forward, towards his face. That's part of the mass in his skull, for some reason his body figured he needed more of 'something' back there. It also means that the hole that holds the "connections" between the brain and spinal cord is compromised. The cord is resting on his skull. Fun stuff. I'm no brain surgeon but that can't be good. What makes it even scarier is that the front of the vertebrae (i think it's C-1) is just a calcium depost. Not quite bone. and only one small spot. TRUST ME- it is NEVER good to see a SURGEON who you think has GOT to have seen it all...deflate. He let out the biggest sigh while he was on the phone with whoever was reading the CT scan. About the 3rd "this is a difficult case..and yes, i understand" coming from his mouth to whoever was on the other end, let me tell you .... I wanted to snatch my baby up and run....get in the van and leave....never ever go back. I don't know if it was strength or fear that made me sit in that chair. I had to sit through the decision making. No surgery, not because he doesn't need it. But because he's difficult. He's young. Hopefully the calcium will turn to bone, and fuse with the bone under it. Back in 6 months for X-rays. 50% chance of major, major, did he mention how major this surgery was enough? surgery....any time we go he may say its time. He won't do it until its absolutely necessary because he basically has 1 shot to get it right. Adam has 1 chance to heal right. Until then, no football (like my kid with autism, cp, xxy, and severe hearing loss is going to be playing football anyway!) , any contact (or potentially contact) sports and absolutely nothing that can put pressure on his spine....THAT is a tall order! SO SO SO SO SO glad we got enough donations to buy his car seat....We are ETERNALLY grateful to our friends and family for this. Now we get to be scared to death until Feb. Pray pray pray that this turns to bone and fuses naturally....Pray that we get enough donations to order his service dog....just pray. I need to find the joy that we had almost 8 years ago. I'm tired of the tears, I'm tired of the fear....I'm just tired tonight.... I'm going to add some poems and stuff that's getting me through this time.


One night a man had a dream. He dreamed He was walking along the beach with the LORD. Across the sky flashed scenes from His life. For each scene He noticed two sets of footprints in the sand. One belonging to Him and the other to the LORD.

When the last scene of His life flashed before Him, he looked back at the footprints in the sand. He noticed that many times along the path of His life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times of His life.

This really bothered Him and He questioned the LORD about it. LORD you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life there is only one set of footprints. I don't understand why when I needed you most you would leave me.

The LORD replied, my precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you. ~unknown

The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.
Horace Bushnell