Wednesday, June 24, 2009

Two Steps Forward...

and one step back. Brady and I made a quick trip to Utah over the weekend for my sister's bridal shower and my brother's mission homecoming. It was a wonderful visit full of quality time with both sides of the family. Brady loved playing with his cousins, but for some unknown reason had a seizure during the trip. He had another seizure in the bucket swing at school yesterday morning so there will be no more playing outside until the weather cools down.

I took the seizure counter down for now because I just don't have it in me to watch those numbers climb then fall back to zero again. Brady's Keppra dosage was increased and we also switched back to the brand name drug as we recently started using a generic version thanks to pressure from our favorite insurance company. We are hoping that the drug switch will fix the problem... fingers crossed.

I have been MIA from the blogging world for a bit as I made a goal to stop blogging at work. Today I'm granting myself an exception because I'm grumpy! I hope you all are well and we will be checking in soon!

Wednesday, June 10, 2009

What A Difference A Year Makes

Yesterday Brady reached an incredible milestone that we often wondered if he would ever reach. In the late afternoon Brady hit the year mark for being seizure free. Words cannot describe what a difference this has made in all of our lives. I know we are not out of the woods by any stretch of the imagination, but a break from all of this has been much appreciated. Seizures are very unpredictable and can show their ugly face at any time but for now we are going to enjoy the benefits of living life seizure free. (I wish Brady could write this post himself because I'm sure he would be able to describe in much better detail how much this has changed his life. Those stupid seizures used to wipe him out and I can't imagine the headaches he must have dealt with on a constant basis.) It seems like yesterday that I was feeling the all to familiar range of emotions that would overtake me each and every time I watched him have to endure those 3-4 minute seizures that seemed like an eternity. We are so grateful for family, friends, modern medicine (namely Keppra), thoughts, and prayers that we know have all contributed to to helping Brady stay seizure free for this time period. We celebrated the event with cupcakes and numerous party favors from the movie "Cars"(also a new milestone...interest in a full length movie!!).
It is obvious that Kajsa usually does the posts and has fun pictures and comments to go along with them but she has the camera at work and I am not as creative as she is but I wanted to add one final thing to this post. Yesterday when I was thinking about all of this I went back and found the lyrics to a song that I had written (posted below) when I was having a hard time dealing with the seizures and some of the other challenges of raising a child with special needs. Raising a child with special needs has changed my life in so many ways. It has opened up a whole new world of emotions, questions and answers, setbacks and milestones, but most of all it has given me a life and a world filled with love. An unconditional love that goes both ways and is much deeper than anything I ever thought possible.
We love you Brady.
Congratulations on yet another milestone!

Here are the lyrics to the song:

"No matter the reason"

I have a hard time believing
That things happen for reasons
I just don't agree with what you say
Am I missing something
I must be missing something
There are things about this I would change

I'd change the pain I see within your eyes
I'd leave a peaceful smile
I'd give you strength to sit up
I'd give you strength to eat
I'd stop the charge before it starts
I watch you shake it breaks my heart
I'd calm your precious body
So you can sleep the night away

I have a hard time believing
That things happen for reasons
It just doesn't seem to all make sense
Some say that we're chosen
Why is anyone chosen
I see the kids...their moms...I feel their pain

I'd change the pain I see within your eyes
I'd leave a peaceful smile
I'd stop the tears from falling
When you feel you are to blame
I know how much you love your son
I love him too with life undone
We both could use some peace of mind
So we can sleep the night away

We try and try with doctors, tests, and therapies
We run around and second guess ourselves when we don't see...we don't see

But you see
Now I see
You be you
I'll be me
It's okay
We're alright
And I know
You'll do the best you can
In life
I'm glad I was chosen to be here for you

You want to be a doctor
I won't take that away
You may not frame the paper
But you'll heal me just the same
You want to be a teacher
Then I want that just the same
You may not find the words to say
But you'll teach me everyday
With your love...Your love
With your love...Your love

No matter the reason
You've given my life new meaning
I'm glad I've got you here with me