As of today.....

As of  today......

He has been on the Zonegran for 10days. So far the only side effect we 

have noticed is he has been extra tired.

We can deal with that and I know that's a side effect that should

subside.

I was very hesitant to start the Zonegran. But I guess we should at least

give it try. Right?

Arthur has been seizure free for 3weeks Friday ( knock on wood)

I am always hesitant to applaud that.

It always seems that as soon as those words leave my mouth....

'he's been seizure free for.......'

He has another one the next day.

I'm sure many parents can relate

He had his two for May

He usually has two seizures every month. So I don't give the Zonegran any props

until we go a good 30-60days seizure free

Here's to positive thoughts

The song our children sing

I always amazed at my son's strength. I hear this song and see it going 

through his head.

Our kids deal with so much.

 To have a condition, that

you can't control or stop.

 To know you may never

truly stop it. 

The strength. 

It comes from some where truly special. Somewhere deep inside them.

I know my son has guardian angels

I know he has someone who watches over him and gives him strength.

Having faith while dealing with this can be hard.

But we can't lose it, cause HE is always with us

I may not always understand

I may scream

"WHY MY CHILD!?!?"

But I can't lose faith...... I just can't

To all the families out there dealing with the demon epilepsy is.....

Do not lose faith.....

Do not let it destroy you

or your family

It sucks

But it does not define any of us

Especially our children

Do not let if define who they are

No news is good news???

So after a week in the hospital. A 7 day EEG, PET scan, and MRI.

 All the scans looked normal. They found nothing. Nothing new that is going to help.

Did you find anything from all this??? Yes, there is no tumor or growth. No visible brain damage.

Which is good news.

But it doesn't help get rid of this MONSTER!!! The neurologist said,

'the abnormal activity is coming from the left temporal area"

.But, we already knew that!!!

So there is nothing they can just cut out of his brain. Which on one hand I'm glad, because the

thought of someone cutting open my kids head and removing a piece, freaks me out a tad.

AAAAAAHHHHHH!!!

That also means we have no "cause," nothing to blame this on.

I also know, from all my google "research." That most brain tumors or growths found r/t epilepsy

are benign. Once those are removed  the seizures decrease a lot if not stopping them all together.

At least that's what I read.

So now what???? What the hell do we do now????

The neuro said lets just try adding on the Zonegran. 

From my earlier post, I made it clear I had BIG reservations

about this drug. She said to just give it a shot. If I notice anything I don't like we can stop it.

Great...

So we did start it a couple days ago and so far so good.

But.... I HATE THIS!!!!

My husband and I are beside ourselves. As parents you want to fix this, make it go away.

And we can't.

Where's the line? We want the seizures to stop for him. Be able to have a normal life.

But then what if in that quest, Arthur is over medicated and has no

quality of life?

Is a couple complex-partials seizures a month better then being over medicated and

taking a risk with all the side effects the meds can cause? Things have been worse, the

seizures have been worse ( grand mal) and more often. So the meds

are doing something. Just not enough to stop the seizures all together.

We are so at a loss of what to do. We want to do the best for him. All parents

of epileptics, us including, live with heavy hearts,

And you know what???

IT REALLY, REALLY SUCKS!!

Will the seizures ever stop?
 Could he grow out of them?
Am I doing the best I can for him?

 Should I switch docs again?

Will he ever drive a car?

Will he ever be able to keep a job?

Will he ever be able to live alone?

Will he ever be able to live the life he dreams of?

Its not fair.

Epilepsy Awareness by Epilepsy Parents

Great video from 

Epilepsy Parents ( I found them on Facebook)

Enjoy

Chances

Feeling a little emotional today

and

this song just hit home so I thought

I would share it with you all

Just plain exhausted, but finally HOME

Arthur got discharged this past Thursday. The Neuro team asked how we were doing and I said,

" We would really like to go home."

They talked about needing more seizures on EEG for pre-surgical testing, but since I wasn't seriously

entertaining the idea of surgery if was fair to ask to go home.

So he had a fancy MRI done and we were out by 6pm.

It was SO nice to be home. Got one evening with the family and the next day was

a field trip and back to work at the hospital for three straight nights. UGH

Lets just say I have not caught up on my sleep AT ALL

Hospitalizations and the worry and fear that come with them, drain everything out of you.

I spoke with Arthur's neurologist via email on Friday and she said

all the neurologists, neurosurgery, etc meet on Mondays.

The go over all tests results and decide on a plan.

Then she will call me on Monday.

They still have to fuse his MRI to his PET scan, which I looked up and it's a pretty cool thing. You

really can see so much more detail that way.

So for now Arthur is back on the same meds at the same dose. We patiently wait till Monday for the results of our "week  get-away" at the hospital.

AND

Yup, you guessed it. NO SEIZURES

Life in the hospital....

Hospital Adventures

 My luxurious bed for 5 of the 7 nights

 Even the call light/remote got a mustache :)

 Not gona get out of homework

The rock star at PET scan

~~~~~~

This is a picture I took with the Ipad

This is why I barely slept most nights.

I don't know exactly what to watch for, not like it matters.

Being able to watch this 24hrs a day for 7days was....

good and bad

It was a long stay, but we tried to make the best of it