Camp Candlelight Pictures

 Almost four months later and I am finally posting pictures from camp

Arthur had a blast. These are pictures Arthur took and a couple from the foundation

The lake. Yes, they got to go swimming and canoeing

 The bunks in their cabins

 The cubby above Arthur's bed

 Looks like lunch in the mess hall

 Archery

 Horseback riding

 Goofing around

 The pink group!

 Arthur got some great sunset pics!

It was a great experience for him and we are so glad he went

visit the Arizona Epilepsy Foundation Facebook page

for more info and pictures!

Camp Candlelight

This past Sunday we dropped Arthur off at Camp Candlelight.

The camp is run by the Arizona Epilepsy Foundation.

It is located up in the mountains, about halfway to Flagstaff.

Very beautiful and remote.

The camp is staffed with Nurses and Doctors. Many who

specialize in Neurology and epilepsy.

Plus, many volunteers from the Foundation.

I have to admit it was hard to send him.

He will be gone for an entire week

It helps that he has been seizure free for over a year.

But still......

A parent of an epileptic lives with one eye always watching

and one ear always listening

So to not be on constant alert, is weird.

My husband and I both knew that camp would be so good for him.

To break away from us,

to be with other children just like him.

To just get to go to a sleep away camp!

They get to sleep in air conditioned cabins.

The counselor to camper ration is almost 2:1

They get to go rock climbing, canoeing, swimming, archery practice,

 horse back riding. Just to name a few

How many parents would be terrified to let their epileptic do that stuff???

These kids are amazing and deserve this.

I hope you are having a blast buddy! I miss you more than words can say

xoxo

He finally slept!!!

Arthur had to have another

sleep deprived EEG.

He had been complaining of  the "funny feeling."

We tried playing with his meds but it never

seemed to go away completely.

He has so many of those listed, I'm not sure

if it's all seizure related or not.

So off to PCH we went.

It really is a beautiful hospital, inside and out.

This was our first time here since we

moved to Arizona.

In the past Arthur never seemed to be able to fall asleep during the EEG.

No matter how little sleep he got.

We finally went to a hospital that used their brains!! (no pun intended)

The room had no windows and was nice and dark.

At previous facilities there was always a window with light peaking through the

blinds. No exactly the best when trying to get a kid to sleep during the day.

This time, they made him comfortable and the lights went out.

I had a hard time staying awake! But....

He SLEPT.

Which is the whole point of a sleep deprived EEG.

Something about lack of sleep excites the brain of an epileptic.

They said it would be 3-5 days before the 

neurologist got the results from the tech.

My hats off to the people of Phoenix Children's.

They had an area just for sleep deprived EEG's.

With signs warning people it was a quiet zone.  I was very impressed.

We are in this fight together

Found this picture on Instagram.

I think it's a beautiful representation of the fight against epilepsy.

Did I mention tomorrow will be Arthur's 1year anniversary of NO seizures!!!

Still no EEG telling us otherwise,

so were taking the day!

Woo Hoo!!

A big Happy Mother's Day to every Mama out there!!!

Synapses

From the neuro film festival

It makes sense

Epilepsy facts by The Holden Foundation

Click on the title for some good seizure safety information

Just when you think all is ok.......

The "funny feeling"

has

returned

Once epilepsy entered our lives we realized

the "funny feeling" that

Arthur complained about for months leading up to

his first seizure

was in fact.....an aura

Once he started having complex partials and mentioned

the "feeling"

a seizure was coming

Well lets fast forward................to today

Arthur started to complain of it over a month ago.

But there was no seizures

Just the "feeling"

I tried not to worry, he had recently started  Strattera.

Maybe it was that?

I called the neuro and she wanted to try and decrease the Strattera

dose a tad.

Down to 60mg from 80mg. Give it at least a week

A week or so later.......

Arthur said his stomach wasn't as upset as before

But....

he kept getting the "funny feeling"

Great....

So I call the neurologist again.....

She says----

" It's sounds like his meds are working but barely hanging on, hence why

he is starting to get the 'funny feeling' again "

He will seizure free for 1 YEAR in May...... 1YEAR

and now

1 month before he hits that mark

IT

RETURNS?!?!

I am trying sooooooo hard to not let it worry me.

But my heart is hanging by a thread before it lives in my stomach

So the Doc increased his Zonsimide by 50mg.

Another pill

My poor kid

No kid should have this

Hopefully all he needed was a little medication increase.

But I'm worried the E beast will
never go away.
That the meds just keep it dormant
That he will never "outgrow" this