Auditory Brainstem implant.... Dec. 11th!

Got a call from Dr. Backous's team today.

Auditory Brain stem Implant surgery....tentatively Dec. 11th.

Should be firmed up by the end of the week.

It could be canceled if the insurance decides not to approve.

 

 

There will be a team of three Neurosurgeon's

Dr. Backous

Dr. Mayberg

Marc S. Schwartz, M.D. who is flying up from L.A.

 

 

Click here: for more info regarding ABI's and how they work.

 

The link above takes you to a page from

the "House" clinic in Los Angeles.

 

 

We have been having a rough time with migraines

associated with the initial craniotomy surgery back in April.

 

We added a new doctor... a neurologist.

He gave us new medicine, we got that regulated and went

6 days without a migraine.

Then he wrestled a little with his brother and...

You guessed it Migraine.

 

He also got new medicine for the actual migraine and it

helps alot. Brings his pain level down from a 7 to a 5 in 15 min.

It's AWESOME!

Sucky day....

I will update with pictures soon but...

We withdrew Chad from school today.

He just can't do it. His head hurts so bad

he can't go to school.

That was DEPRESSING!

 

Then we went to see his ENT who had placed a call

to his doctor in Seattle. They have decided that the

Cochlear implant is not going to work.

 

The next step is an ABI Auditory Brain stem Implant.

It is similar looking on the outside to a CI.

It bypasses the cochlea all together and goes

straight to the brain stem.

 

 

His doctor had mentioned that was the next step.

I thought it could be done at any time or at least at a

later date. It can't. :(

If you don't use the stuff in the brain for what it is supposed

to be used for then the brain uses it somewhere else.

 

You have to place a Cochlear Implant or an ABI

within the first 12 months of the tumor removal surgery

or the brain will start taking the nerves etc.

 

We hit six months today.

The longer you wait the less chance of success.

ABI takes a month to be approved by Insurance, and

the Cochlear Company.

 

So... we have to decide very soon.

I mean... Chad has to decide very soon,

really within the next two weeks if he wants to

have surgery A G A I N. :(

 

Recovery from brain surgery is sooooooooo

SOOOOOO  SO SO SO SO BAD!

 

Besides... He was still having pain from

the other two surgeries, that's why we withdrew him.

 

FYI ABI gives you only sound awareness. Not

word recognition.

 

THIS IS A TOUGH DECISION.

IT IS A SUCKY DAY!

 



Grateful for this blog today...

I was scrolling through these pictures and blog posts.

Many I am so grateful I have done this.

There is NO WAY I could explain what has happened in my life with

out all this! Thank you also to my friend Patsy for introducing

me to blogging many years ago. 

Awesome Cheney sunset after a very dusty extremely windy day.

 

So Blake turned 16 this past Sunday.

This was his cake. It was awesome.

 

White Chocolate Frito m&m popcorn. :)

The friends at his party!

 My parents came for a visit and they camped

at Riverside campground in Spokane.

They took us to this cool bridge.

Then the boys went for a walk...

 

And a climb (you can see the two dots at the top?

Hmmmm it's been 4 1/2 months since brain surgery.

I wonder if he's steady enough to climb up there?

 So here he is shimmying back across the looks to be

very unsteady tree. UGH Boys. I told my mom...

if we don't look then they will come back faster.

She gave up and went to the car :)

 Things are going well here. The boys are meeting lots of new people.

People here are very friendly. We are happy for the change.

Moving on to week five and life lessons...

Well... Chad is ready to get a job... at least start looking into

getting a job. This is a difficult task when you can't hear.

 

So we have been directed to the Division of Vocational Rehabilitation.

 

We went to the orientation today... It was held at the Worksource

 office. I went there last week and verified that they had the

 equipment for those hard of hearing. They should have...

I have spent two weeks in their classes and they announce

 in every class they have this equipment and to just

 ask at the front desk.

 

So... I went the front desk "sure we have that".

I mention to Chad/Eric we should arrive early

so we can make sure this stuff is set up and works.

 

We arrive 30 minutes early to get the equipment set up.

They had to look for it...

Then they asked me if I knew what they were looking for...

Then they asked me how it worked....

Then we took all the stuff to the room where the orientation was...

The person conducting the orientation didn't know how to use it...

It seemed that their "team" who did know how to use it was gone that day.

 

It turned out that we were the only ones who would be attending the orientation

so Chad could hear and the video was close captioned.

 

 

I went back to the front desk and said ...

Chad will be back here in the morning to attend another meeting

could they figure out how it worked before then?

Sure.... They spent another 3 hours looking it up,

asking me questions, replacing batteries etc.

 

Guess what... you have to have a hearing aid for this thing to work.

 

We don't have one.

 

It was a very good lesson for me and the people at Worksource.

I wanted to cry...

Chad won't be attending tomorrow's meeting.



3 weeks in Cheney...

We have been in Cheney for 3 weeks and we have had a good time!

We have also had visitors.

Cody came to see us before he headed back to Texas.

He picked up Chad and took him to Texas with him!

Chad was gone for 2 weeks and had a good time with his friend.

Chloe came, we bought her a blow up dinosaur so she would

get into the water. She never put more than her piggie toes in the water.

 Curious about her personality...

Here is is, she is a silly girl!

She was hugging grandpa before she left.

And our third visitors were the Roches...

Friends since forever!

 This is Sian and Blake

they went to a camp together this summer called EFY.

(Especially for Utah).

This is the Roche family with Eric and Blake.

So we have had visitors every week!

We love them keep coming!

Moving Sucks!

Moving is so painful, frustrating, annoying experience

and would be made worse with out the help of so many

wonderful people.

I only got pictures of a few of the many

volunteers but I am SO VERY Thankful to them all!

This is it... Empty :(

Our moving convoy...

Truck pulling VW, My truck pulling another VW.

Here we are on our way.

We spent the night at my moms after getting there after 9 pm.

Woke up early and went to Swedish for a few

doctor appointments before leaving town.

This is the last picture.

We made it to Cheney about 5 pm.

and finished unloading close to 10 pm, totally exhausted!

Again thanks to some awesome volunteers whom I have never met before!