End of 2012 Thanks goodness!

Well.... We have made it to the end of 2012.

 

It has been a very rough year for us...
(just start reading from Jan 2012)

You will see that we have been through a lot
and are ready for it to END!

 

a couple pictures from Nov & Dec ...

Thanksgiving with Amy, Chloe and Shavik

Our whole family

The girls

Blake wins!

Chelsey and her co-worker Janessa

Chad with his buddies... Tyler & Cheri 

This poor kid has been through HELL this year!

 

Ice on the swollen eye really helped but... GEEZ 2 DAYS SOLID!

Christmas eve.... we live where it snows A LOT!



We had a set back, but we are back on track... or we changed the track?

 

So things were going well until Chad said @ 6 am Sunday morning.

I think I am leaking brain fluid.

 

 

It seemed that indeed he was and the Dr. had us

do a test. Put some ointment on it and if

it was leaking it would bubble.

 

Sure enough it was bubbling. So we packed up our clothes

for the week and left for Seattle. We were supposed to go

to Seattle Wednesday anyway so they could turn the ABI on, on

Thursday and Friday.

 

So... off we went. Over the pass which was a snowy

night mare. We were told they closed it about an hour

after we crossed it because it was so crazy.

 

Got to the hospital where the Dr. met us and

admitted him. They needed to put in more stitches

and could not use any anesthetic because if things were coming

out then they could also go in, and cause infection.

It was extremely painful. Then they put in an IV, took blood,

gave him eye drops, and eventually a sleeping pill, he had a nightmare,

that scared him and he clenched his teeth so hard

it caused him a migraine, so they gave him something for that and

then he was so freaked out he could not sleep for a while.

 

It was a very bad night.

 

We are home now... 2 days later.

They are going to wait 3 more weeks to turn it on.

 

Hopefully he will heal quickly. He is having a very rough time.



Had a good night!

Chad had a good night, (he might not agree)

He wants to sleep all through the night.

He is improving using less IV drugs gets him closer to home

Getting up out of bed is good for him but he is not fond of it.

 

His head is swollen today. They may or may not

take off the dressing today. He is not eating much at all.

 

 

He complains less that the last surgery, he was very

ready to go home last time. Now he is just enduring.

 

On to another day @ Swedish. :)

It's done! ABI installed and tested well :)

Hi all,

We are in the hospital here @ Swedish.

Chad got out of the ICU at about 1 pm this afternoon.

 

He is doing well.

His Dr. wants him up and about.

More time in the Chair than in the bed.

He hurts alot .

They took the cochlea out and the Cochlear implant out.

 

Taking the cochlea out left a gap in his head.

So they took some fat from his stomach

and put it in his head. He thought

that they should take some from his butt so he could literally be a "Butthead".

 

He also had a question "If you are what you eat then I am drugs,

If I am drugs why don't I have alot of girlfriends who are

already addicted to me?"

 

So his sense of humor is not absent through this.

 

That is my update. Have a nice weekend!

ABI surgery tomorrow Dec. 7th!

Hi all readers...

I apologize for not updating sooner, however I have been very busy.

The surgery was moved from the 11th to the 7th.

Which is tomorrow. (eek!)

 

We met with some of the surgical team last week

for our pre-op appointment and learned some

scary stuff. I will tell you about it after it's over.

 

This surgery has never been done at the hospital

we are going to. Swedish Cherry Hill campus.

 

Dr. Backous, Dr. Mayberg are the brain surgeons performing

this surgery and they have never done it before. (no stress here!)

 

However they are flying Dr. Marc Schwartz

from the house clinic in L.A. to assist or

teach is a better term to use.

 

The Cochlear America is sending people.

 

Needless to say the cold Chad has had for the past 4 weeks,

has been causing stress the last few days.

They don't want him to cough after surgery.

Apparently you can leak spinal fluid if you cough.

 

So... We are packing up and heading in out in a few minutes

to drive over there.

 

We are nervous! Wish us luck, or prayers on Chad's behalf would

be greatly appreciated!

 

I will update Friday or Saturday!

 



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!



Last night in PA!

Well it's officially here...

Our last night living in Port Angeles.

I needed to take some pictures of my kids

before I left because they are so dang cute.

Ok I love this girl! I can't even begin to

explain to you how much! Tonight she said

"Grandma you have chocolate? I said no, She said "I love chocolate".

now I know it's official she's mine! I love chocolate too!

 I know you think I only have four kids...

The reality is here in this picture.

Marty, Cody, and Chelsey's best friend Chelsea are also my kids.

 I love this one...

They turned out great! (The kids and the pictures).

Tomorrow starts a new adventure we are excited for!

Stay tuned for updates!



7 in 7...

Officially I am moving in 7 days.  : I

But technically I am moving everyday.

Tuesday it was a large load to the Goodwill.

Wednesday it was the Piano

Today (Thursday) it was the log bed to Amy's.

Friday it's a Large load of extra VW parts.

Saturday Eric's Mustang is moving to it's new owner.

(See photo below)

Yes that is Chad moving (kindof) a piano.

He ends up suffering from these kinds of actions but

He likes to feel helpful so we argue over it. Guess who wins?

 

This is Chelsey & Chloe :)

(spy the unpainted VW in the garage).

This is what my house has looked like for about

3 weeks. (Moving UGH!)

7 in 7... 7 hrs away in 7 days from now.

Yes we are moving in 7 days.

How is is possible that these cars will be functioning

in 7 days? I believe it will be a miracle :) 

The extra parts we are selling at the

VW show this weekend are left overs from these two cars.

 The blue convertible on the left is

Eric's car. The green car on the right

is Chad's car.

Were moving ...

I am sorry that we (I) have not been posting much.

My life is pretty chaotic right now and I get a little

overwhelmed.

We are moving in two weeks and two days!

Eric lost his job, his last day was May 24th.

We sold our house, it was a short sale so we get to leave with bad credit.

Eric was accepted at Eastern WA University  and starts this fall.

I have to say it has been one hell of a year!

In the last year we have both lost our jobs,

Had fibroid and brain tumors,

Sold our house, we have to move.

Had 6 hospital visits.

And other heart breaking things I won't blog

about to protect my children's privacy.

So you can see... I am trying to keep my head above water!

We went to Spokane (Cheney) this weekend to find a home.

We have applied to rent a place but have not heard back yet.

We also took a load of stuff and took Blake to wrestling camp.

On our way to Spokane we went back to Swedish Hospital to see

the Audiologist to check up on the Cochlear implant.

Still nothing...

The audiologist wants him to wear it even though he can't hear

 anything because it burns off bubbles in his brain from the surgery.

They are hoping he will hear eventually.

I can't believe how quickly SO MANY things can change.

  

:( It's not working....

  I wanted to take a picture today of Chad with his

Cochlear Implant transmitter on and working.

However that was not to be...

Chad could hear nothing.

Two weeks ago when he had the surgery to install

the implant we waited and waited and waited.

It was very stressful so when the doctor finally showed up

he said "what normally takes 45 seconds took 45 minutes.

There was so much inflammation that if we would have waited

it probably would not have happened at all."

Today they did all the testing and Chad had no response at all.

The audiologist said it's possible that as the inflammation

goes down he might start to hear.

So we are hoping for that is the case for Chad.

 

Brain surgery is not for wimps...

What do you do the night before brain surgery?

Go to the Outback and eat what ever you want.

This is just before... he's looking at the screen,

I wanted one last picture of his head.

After five painful, grueling hours

 we came here.....

This what it looks like the day after

 you get a tumor removed...

his head was soooo swollen I was scared...

however it was almost gone

 2 days later (Thank goodness).

Spent alot of time with the barf bucket.

He had huge problems with

balance, disorientation, nausea. 

Blake thought Chad was having fun....

so he decided to get Intussusception.

Don't know what that is?

Look it up...

 Poor kid, Intusseption is very painful.

He spent one night in the hospital but came

home to a strict diet.

                              
                               Back to Chad...
                               This is what his head/scar looks like...


  still in the hospital                                  10 days later
  2 days after surgery.                               Stitches come out.
                                                                                                                             

This is 7 weeks post surgery,

the day of CI surgery.

Here's the same smiley kid (with mom & dad)

 Here is that kid the same day....

 7 weeks after brain surgery he got

Cochlear implant surgery.

I walked into the recovery room and saw

a suit case on the floor. I said "Did some one

leave this behind?" They said "No it's yours".

It was $150K worth of

Cochlear Implant processor and

accessories, etc. (YIKES!)

This is what it looks like 1 day

after Cochlear implant surgery.

They used the same incision site.

 Where is the implant? you can't really

 see it in this picture.

So more to come as things progress.

Thanks for your prayers and well wishes!

He's on the mend, this will be a

much eaiser recovery.