We bought a house!

I stopped blogging three years ago, I started working full time,

then someone attempted to steal my blog. So I have not been here since then.

So... As of today we are homeowners! 

It has three fun factors...

1. A lake (75 ft of lake front property!)

2. A hot tub

3. A fire pit.

(It also has a cabin but it needs some repair.)

Needless to say WE ARE EXCITED!

July ABI mapping ...and some explaining.

 

July- ABI mapping visit.

 

 Ok so here is how mapping works...

 

An ABI has many components

1 part is the mesh piece that is placed on the brain stem.

It kind of looks like the box below,

it has 20 circles like the ones you see here.

 

Each circle is split in two, and

there is an electrode on each side.

 

It is very tiny, not as big as what you see here.

 

During surgery they try to place the mesh on the part of the

brainstem that provides hearing. There is a test they

do during surgery to tell them they are in the

right spot or close.

 

So this mesh piece has a wire or wires that come

out of the brainstem and goes out to the outside

and attaches to the other part attached to the skull under the skin.

 

Then the exterior component is attached via the magnet under his skin.

It is hooked to the computer and the Audiologist sends electrical

pulse down to the brainstem and see how Chad reacts. 

Sometimes the pulse makes his elbow feel weird, some times

it makes him feel like fainting, sometimes he feels it in his throat.

 

The goal by the way is to "hear" something. In January when we spent

two days mapping he heard nothing. This time he heard 5 tones, however

they were accompanied by a physical reaction. He can't hear a tone

and have a physical reaction at the same time. The team

was able to after 5 hours to get a tone with out a reaction.

We "get" to go back in September for more mapping before they actually

hook him up and let him walk away.

 

He is playing a game

on his ipod and his Audiologist introduced

him to another one on her ipod.

 

Did I mention is was a VERY LONG PROCESS?

 

 

 

April-May-June and a humbling bus ride.

Well time flies when you start another new job.

 

I started another new job at the beginning of April, it is pretty intense but

I really like it. I am selling Commercial, Auto, Home and Life Insurance.

 

The past three months have consisted of Chad having a girlfriend and

breaking up with her. We loved her. :(

His headaches are better kind of.

We are in the process of getting him signed up for College.

 

We hope his head will let him go, he will be taking sign language and another class.

This will be good so he can get better at sign language.

 

 

Last week I was riding the bus to work and a deaf lady got on the bus.

She ran her bus pass through the reader.

It didn't ding which is what happens

when the pass is accepted by the reader.

 

The bus driver tried to get her attention but she did not hear him, another

passenger got her attention and she walked back up and ran her

card through the reader again.

 Then she sat down and her friend said she couldn't see the

streets where she was sitting I know this because I can read some sign language.

So she moved and then when it was their stop they got off the bus.

I realized that unlike most others if your deaf you can't

hear the bus driver call out the street names.

 

I was humbled by this experience.

My life is and has always been easy. I have no right

to complain.

 



March.... Please Spring hurry up!

Hello friends,

I have not blogged in a month because 

I started a new job and there simply is 

not enough time in the day.

Here is an update:

Chad is having LOTS of very bad headaches.

They make it difficult to function like a normal person.

To add to his difficulties he has been having lots of chest pain.

So we had to add a new doctor... a Cardiologist

This brings our health care professional count to 15.

Chad's chest pain is due to 

Pleurisy: Here is the WEBMD definition of what Pleurisy is:

Pleurisy is swelling (inflammation) of the thin layers of tissue (pleura)

 covering the lungs and the chest wall.

Prescription strength Aleve for 10 days.

No new info on the ABI we have not heard from them in 2 months.

We are changing his neurologist to one in our area

so we can figure out how to have less headaches.

Blake is good. Eric is good, I am crazy busy learning my new job.

Hope you are well... I am ready for sunshine and SPRING!

 

February update...

 

Well It's Valentines week.

We have been busy around here.

 

Chad is doing pretty good this week.

We have not heard from the ABI Team since last month

when we were there. So we do not know when we will be going back.

 

Chad went and played laser tag last night and

3 days ago he got a hearing aid. The hearing aid will

be very helpful for him as he continues to lose his hearing.

 

We don't know how long it will take, it could take 3 months or

5+ years. We obviously hope it takes FOREVER!

 That would work out the best for me (and him).

 

So in the last month Chad has been healing still, I think it

takes 2 months to recover from brain surgery.

 

He is having some side effects from his medicine.

He is having chest pain so they asked him to stop one

of the meds and referred us to a Cardiologist.

 

Yes... We get to add another doctor to our TEAM!

 

I started my job a week and a half ago.

Blake finished wrestling and Eric is doing the same thing.

 

 

I am laming on the pictures. I will try to get some up soon.

 

Happy Valentines week!

 

 



Not the best news... and that thing I wouldn't tell you.

Hi to all my readers...

 

Here is what I didn't want to tell you till it was over.

(because it FREAKED ME OUT!!!)

 

Well about 6 weeks ago we went to Chad's pre-op

appointment and the ABI "team" said that when we

turn on the ABI they would have a nurse, Dr. and a crash cart.

 

I wish you could have seen my face! It said "EEEK! DON'T TELL ME THAT!"

 

I was alone with her and later that day Chad's doctor told him the same thing.

But... Chad does not hear well so he didn't hear it. (Thank goodness!)

 

I did not mention it to him.

 

So... We spent the last two days 3 hrs each day.

 

 

 (I tried to post pictures but something is wrong with the website.)

Well anyway... Wed they had a crash cart in the room and Chad
was curious about it. Then Thursday they got a different
crash cart in the room and they hooked him up
he asked "why am I hooked up to this AED?"
They said... just in case your heart stops.

He said "no seriously why?"

They said in case your heart stops... He then got nervous.

We went on and did the programing. 2 days... 3 hrs each day.
Exhausting...

There are 20 electrodes on the ABI and they turn each one on by
sending in a current and seeing how Chad reacts, what he feels etc.

He mostly began to feel faint as they got to a certain level.
So they would send in a current and then increase it
 and increase it and increase it
until he felt something. Usually he felt like he was going to faint.

Occasionally he felt something in his ear, or throat or at times elbow.

But the bad news is.. No sounds. :(

So the people from Cochlear and the Audiologist both are
going to do some research and we will go back.

We got home very late.

Then today we took him to get fitted for a hearing aid.
He was not happy about going to the doctor again.

That is our update. Thanks for reading! 

 



4 More days...till we turn it on!

An ABI must be turned on.

 

It is going to take 2 appointments on

 2 different days...

 

Why?

 

Apparently it is exhausting to do.

 

We turn Chad's on this coming Wednesday.

I am still not going to tell you the scary

 part until we get back. 

(When it is over!)

 

Last week we also took him to get fitted

for a hearing aid. His doctor wants him to have one.

 

Do you know how much those things cost? 

Actually they are CHEAP compared to and ABI.

 

So 4 more days...

 

 

 



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!