Sunday, November 25, 2012

device trial

It has been a long process, trying to get a speech device for Avery.  We were very close to getting the Eco2 by PRC--the paperwork was submitted and everything was moving-then we found out about the Accent 1200.  PRC's newest device-smaller, lighter weight and with advanced eye gaze technology. We wanted to try it just to make sure it wasn't a better fit for Avery.  In September we got to try it once.  We spent a lot of time trying to get the thing to work right, get it calibrated etc, and even though we could see Avery was interested, we lost her due to making her wait too long.  Then we decided we needed to do a long term trial (one month) but that the Accent 1200 wasnt yet available for that b/c it was so new.  In late October we found out we would have it for a month!  She used it at school for a while-instructors were trained and there were issues.  It was freezing up, hard to get calibrated etc.  Luckily the timing of the trial allowed us to keep the device at home over the week of Thanksgiving-giving us a lot of time to get Avery to use it.

I was able to speak to the PRC rep last Monday and we adjusted the settings and got it calibrated and got going.  She showed me how to turn on the save data function-it keeps a record of everything that is "said" on the device and it can be downloaded later.  It was super easy to save it to a flash drive-Im so glad I did because Avery did some pretty awesome things with it!

On monday, while talking to the rep, Avery's behavioral therapist was here helping.  We had Avery sitting down in front of the device and was not that motivated.  We got her some mini m&m's. and here is what she "said" (we hadn't turned on record yet and we were using the 45 1 hit display with all the icons showing)

want, do, go, read, is, do, need, chocolate.

when she hits "need" the activity row at the top gives her choices like "medicine" "help" "drink" etc and on the 2nd page, after you hit "more" there is chocolate. she wanted more m&m's.  it was awesome.

then she said is, turn, do, need, drink, water, get.

I mean.  come on.

We realized she was accidentally hitting words that were close to the words she really wanted so we hid some of those.

Later that day, she said go bathroom.  So I took her and put her on the potty.  She thought it was hysterical-and didnt go.  But I had to reinforce it!

Another day, with her behavioral therapist, while eating yogurt after a meltdown she said: my eat yogurt good good more like.  Her therapist asked her: are you happy now? and Avery answered yes.

On Thanksgiving, we took the device to grandmas but she wasnt into using it too much. Partly because we didnt really have a good spot for it and it was freezing up a bit on me.

The next day we took it up to her uncle's girlfriends parents river house about 4 hours north of here.  We set it up in the kitchen in a high traffic area.  The first thing she said was like need hug want please please I.  So her uncle, who was siting there gave her a hug!

On Saturday morning, I was giving her breakfast and she walked over to the Accent and once I got her in the right spot she said need medicine. And I said, yes you do need your medicine goose!  She takes pills every morning and she was right on with a reminder!

Around snack time, she went up to it on her own and said eat raisins. Luckily I had some. :)

That night, we were getting ready to get in the car for our long drive home and she again went to it on her own and said drink, want, read, go, walk, I live in pleasant hill. I know she was saying-Im ready to go home!  Lets go!

Im pretty convinced that this is just the beginning of wonderful things.  Im very encouraged.

The Accent goes back to school tomorrow and back to PRC on Wednesday....and then we wait.  Again. Keep your fingers crossed.

Thursday, November 22, 2012

mare island

For a place that I called home for such a short time, Mare Island sure holds a large piece of my heart. So when I found out there was going to be a 5k on Mare Island I knew I had to be there. 

Im pretty sure we lived there from 1977 till 1979. I was 3 years old when we moved there and 5 and a half when we left for a larger home in Vallejo.  

Now, 33 years later I live just about 20 miles away from Mare Island.  Back in 2002 when my mom came out to visit, we tried to go drive around and find our old house but the guard wouldn't let us on base. (Even though the base had been deactivated years before I think it was extra security from 9/11.)  We were pretty bummed.  When my big brother came out to visit in 2008, the guard was gone and we just drove right on.  Right over this bridge.  And in moments he was saying "there is the bowling alley"   and recounting memories from the old days.  We then made a few turns and found ourselves on the road behind our old house.  We had lived in a duplex that was in a row of duplexes-all the same-so we had to do it by memory.  And there it was.  The plum tree was still there and the hydrangea. It was surreal.  The duplexes are now abandoned and dilapidated.  So much smaller than I remembered.  We parked my car and walked around a little.  Looked into the windows and recalled snippets of our childhood. Easter photos in the front yard, birthday parties in the back.    

Until this past weekend, I hadn't been back.  I have driven by on my way to Sonoma here and there and I always just look over wistfully and nostalgically.  So when we crossed that bridge again, I had to snap a picture. Then I saw the chapel and had to take one of that too.  
St Peter's Chapel

the bridge over to mare island 
I had sent a message to my oldest friend Becca (we met on Mare Island back in the day and reconnected via Facebook after many years searching about 4 years ago) to tell her about the race.  She said she would be there.  I found her at registration and we chatted before the race started.  We felt pretty proud (at least I did) to say to anyone that cared that we lived there when it was an active Naval Base.  

The race started and we ran by the old hospital, then my old school, then my house.  I told Red we would have to drive back over after the race to check it out again.  And that we did.  I strangely have so many memories from that place.  It just makes me happy to be there. 
Becca and I decided to make it an annual event. Can't wait to do it again.

back window

"maids quarters" in the back-basically a studio apartment above the garage- which would have made a sweet  spot for a teenager.

back door, enter to the door and go right and you are in the kitchen
me and the family, Easter 1978, in the same
spot Im standing in the pic on the left!

me, post race, in front of the old place

me and becca-met on mare island and came back to run it.

Friday, November 9, 2012


Today marks the three year anniversary of the day our lives were changed officially by Rett syndrome. 

Three years.

Half of Avery’s life.  Seems like a lifetime away. 

But, Diagnosis Day is a day we will never forget, much like anyone who is told "we have a name for what is causing your child's problems"-- the day gets time stamped in your memory.  

The 2nd anniversary was a little easier than the first and this year was a little easier than last but it still marks the day our lives were changed forever. 

So it was totally fitting that I spent the day at Katie's Clinic, where for nearly a year, I have been lucky enough to work.

It was perfect timing for me to welcome four new families to the clinic and get to also see one follow up patient. Im so inspired by these families and it helps me deal with our situation but helping them see that it will be ok. Im inspired by our clinic staff and volunteers that sacrifice so much of their own time for our families.  Im inspired by seeing three of the families today laughing and bonding over lunch.

Im inspired.

As I walked in the door tonight, I could hear Avery screaming/yelling and I thought, oh man, here we go.  But then she was quiet. And then we danced in her room.  And she smiled and didnt yell.  And didnt yell some more.  And I was inspired.

I am inspired.