Device Update

The process of getting an eye gaze device for Abby has been painfully long, but we are getting very close... I think.  First, we had to get the trial approved by both our insurance and secondary insurance.  That took forever.  It took a while to actually trial all the devices.  Now we have made our decision and we're again waiting for approval for the purchase of the device.  Yesterday, I am happy to say, we received our approval from our primary insurance company!!!  It should have been a given that they would approve the purchase since they already approved the trial, but I was still holding my breath that it would work out.  As it stands now, we are just waiting on approval from her secondary.  That was the longest wait for the approval for the trial, but at least it is the last part of the process.  As soon as they approve, which they should since they already approved the trial (and it was successful), we will get the device.  I hope that PRC has a device available and we don't have to wait a long time to get one shipped.

Now that we have decided on the device, we made a low tech communication system using the symbols that will be on her talker.  It is not a perfect system, but it will keep her familiar with the symbols while we are waiting on the device, and it will give her a way to communicate that is similar to the talker.  Even when she gets her talker, she will need a low tech way to express herself using the same symbols for those times when her talker isn't working properly, or if we don't have it with us.  This is the first time we have used these particular symbols for anything other than the eye gaze device trial.  When I showed it to her, she looked super intensely at the "home screen" symbols.  I think she was expecting some sort of voice output (other than me) when she looked at the symbols.  I'm sorry Abby, but we're working on it!

Laughing is better than crying, but...

sleeping is even better than laughing (in the middle of the night, anyway). I love to hear her laugh, but I don't love this laugh as much as her real laugh.  This laugh is the anxiety laugh.  It happened first when we gave her Claritin when she was 2. We thought the meds would make her drowsy.  It didn't.  It made her laugh hysterically for hours.  It was funny, but really weird.  She was out of control.  Since then, she has nighttime laughing a lot.  Most nights she wakes up laughing once or twice, sometimes for a few minutes, sometimes up to an hour.  I guess this is a Rett thing.  She is in her room in the dark in the middle of the night laughing hysterically.  I like to hear her laugh, I really do.  We've had lots of nights of crying, and this is definitely better, but I would rather she be sleeping peacefully.  Better yet, if she is laughing, I want to know what is so funny.  Then, I could laugh too.

Abby does things that surprise me every day.  Sometimes they seems small, like starting to lift her foot up to go up the stairs.  Sometimes they're big.  Today, it was a big day. Fall is here, and though it was a little cool, the sun was out and the leaves are beginning to change, so we couldn't resist taking the kids to go hiking.  As you can imagine, we don't go on long hikes, but it's nice to just be in the woods.  Lately, Abby and I walk around at the trailhead with her wheelchair, and Logan and Wes run through the woods.  Today, however, I noticed that the trail was only going to be 1/2 mile roundtrip.  It was uphill for the first half, and down hill on the way back.  At the risk of carrying Abby uphill for the entire walk, we left her chair in the car and only grabbed her harness.  I thought that she would walk for a while at least, and then we could carry her or head back to the car when she stopped walking.  She does very well with her harness, but she doesn't have a lot of endurance and she sometimes goes limp when she gets anxious.  Much to our amazement, she walked up the entire trail with a huge smile on her face the whole way.  When we got to the top, she was out of breath.  She was breathing heavy and fast because she walked a quarter mile uphill, not because she has irregular breathing.  I don't think I have ever seen her out of breath out of exhaustion before.  Her body having a typical response-that's not something that we see every day.  Anyhow, after catching her breath, we turned around and she walked all the way back!  

She rocks!   

I think there will be many more trips to this forest.  I love paved trails in the woods.  Dirt trails with roots and rocks are tricky for unsteady little ladies.  When she gets unsteady, she gets anxious.  When she gets anxious, she collapses (hence, the need for the harness).  When she collapses, she needs to get regulated again before she can bear weight on her feet.  Paved paths may be just the thing for us this fall.  

With this being RS awareness month, I will focus a lot of my attention, and the attention of others, on Rett Syndrome.  This is a good thing because we need RS in the public eye to get the support needed to fund a cure and help our girls.  Sometimes it's hard, though, to be consumed with Rett Syndrome.  I hate what it is doing to Abby and all her friends.  I am going to take time this month to not only spread awareness, but also celebrate the amazing things that Abby is doing every day in spite of Rett Syndrome.  Maybe this will keep me from letting Rett Syndrome get the best of me this month.  On days like today, it is certainly not getting the best of Abby!

Rett Syndrome Awareness Month

It's October 1st, so let the awareness spreading begin.  IRSF has lots of creative ways to spread awareness throughout the month.  We'll be giving a few of them a try.  I have found all of Abby's purple bows and outfits, and we're on the search for purple nail polish.  I still need to print out a few pages of information cards to hand out during the month, but we're about ready.  Be on the lookout for the Rett Syndrome public service announcement on your local tv or radio stations.  Copies were sent to stations all over the county, and I'm hoping they are given air time.
 

Decision time

We have finally decided which eye gaze communication device we are going to get for Abby.  We have had a brief trial of the Dynavox, a month with the Eco2, and couple of weeks with the Tobii.  It wasn't easy to get a test of all 3, but our SLP begged and pleaded until the rep. just let us borrow one.  The Dynavox was not a good fit for her at all.  I don't know if it was her glasses or just the device itself, but we couldn't get it to do much of anything while it was here.  She did great with the Eco2 and I really like the language system.  The Tobii is also nice.  It was easy to set up and calibrated to her very quickly.  There are lots of girls who are having success with both the Tobii and the Eco2, so I wanted to be sure that we got the one the Abby would be most successful with.  Finally, after much deliberation, we have decided to submit our paperwork for the Eco2.  Abby really did better with it than the others, and I think it will do everything that we need it to do for her.  I hope now that we have done the trials, the purchase will go smoothly.    

Strollin' for a Cure 2011

What an amazing day!  We had the perfect weather for the strollathon again this year.  It was great to see all the families and their teams supporting our girls and our effort to fund research for Rett Syndrome.  Our treatment is coming!  It feels great that this fundraising could play a part in making RS the first treatable neurological disorder.  The Tri-State Strollathon is huge! I think they said there were over 50 teams participation this year.  It raised over $175,000 for IRSF.  Isn't that crazy?  When all the offline amounts are totaled, we will have surpassed our $5,000 goal again this year!  I can't thank those of you who support Team Abby enough, whether you participated in the walk or made a donation to our team. You rock.  It means so much to our family to have so much support!  Here's a few photos of Team Abby.  They make the 2 hour drive to Cincinnati every year to stroll for a cure:)  Go Team Abby!

Wes and his mom, or as she is known by the kids, Nonnie

Uncle Joe and Aunt Victoria

Grandpa and Nanna

Julie (with baby Emily on the way) and Brooke

 Aunt Rose and Aunt Cheryl

 

Cool Kids!

Fundraising is not my favorite thing, to say the least.  I don't like asking people for money.  If those of us with kids with Rett Syndrome could fund the research needed to save our children ourselves, we would.....gladly.  It's just too expensive for even this very committed community.  We need the support of lots of people. It's just that simple.  Asking people to give up their hard earned money isn't an easy task, though. Thankfully, this year's fundraiser reminds me again how blessed we are to have such amazingly generous people in our lives.

There are several donations to Abby's fundraising page from complete strangers.  Maybe these are families who follow her blog?  Maybe they are in the same line of work as Wes and have stumbled upon his blog with her link?  Again, amazing generosity! We've had donations from old friend and neighbors.  And then there are our family and friends.  Most importantly, they support us by loving and accepting Abby.  We know they celebrate her accomplishments and are praying for a cure.  They participate in the strollathon every year and give to her cause.  We have been blessed with a very supportive family.  Just this week, Abby's cousin, Emily, celebrated her birthday.  Instead of receiving gifts at her party, she asked her friends to make donations to Team Abby.  Wow.  How cool is that?  Her birthday party raised over $300 for Team Abby! I hope Abby makes friends in school who are just as sweet as these young ladies!

Thanks Emily and all the CAL girls!!