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!!

Abby & Logan

Lately, Logan has been very curious about what is going on with his big sister.  We were playing catch last week, and he wanted to throw the ball to Abby.  I stood by her to help, and he said he wanted me to move so he could throw it to her.  Well, letting him throw a ball at her was not going to turn out very well, so I had to explain in a way I thought he might understand that Abby's hands don't work very well, and she can't move them in the same way that he can move his hands.  He looked at me like he completely understood, and continued playing catch, without insisting I step aside and let Abby play by herself.  Several times since then, we have noticed Logan trying to hold Abby's fingers apart and stop them from patting.  When asked what he is doing, he tells me he is helping her.  Makes me happy and sad at the same time.  I love that he wants to help but it breaks my heart that she needs so much help.

I wish Abby and Logan could play together, even argue with each other, like other siblings, but I am grateful for the special relationship they do have.  Logan has learned how to play carefully around Abby.  He is a very energetic little boy, but he has never knocked his very unsteady big sister over when she is walking near.  How is that even possible?  If he were to bump into her, she would surely fall down.  He runs near her, bounces around her, even hugs her while she is standing, but she doesn't fall down!  That's really amazing!  When he plays with toys while she is walking, he doesn't leave anything that she could trip over on the floor.  When his friends come over, he makes them pick up their toys because "they will make sissy fall".  He tells me when she is reaching for food or a drink, or if he thinks she is wanting something.  And she gets a kick out of him and his nonstop talking and running around like crazy person.  He cracks her up....most of the time.  She pats his little head when they watch cartoons and smiles when he talks to her.  They clearly care about each other, and show it in their own way.  

And while they don't argue, they do take a little pleasure in the occasional distress of each other.  Abby often laughs when Logan throws a fit in the car.  She laughs OUT LOUD, which makes him cry even more.  The other day, Logan was screaming (like only a 2-year-old can), and I commented to Wes that Abby was laughing...again.  Logan stopped crying and said "that's rude, Abby".  Yeah, its a little rude, but very funny.  Logan is not completely innocent either.  If I give him candy to share with Abby, he does his version of asking her a yes or no question. He does not, however, use any yes/no cards or use eye gaze to determine her response.  If he asks her if she wants a piece of his candy, he determines (through telepathy, I guess) that her answer is almost always NO.  Imagine that.  Abby never wants Logan to share anything with her. Funny.

There are many times that I wish they could have a different kind of relationship, one where they didn't need an adult to intervene for them to interact.  I guess there will be time for that, though.  Logan is still only 2, and he will learn how to interpret her communication as he gets older and she will have a device that will help her communicate.  We are still very hopeful that there will be a treatment in the near future that will give Abby much more control of her body.  Who knows, maybe Logan will be helping Abby catch the ball after all!

Kindergarten!

Abby has been super excited about kindergarten for weeks.  We've talked and talked about it, and she has made lots of comments on her trial device about kindergarten and her new school.  Very exciting.  Her first day was supposed to have been on Monday, but it was cancelled due to power outages until today.  She woke up in a great mood and was ready to go!  She had a great send off party, with a surprise visit by her Grandpa, Nanna, Nonnie, and Papa Dave.  Only Abby can get such a crowd out at 8:00 in the morning.    

Abby had a lot to be excited about.  She has been placed in a school with a great team of teachers and therapists working with her.  It was a very late placement, but we pulled together a meeting on Friday to go over her IEP and discuss the many things that make Abby.....well, Abby.  I think this team is going to be great!  Her teacher is as excited to have Abby in her class as we are to have her there. She read this blog when she found out the we were interested in her classroom.  How cool is that?  The therapists had lots of great questions at the meeting and I'm confident that Abby will be challenged in this school.  I was so frustrated over the summer about how students are placed in schools in our district.  I found classrooms that I liked, but I didn't feel like my input was taken into consideration.  At the beginning of the summer, I decided that I had done everything I could do in regards to her placement, and I wasn't going to worry about it anymore.  I had a "we'll have to wait and see" mentality.  I just prayed that Abby would go to a school and work with a team the would care for her, keep her safe, and help her learn.  I was so happy when the very school I wanted for her had a spot open up the week before school started.  How wonderful a feeling it is to be able to spend the day with Logan and not have to worry or feel guilty about not being with Abby.  And it was so nice spending the day with Logan.  A little one on one time could be just what he needs.   

Abby was exhausted when I picked her up from school.  She slept on the way home, and took catnaps until an early bedtime.  Its going to take her a while to get used to the long day.  Her teacher said she was happy all day, was successful on the potty and ate well. Yay!  So proud of my big girl!!!  

   

A small step for some, but a BIG step for us

So, Wes and I have been in the Rett Syndrome business for three years now.  In that time, we have talked about Abby and her battle with RS a lot, but usually it is with people who work with Abby or our family and friends.  We haven't done any news articles or talked about the strollathon on our local news.  Ive thought about it, but haven't been quite comfortable enough to do it yet.  This week, though, we took a step out of our comfort zone to raise awareness, and hopefully funds, for Rett Syndrome.

Wes's employer participates in a giving campaign that encourages it's employees to make charitable contributions taken out of their paycheck to the United Way.  During the past year, he has worked to enable employees to make their donation to IRSF, through their United Way donations.  Last week, they held a meeting which, in part, discussed their contributions.  It was the perfect opportunity to educate the other members of his department about RS, and what an impact their contribution could make.  He invited Jenni Grammer from IRSF to talk about the foundation and what their mission is.  She showed a terrific video, talked about what RS and what a difference they could make by making a financial contribution.  Jenni is a great speaker and advocate for our girls.  It was awesome seeing her again! I introduced everyone to Abby and talked a little about her and her journey with RS.  I kept her introduction pretty short because the last thing I wanted to do was get teary eyed.  It worked well.  I asked if anyone had any questions....and they did, which was great.  They asked lots of questions that gave us the opportunity to share all kinds of aspects of Abby's life that I wouldn't have thought to mention.  I'm so proud of Wes for getting the whole process started.  He was a little anxious about sharing this part of our family with everyone that he works with, but he is now glad that he did.  They were extremely supportive.

Abby getting a hug from Jenni before she heads back to Cincinnati

It was a small step, but I talked about Abby and Rett Syndrome to a group of people, some who I don't even know, without getting too flustered or crying at all.  I can think of things that I wish I had said, but I guess that will always be the case.  After all, Abby's journey is not one that can be summed up easily in an hour.  The response was very positive, which gives my confidence to do it again.          

Abby's ECO2 with ECOpoint trial

First of all, let me explain why we need to have a trial for an eye gaze device.  As you all know, Abby doesn't talk and doesn't have functional use of her hands.  Yeah, Rett Syndrome, thanks for that.  This combination makes communication extremely complicated.  Her most reliable means of communication is her body language and her eyes.  With her eye gaze, she responds to yes/no questions and makes choices.  This very simple communication system doesn't allow her many options to express herself.  This is where an eye gaze device comes in to play.  These devices are meant for people just like Abby.  It allows a person to use their eye gaze to activate a device that generates speech. With the device, Abby can use her eye gaze (or dwell) on a symbol that represents a phrase or word, and it will say that phrase, or lead to another page of words to say.  It can be as simple or as complex as the user needs. Pretty cool.

While we know that Abby can use this type of device, a trial is necessary for insurance.  Her speech therapist will submit documentation that Abby is able to successfully complete a trial.  We want to trial the ECO2 and the Tobii Ceye because we want to see which one is easier for her to access and which language system is the best fit.  One device may work better with her glasses, her head movements, her strabismus, and such.  Also, the language system in one device may be preferable to the other.  The Adapting Creatively blog describes the trial process very well.

So now we have our first trial, the ECO2.  Wow.  It's just amazing.  I played with it for a day before getting Abby in front of it to personalize some of the pages and get it ready for her.  I found it fairly easy to create and modify pages.  There is a lot of personalizing that can be done, which is great.  The first task with Abby was to calibrate it to her eyes.  At first, I used the dot that she was supposed to follow with her eyes.   We found she was more successful when she tracked a zebra picture.  Her glasses and strabismus don't seem to be a problem, which is a relief. After calibrating it, I gave her some time to "target practice".  She needs to figure out how long to dwell on an object before it is selected.  There are a few different ways to practice, but the train demo seemed to suit her.  It is a simple enough activity that kept her interested.

There are a few different communication sets that we are using for the trial.  There is a exploration wizard with a 15 key area that is working well.  The symbols/icons on this device are foreign to Abby, so an area with only 15 keys is low stress and will give her a decent amount of things to say.  Each of the  keys leads to different pages with more choices.  I have also been giving her time working on a user area with up to 45 keys.  This would be the user area she would use if we decide to go with the Eco2, so I want to see how she is able to work with that user area also.  It is set up different than most other devices, so I want to see how she can navigate it.  I am just giving her time to explore, and responding to anything she says.  Its important to make it is as no-stress as possible.   So far, I'm noticing that she is able to make choices in the center of the screen easier.  I sort of expected that.  She will go to the outer keys, though, just not as often.  I have also noticed that she navigates to a few of the pages more often.  She has been going to the phrase based page about herself repeatedly.  She says "my birthday is April 13th", "my name is Abby", and "I am five years old" over and over. That seems pretty typical for a kid playing with language for the first time.

I am resisting the urge to ask her questions that would result in a right or wrong answer.  The teacher in me wants to get some sort of assessment of her progress, but I 'm realizing that Abby doesn't quite fit into that model.  Thanks Colleen for reminding me that the device is for Abby to communicate whatever she wants, not just for me to assess what she understands.    

I am SO anxious for her to really be able to use a device to start expressing herself, but that's going to take a while. Learning the meaning of the symbols and the navigation through the pages is going to take a long time, but it will be so worth it.  She already is enjoying being able to choose what she wants to say, even if she hasn't completely figured it out yet. It's just amazing....and we're just in our first week.  We have it until August 18th, so I'll be posting updates.  

I have lots of videos that I have on my phone that I will post.  I'm having trouble getting them on my computer, though.  It is telling me that they are corrupt??  Wes will figure it out and I'll post them later.