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.

I don't know if you can tell in the photo, but Abby lost her first tooth yesterday. She's getting SO big!! As it turned out, she already had an appointment scheduled at the dentist today. She is pretty happy about all the attention that her big girl smile is getting, but she was less than thrilled to see the dentist. She cried big tears the entire appointment, which took forever. Her teeth look healthy, except for the damage of grinding. Thankfully, she was calmed down by the time we got to the car.

Maybe PT, dentist, and hippotherapy was too much for one day?




Logan tagged along with us to the dentist. I thought he could warm up to the idea of a teeth cleaning since he has one coming up. Let's just say, after witnessing Abby's apparent torture, I doubt he gets in that chair without a fight. Yikes.

Vacation!

After Abby's appointment in Birmingham, we drove a few more hours and spent the weekend at the beach.  I think the pictures speak for themselves.

The water felt wonderful.  Abby ha just about outgrown this float, but it works so well.  I'm going to have to find something similar next year.  

Playing in a water-filled boat was a good way to cool off.

The boys spent lots of time at the driving range.

Abby was less than impressed with golf. 

  

Rett Clinic

Abby just had her appointment at the UAB Rett Clinic.  The big concern from our last appointment was her weight, so we're relieved that she has gained a few pounds and her BMI looks good now.  Yay!  We talked about supplements and such, and we'll see what the endocrinologist recommends later this week.  She'll probably need some additional vitamin D or calcium. She has had a few seizures over the past few weeks, but they seem to have subsided now, so we're not changing any medicines.  We talked a little about communication devices also.  We haven't had any big issues that we needed support with in the past 6 months, so the visit was rather short.  That sounds funny because its not as if she hasn't had any issues.  There are always issues.  She has Rett Syndrome, but we're a little more confident that we can handle most some of them on our own with the help of her local doctors.  I think that's progress.  We didn't even ask him if he thought she was doing okay.  It seems like we have asked Dr. Percy that at every appointment.  I don't know what we expected him to say....something like "she is doing so well that I question whether she really has Rett Syndrome at all".  Yeah, right.

Ummm... it turns out, that is bad question.  I don't even know how to answer it when other people ask me how Abby is doing.    

IRSF Conference 2011

What an amazing weekend! The conference this year was even better than last. Here's my attempt to summarize some of the highlights:

First of all, I got to spend time with my Rett family.  Many faces I had already met, and some have only been in our club a few weeks. These are friendships that were made because of the diagnosis of our daughters.  These women have changed the way I see our journey with Rett Syndrome.  Their support and insight gets me through those rough days.  It is always wonderful to actually see them in person, instead of keeping in touch only online. The atmosphere is so comfortable.  The laughs and tears come very easily among this group, especially on a weekend like this, when we have so much to be hopeful for, but are constantly reminded of the difficult reality of our daughter's diagnosis. 

One of the memorable moments of the weekend was the keynote speaker, Dick Hoyt, of Team Hoyt.  The man is the father of a Rick Hoyt, a young man with cerebral palsy.  He has raced with his son in marathons, triatholons, and Iron Man races across the country.  His story is amazing.  He has opened doors for his son in a way that I just can't even believe. So inspiring!

In the world of Rett Sydrome Research, there is much to be hopeful for.  The acceleration of research has led to the first ever drug trial to treat Rett.  This trial is taking place at Boston Chilren's Hospital, and was one of the leading reasons for my attendance at the conference.  I was so excited to hear how the trial was going.  I attended several sessions discussing the specifics of the trial.  While I was in the session, it all made perfect sense to me.  When I tried to recall this information when I returned home, I was at a complete loss.  You will have to trust me that it is all good news.  The IGF1 trial has real potential.  Phase I of the trial is nearly complete.  There have been no adverse side affects of the drug.  Yay!  Secondly, there are improvements in function of the girls taking the drug.  That is a great thing.  For those of us with girls with Rett, improvements are not taken lightly.  Abby has been working on walking up steps for 3 years with no improvement.  She has been in speech therapy since she was 2.  She has been trying to put her spoon to her mouth for nearly 2 years.  She has been trying to grasp objects with her hand since she lost the skill 4 years ago.  Can she do it? Not so much.  And she works really hard.  She goes to therapy a lot and practices every day at home and school. Improvement often seems out of reach, rather maintenance of function is our goal. If she doesn't lose a skill, we are happy.  It would be remarkable for Abby to receive a drug that would improve her function.  The neat thing about this drug is that is doesn't just target one symptom.  The increase in IGF-1 is proposed to mature the synapsis, which would improve multiple symptoms.  It almost sounds too good to be true.  I got goosebumps listening to the remarkable progress that is being made and the researchers and doctors that are making it happen.  I think the Rett Syndrome World Congress next June will give us even more exciting news!

It is truly humbling that so many brilliant people have dedicated their lives to helping our girls.  Of course, the IGF-1 trial is not the only avenue of research that is currently being pursued.  There are other trials in the making and other ideas being explored.  I feel more hopeful than ever that a treatment or treatments will be available soon that will dramatically change Abby's life. Yeah, I am actually letting myself believe that without trying to protect my heart from the disappointment of the "what if is doesn't happen".  It will happen.  

IGF-1 Study 

Dr. Omar Khwaja, lead researcher for the trial (and one of my new favorite people)

Lastly, I went to sessions that helped me better understand eye gaze communication, gastrointerology, endocrinology, education, literacy, and genetics in relation to RS.  It was packed with useful information that I can use to help with therapies, communication, medical issues and the transition to kindergarten.  The speakers were so knowledgable and down-to-earth.  As a parent of a child with special needs, we are often faced with what our kids are unable to do.  It is refreshing to spent time listening to experts tell us what potential our kids have.  It reaffirms what we do everyday.

     

I'm not at all superstitious, but this was the fortune in my cookie on Saturday night.  I'm just saying....

  

      

Preschool Graduation!

I just can't believe that Abby is going to be in kindergarten next year, and that she will leave the teacher and aides that have been so wonderful to her for the past two years.  She will have a new school next year with all new teachers and therapists.  Yikes! It's going to be quite an adjustment, especially for me.  She has such a great relationship with her preschool teachers.  They just "get" her.  They really do, and she is hard to get sometimes.  I will be forever grateful to them for showing me that I can trust others to care for Abby.  I was hesitant to let her out of my sight on the first day, but after seeing how wonderful they were with her, I was not only comfortable leaving her in their care, but I was confident it was the perfect fit for her. She has had a great preschool experience!

Waiting...

I am learning that getting any equipment for Abby is going to take a long time.  Our insurance is notoriously slow.  Add to that the fact that Abby's disability qualifies her for Medicaid, which is very helpful, but carries along with it a lot of additional red tape.  Maybe the goal is to make the process of getting equipment so slow and painful that people will eventually give up?  I'm not sure.  In any case, it's ridiculous.  We have been working on getting a trial for an eye gaze communication device since November-ish.  I just got a confirmation last week that the company had all the necessary documentation to submit the claim to Medicaid.  Finally.  It had already been approved by our insurance, which is probably what took the first 7 months.  Now we wait.  And I know it will be worth the wait.  I'm just SO anxious for her to have a talker!  There are plenty of girls who haven't acquired a device until a much older age than Abby, and are doing well.  I don't think there is a closing window of opportunity.  But its just crazy that we know there is something out there that will allow her to communicate and its taking so long to get it.  I am not ungrateful. It appears that our insurance is considering it a covered expense, which is a good sign, its just that it is taking SO LONG to get it!!!  I think it could be much simpler.

The patient cannot talk.  She cannot use her hands.  She shows the required cognition to use such a device.  Give it to her!

See?  Pretty simple.  

I hope I don't sound ungrateful.  We have been so blessed.  Whenever we really need something for Abby, we have been able to find a way to get it.  Its just that I think this will be the closest thing to hearing Abby talk.  We've already been waiting a long time to hear what Abby has to say and she's been waiting a long time to express herself in a way that others understand.  Can you tell I'm a little anxious?!?