Proloquo2Go 2.0 & SwitchXS

Tuesday, was the much anticipated release of Proloquo2Go 2.0, at least for our family it was. The big hoopla about this update was the introduction of a core vocabulary. I basically spent all day in a iPad fog. There were a few glitches that we worked through. AssistiveWare's support is wonderful. 

So here's the low down for Caleigh. I made the choices smaller and gave them a bit of spacing between each button. This gave her more choices per page. Each page now has a page up and page down, which will really be amazing when she is spelling for us. I kept the "home page" button on each screen because it is easier for Caleigh to get to an actual button instead of the toolbar located at the bottom of the screen. 

So what about the Core, you ask? We'll, it really does look nice. I think it will change a lot of kid's lives. Really, I do. The addition of this core takes Proloquo2Go right up to the level of the big box AAC devices. There are a ton of new words for Caleigh to partake in. With that said, unless you have every button and word, or at least 8-10 rows and columns on the screen, it just isn't very feasible to create a sentence structure. Having 4-6 folder options to a screen doesn't make a sentence. I knew this though. This is why each and every device we have tried is limiting to Caleigh. She has the words in her head, she uses them separately, but until we can get a good access method; she will be restricted.

For instance, today at the library, Caleigh repeatedly said "park" "park." I know she wanted to go to the park, but everyone around us just heard "park" over and over again. Maybe she wanted to go the park? Maybe she wanted a book about a park? Maybe she wanted to talk about our awesome park? It's instances like these that make the app difficult.

So I took a lot of the awesome new features and applied them to our original setup. I did look through the core folders and took some ideas for new words, and then added them to the current set where they fit for Caleigh. There is supposed to be a way to copy and paste from one user to another. This would let me copy a useable folder from the core, and then paste it to our original file. This feature is supposed to be available with the next update.

I have been told that switch access is in the works for Proloquo2Go, and that it may be done by the end of the year. You can see what that interface may look like here. I honestly have been looking forward to this since we bought the iPad and app over two years ago. The entire app has to be rewritten for this to be accomplished so I understand the delay. Caleigh, and I are really ready though. I feel like the lady wanting to go shopping in that 90's Marshal's commercial... open, open, open.

While we are waiting, I decided to try a desktop switch access system. Did you know that AssistiveWare makes one? Well, they do, and it's called Proloquo. Not Proloquo2Go, but just Proloquo. It's more of a text based computer AAC whereas Proloquo2Go is for Apple mobile devices and is more symbol based. With a few phone calls and some begging, we were able to borrow a Swifty USB interface for our MacBook. The device turns switches essentially into a mouse and keyboard. The software that does this is called SwitchXS. Through switch clicks and on screen grid layouts you can basically use a computer just like anyone else can. 

It's advanced though. I'm a bit puzzled by it, but after I made a few simplified layouts; Caleigh seemed to catch on pretty well. Right now we are just playing with iTunes. Caleigh is completely motivated by music. So this was an obvious first choice when teaching her how to use switch scanning. Or so I thought.

Music makes Caleigh happy. Being happy causes some serious dystonic movements, and therefore makes switch scanning a lot harder than it needs to be. BUT she does get the idea and that is what counts.

I'm not sure if this setup is the one, but it is definitely something to consider. Some bonuses of using a laptop instead of an iPad can be using websites that run Adobe Flash, operating iTunes, Word documents and also accessing educational software for literacy and writing. Most children's sites (Disney, PBS, etc.) use Flash and because Apple and Adobe don't play well together; Flash isn't on Apple mobile devices. The idea of Caleigh writing school assignments in the future using something of this nature is also very intriguing. We have the interface for two weeks and the software trial for 15 days. So we'll see how it goes.

In the video below, you can see Caleigh using the switch scanning through SwitchXS. The iTunes grid is up and Caleigh is navigating through that grid. To make her choice she used three clicks. One scan and two selects. She is whining, which has been her constant state lately. She whines during school work, whines during therapy, whines. I'm hoping this is a phase. The switches obviously need to be mounted, but because they are not ours to mount, that will not be happening.

The entire setup minus a new laptop costs roughly $900-$1000. So with a laptop we are looking at about $2000. We are checking into insurance as a option for this type of thing, but I'm not sure about the requirements as of yet. It's a pretty amazing system though with a lot of possibilities.

There is another company out there that makes a similar product and it costs about the same. I'm working on getting a trial of it as well before we make any decisions.

If you want to see the video that lit the fire for me you can click on the link here. Christopher started using switch scanning when he was five for Ebooks. He takes his Macbook Pro with him wherever he goes. It's pretty amazing. He has several videos on his channel if your interested.

Ideally, Caleigh will use some sort of switch scanning device whether that be through the iPad or through a laptop. Either way, they are portable. Either way, something has to eventually work.

Summer Solstice

Things have been steady around the Gray house lately. Eric had his promotional ceremony at work. He now drives the big red fire trucks and Caleigh thinks that is pretty cool. The position is actually called Apparatus Operator. We are super proud of him, of course. We attended a lovely ceremony that was over two hours long and Caleigh stayed occupied with books on her iPad. It was a good night.
Caleigh's potty training is still going really well. Often she is dry all day. Lately, if she does have an accident, its just once a day or maybe twice. Most of those accidents are, quite frankly, my fault. I'm only a mind reader 90% of the time. She's doing an amazing job though. The biggest area of improvement over the past few weeks has been during car rides. She can hold it until we get to our destination and that's a big achievement. 
 
Caleigh was cast for a new pair of AFOs with SMO inserts. Her recent Botox injections and weight loss led to the new pair. Caleigh was pretty adamant about keeping the same colors and design that her current boots have. So not too much will change when we do get the new pair.

The splash pad finally opened up close to our house. This year we took the leap and had Caleigh wear her boots with water shoes on them. Her steps are just better with them on. Her ankles are stronger as well. The bonus was that they didn't fall apart getting as wet as they did. Caleigh was nervous at first. I ended up pushing her in and then she took off. Of course, the standard 7-9 year old little girls rushed us with their one hundred and one questions. 7-9 year old girls do not have a filter. These are the moments when I yearn for Caleigh to speak. I want her to be able to turn around with a sassy voice, and simply tell them that there isn't anything wrong with her. Maybe one day she'll be able to. Other than nosy kids, Caleigh had a good time. She walked around yelling and splashing for about forty five minutes.
 

We just hired a new helper, and she will start this coming Monday. We haven't had any help since last August, so this is definitely due. There are only so many days Eric and I can juggle our crazy schedules. It often times feels like a tag team event. I'm sure this is completely normal for most families anyways. We are looking forward to having another helper and my back is looking forward to it as well.

Fleeting Moment

This past week marked the fourth anniversary since Caleigh underwent the STEP procedure. I generally let all of the other dates, medical or otherwise, fade to the background. For some reason this surgery stands out among the eight others. The bowel lengthening procedure set Caleigh on a path of healing, but not before showing us that she was quite frankly on the brink of Heaven.

 
Those first few weeks after the surgery I can recall as if they were yesterday. There are many things that my mind chooses not to remember concerning Caleigh's first few years of life. Trauma often does this, and most of the time it is a self protective strategy within the mind. It's taken me a long time to figure this out, but for some reason with this event I remember.

Blessed. Caleigh is Blessed and we, her family, are Blessed. With the memories of her last surgery on the tip of my mind, I have been experiencing these fleeting moments where I take it in, and feel truly blessed. The day to day rush stands still and I just began to think. I try to take in the last 5 years. It's overwhelming to me, the people that love Caleigh and our family.

I often times feel like I should be pushing out thank you notes on a weekly basis. It's amazing. The love and support got us through those early days and it continues to carry us forward today.
 

Four years later Caleigh's formula intake is the highest it has ever been; 95ml an hour dished out over 11 hours a day. Her short bowel syndrome is now stable. We have learned so much about her unique intestines since then. Time and experience allows us to learn, as well as heal. 

First Round of Botox

At the beginning of this year we decided, after seeing the ortho doctor, that Caleigh would need some type of intervention for her tight muscles in her legs. After going back and forth we decided to try Botox injections first. You can read and see more photos of Caleigh's legs back in February before the Botox here and in the photo below. 

 2-2012
Caleigh handled the injections really well. We didn't plan ahead well enough regarding the Versed medicine that is given to ease the discomfort and basically make the patient forget about the experience. Caleigh's inability to tolerate sugars was the issue. The only form of Versed that the office had ordered was a deep red oral version that was obviously full of some sort of sugar. We wavered back and forth on whether or not to give it to her. Options like bringing child life in, taking breaks, playing her music were given to us, but in the end I remembered every parent that told me about the injections without anything to cut the edge....miserable. So with it being just one dose, we went ahead and gave it to her. I'm glad we did because she still jumped with each injection, and there wasn't any immediate intestinal reaction to the medication. Caleigh received six shots which was divided up from one vial of Botox.

4-18-12
By that night, Caleigh's feet were already touching the floor. Eric and I kept looking at each other checking to see if we were imagining things. We were told that we wouldn't see any results for 3-7 days. That same night though, she was standing flatter than ever before. The next morning Caleigh woke up and told us "I don't like it." Her legs felt different and she wasn't too keen on that. Eventually she was ok with her "new legs."

5-1-12
A few weeks later, Caleigh's legs and feet looked really good. They were flat and the turning in seemed a bit better depending on how she was bearing weight. This is when the side effects kicked in. In all her years, Caleigh's short gut has never been constipated unless there was a stricture or blockage; Botox changed this. For several weeks we dealt with constipation, crying while trying to go potty, disturbed sleep and general discomfort. We gave her Miralax as needed and crossed our fingers hoping we didn't tip the scales too far by doing so. With the constipation, Caleigh was pretty emotional about all the changes she was experiencing.

 
6-5-12
Today, Caleigh's heels are still very close to the ground. We were told that the affects could last from three to six months. The Botox has worn off quite a bit, but we can still see a difference. Caleigh's quads and knees seem to be tighter than before the injections. She is also scissoring her legs some when on her back which she wasn't doing before. Her feet are turning inward more than they were before as well. The constipation has gotten better, but Caleigh isn't back to "her normal" in the stool department. We have definitely been reminded that the human body is a whole system. You mess with one area and other areas will change. There is the option of increasing the amount of Botox used with the next round. The one vial was a small dose to see how Caleigh did with it. You can't hide the fact that it worked in bringing her heels to the ground which prolongs the need for surgery. Eric and I are unsure if there will be a next time due to the side effects, but we will definitely talk it over with our neurologist and ortho before making the final decision.