Test Run

Levi's trial device arrived! We have enjoyed working with it the past few days and while it will take some time to fully get used to, he is picking it up very quickly. In this video, we had really been doing the puzzle for maybe 10 minutes and he had never seen the puzzle menu before on his device and was already using it. Smart cookie!  Notice too when I ask him his name and was at the home menu, he knew right where to go.  We have made very slow progress with sounds, but he can say "yeah" when he is looking at me to get a cue of how to form his mouth. He also was mumbling his no, which sounds like "oh" for him, but when I asked him to try harder it sounded much clearer. It's such hard work for him to make the sounds he wants. I don't blame him for getting lazy with it. He's allowed to be two, Apraxia or not. (Please try and ignore my voice.... ugh)

 

Here's a look at the device. It's about the size of an ipad mini. There is a bluetooth speaker mounted on the back.

Here is the first menu you see, or the "home" menu. 

When you tap chat, it takes you to these common conversational phrases. He tapped "name" to say his name.

If he taps "I want" it takes him here, where he can choose what he wants next.

This is the "to play" menu

This is the "cars" menu. I added the "Mater" button, since that is his favorite toy car that we have. He can tap two buttons to start pairing words together, such as "car crash" and "Mater jump". He should be pairing words together and forming sentences at his age, but since he can't speak, he is very behind in this. A device can aid him in building this language skill even when his mouth can't keep up.

This is the "puzzle" menu he was using in the video.

This is the "things" menu, which we will add into use over time. It helps provide words that he may want randomly, if he's hurt, wants his socks, or to wash his hands.

I'm excited to use this menu tomorrow so he can tell me what he wants to see at the zoo!! He's never been able to do that before. I'm curious to see what he decides.

So that's the basics of it. We have given the OK to go ahead and start the process of getting this ordered, but I'm not sure if they'll be able to do that until we return the device. Oh, and another great story about it: On Sunday, I was making cookies and Levi was whining for something when he walked into the kitchen. At first I thought it was chocolate chips, which is wasn't. Then I thought it was Mater, which he threw. I decided to give Levi the device to see if that would help, and he quickly tapped right through the menus saying "I want" "To eat" (then went into the snack sub menu) and chose "cookie". THAT is what we're hoping for more and more of!!

P.S. (Toby, plug your ears) Abby lost another tooth!  The one just to the left of her middle one that she lost. She's got a top one that's barely wiggly now, but she's getting to work on it. She likes loosing these teeth.

Durable Medical Equipment

I am happy to say that we have had a rebound from last week's discouragement!  Saturday we had our first get together with other families with Apraxia in the area and it went really well.  There were members of five families there and while it was a bit crazy with the kids climbing all over the giant tunnel gym, it was so helpful for the parents to chat and compare treatments and progress. One of the moms said it was like a counseling session. :) We plan on getting together again soon!

Yesterday was a very big day for us!  Levi had his usual speech therapy appointment at Munroe Meyer and then right after it was his evaluation for an augmentative device. At first we sort of talked about what my observed concerns and needs were for him, and then we went into a room with toys and devices. The first thing they did was put a device on the table and ask him what he wanted to do. It literally took him no time to get things down. He tapped right on to the cars and they said "Oh, cars? OK! They are right here!" They went on doing a series of things like that, asking him questions and guiding him through the device to respond. Before we knew it, they were asking him "What do you want to do?" and he was tapping things like "car crash" and crashing the car into a block or "crash horse" and crashing the car into a toy horse. There was a monster on the hood of the truck and the specialist added a button for it since he was pointing to the monster so much. I sat across the table and it took everything I had not to start crying. He looked SO HAPPY. The specialist actually mentioned that when Levi tapped and 'said' "I want to play" he looked up with a face so happy and looking like 'I just said that!!'. It was so sweet. Best of all, he was mimicking whatever word he tapped and heard the device say. He actually said "bo" for blow, which is a sound that we had just literally spent a half hour trying to get out of him in speech therapy, but hadn't heard. Not only did he do amazing with the device and catch on with the communication assistance it provided very quickly, but it also was encouraging sounds and word approximations out of him beyond what I ever could of hoped. So, in a word, it went amazing! Levi tried out three different devices and did very well with all of them, but I settled on the one I felt was the best size, light weight, and made in Nebraska, which may save us some hassle. I hope to have pictures soon, but it essentially looks and works like and ipad mini with speakers mounted on the back and a handle on top.

The not as exciting news is that it will most likely be a bit of a battle to get insurance to come through on this. While they should approve it and cover it, they will most likely deny the prior authorization that they require and we will need to appeal, perhaps a few times. There also may be a battle to get the manufacturer considered "in network" for insurance. In theory they should be able to make it happen, but insurance companies can be.... interesting... to work with, and I'm not holding my breath. If it is not considered in network, we will need to cover 20% of the cost. Seeing they way Levi interacted with it, however, we would find a way to pay for it, whatever the cost. It is so exciting! Starting next week we should be able to get a two week trial of the device and then hopefully have our own with the next month or so, depending on how long things go with insurance. With insurance, the device is actually coded under "Durable Medical Equipment", the same categories as wheelchairs and other similar items. It is an odd feeling having a child need such a thing, however we still have so much hope that he will overcome this, perhaps faster than we could ever imagine, and I know that his need of it will be temporary. For the meantime, I'm so thankful that we have it as a tool to help him!  I can't wait to see him communicate in a new way I've never seen!


In other news..... Abby lost her first tooth! It was very exciting and the tooth fairy came, even though the tooth accidentally went down the garbage disposal. Whoops! Abby claims she was a topic of discussion at preschool. Tooth loss envy. #fiveyearoldproblems Our little girl is growing up!