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.
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!
If you know me very well, hopefully you consider me to be someone who keeps things real. I don't mean that in a prideful way, but in more of a "here I am, take me or leave me" kind of way. An example, I now have a very lovely scar on the right side of my head/neck that is rather exposed when I wear my hair in a ponytail. I don't like it and I wish it was much less prominent than it is, but I don't have the time, energy or care to cover it and pretend like the surgery never happened. It did, I have a scar, and take it or leave it this is my neck now. (Scarfs do come in handy when I'm having moments of feeling self-conscious, however). So, on that note, things have been harder here with Levi lately, particularly for me, and I'd like to ask for some prayer if you happen to think of us. I posted a video a few weeks ago of him pointing out the window and telling me a story that I never did figure out. Well, this is pretty much a daily occurrence here lately. I can't tell you how hard it is to be a mom and have a child so desperately trying to communicate something to you and feel like you of all people should be able to understand what he's saying, but not be able to. He tells me stories, comes and asks for things, tells me jokes, but it all is done using one or two vowel sounds. He knows exactly what he's saying, but his mouth isn't able to form the words. It's heartbreaking, really. Particularly as his mom. So, if you think of it, pray for me and us in this area.
As things have gotten harder with him, I have gotten more concerned and am becoming more aggressive with how to help him. After some resistance that I don't feel it's probably helpful to go into detail about, I have finally found a path to have Levi evaluated for an augmentative communication device. The hospital that we take him to twice a week for therapy agreed that it would be very helpful for him to have. This does not mean that we are giving up with him speaking, but more accepting the reality that there is a long road ahead of us. There are a few key benefits of him having the device. 1) It will keep him communicating. I really am afraid of Levi withdrawing more and more out of frustration from not being understand. When no one understands you, soon enough we all would quit trying. Having him be able to communicate in a way that he is understood would be so amazing for him. It brings me to tears to think of all the things he has in there to say that I've never heard! I can't wait to get to know Levi in a whole new way!!! 2) He will be able to hear the sounds of the things he's saying. There are some sounds he knows that doesn't use, and I'm hoping and praying that by using a device to say "dada" he himself with remember, oh, I could say that! and use the sounds he has. Speaking is very hard for him, so I think he's gotten a bit lazy from using sounds that he can do just because of the challenge. Hopefully when he sees the power that these words will have for him, he will be more motivated to try harder. 3) The outside world will be able to understand him. People aren't really sure what to do with Levi. He talks to people all of the time, but they either end up looking to me, or get embarrassed and turn away, or tell him they're sorry, they just don't understand him. I'm hoping this will keep him interacting with the world and keep people interacting back with him! (On a side note, if you are one of these people in this situation, talk back to him. If he's pointing at a picture, name and discuss what he's looking at. If he's pointing out the window, discuss back what you see. If he seems like he's asking for help, ask him to show you what he wants. I know it's a bit awkward sometimes, but hopefully knowing how to respond will make it less awkward.) Praise God, we have found out that our insurance will cover a device for him 100% (they can cost up to $7000!) and this coming Monday he will be able to play with some of the options out there and hopefully we can get a feel for which direction to go. There are literally dozens of devices to choose from, so praying the right one for him becomes obvious! I will explain more about the device once we have one chosen.
I cannot look at this picture without laughing. :)
A few other things I'm working towards doing for us is getting us as a family into a community where we are able to relate. About a month ago I started calling around to try and connect with people in the area who also had Apraxic kids. After a week of phone calls calling the national Apraxia association, local special education non-profits, school district case workers, and asking speech therapists, I came out with zero contacts in our area. The only person who knew of anyone in our area with anything close to Apraxia is his speech therapist at the hospital, but he knew of no group or community to become involved in. However, a few weeks ago I was able to track down a national Apraxia social group on facebook and through that, connect with a few parents in the area. It was amazing! We are actually going to get together this Saturday night with all of our kids and I am so excited to be able to interact with other families on a similar road, to compare notes and be able to see other kids with Apraxia in action. I am even more excited for Levi to be able to go up and "talk" to these other kids and not feel out of place. Perhaps he will even feel understood.
Ok, so, thus endeth my blog counseling session. I feel like it's important to say, not only for me to be able to look back on, but also for the other people out there who maybe stumble upon this and are in a similar situation. Hopefully it's also helpful for those who just care and love our family and are looking for specific ways to pray. We appreciate your prayers and support! This road isn't the easiest, but Levi is so very worth it!
Last week, we went to Disney World! A few months ago Brian and I were talking about investing in making family memories. We have gone on a few trips with our extended families on both sides, but we had never as our own little family planned and gone on our own extended vacation (more than two nights). It always seems like a "waste" of money to go on vacation, but we had read an article by C.J. Mahaney (I think that's who it was) on investing in creating positive family memories and bonding time and the indefinite value that brings and it got us excited about the idea of doing it ourselves. So, after a stressful Thanksgiving, it was definitely time to have a fun trip on the horizon. We decided to surprise our kids with a Christmas present trip to Disney World! I think we were just as excited as they were. We also invited along the grandparents and we were even more excited when both sets could come with us for part of the trip. After we had planned the vacation, my tumor and the surprise surgery came about and it seemed for a while that the trip would have to be cancelled, BUT GOD opened up a quick appointment and surgery date so ended up having enough recovery time to still be able to go. Praise God! With all of the flu going around and unpredictable weather, I was nervous that our careful planning would be spoiled, but that wasn't the case at all. We were all healthy, grandparents included, and the weather was absolutely amazing. All this to say, we had an amazing time and definitely felt it was a worthwhile investment in our family. The kids were on cloud nine the entire time and still talk about it like it was a dream and Brian and I now deem it as our favorite family trip. It was such a special time for our family and something we all will always remember. I see more "investments" happening in the future...
The pictures are a bit out of order, but it is a pain to reorganize, so I'll just comment on them as they are. This is our first view of the castle on our first night. It really is it's own "world".
The first ride we went on was the safari in Animal Kingdom. Those are hippos in the background.
Abby insisted on going on Expedition Everest with me, which was crazy, because it is a bit of a scary ride. Her face in this picture says it all, although she claims that she liked it, but doesn't want to do it again. :)
We did A LOT of meeting characters, as the kids were very in to it. We met every princess except for Tiana and the kids autograph books are full! Here's Levi with Ariel. He even got a kiss!
Abby's turn with her favorite princess.
This was actually the second Sleeping Beauty (Princess Aurora) that Abby met.
The castle all lit up.
We had lunch in Epcot with five of the princesses, Belle being one.
Snow White, of course.
The princesses had all the kids do a princess parade where they walked and waived. Abby brought along Pascal.
The first Cinderella we met.
The first Sleeping Beauty we met. I don't think Abby noticed the difference. :)
Rapunzel! Abby really had hoped to be able to meet her and it was worth the wait.
This is from dinner the first night. Levi loved meeting all of the characters. It was so cute.
Kenai and Baloo from Jungle Book.
Chip and Dale
The first princess Abby met, Pocahontas. Jonah was confused why her skin wasn't darker. :) Maybe they should give Pocahontas a spray tan.
One of the Donalds they met.
Levi in line to meet Goofy and Pluto, the first characters he met.
Nice pants Goofy!
Can you see DiVine in this picture?
Mulan
They kids really did so well, even though the days were tiring. We rented a double stroller and I was glad we did! Abby needed breaks sometimes too.
A big moment for Levi, meeting Lightening McQueen and his very favorite, Mater.
At the Lego store. Abby's pose cracked me up.
Levi had one roller coaster that he was tall enough for, Barnstormer, and he LOVED it. We went on it three times and he giggled and squealed every time. It is one of my favorite memories from the trip.
I love this pic of my loves on the Teacups with me.
Meeting Merida! This was our longest line of the trip, but it had to be done in Abby's opinion.
Our second Cinderella.
We also met some Disney Jr. characters. Here's Handy Manny.
June from Little Einsteins.
Jake from Jake and the Neverland Pirates.
All of the kids got tattoos. Levi of course chose Mater.
My personal favorites, Phineas and Ferb. That show cracks me up. I think they were Jonah's favorites too.
The Green Army Guy was fun to meet, except he wouldn't smile! :)
Abby, Levi, and Grandpa got to play parts in Storytime with Belle. Grandpa was the Knight.
Here they are with Belle #2.
We went to the car stunt show at Hollywood Studios and to our surprise Lightening McQueen was in part of it! It was fun because he actually drove around. I wish they had a Mater!
The last day there for us the Grandparents were gone and we ate at Chef Mickeys. We met Goofy again.
And Pluto, who Abby said is soooo soft.
Donald again.
This was our view from our table at the restaurant. We were the only ones in the restaurant with this view and it really was magical!
Minnie!
And Levi's very very favorite of all and the last character we met, Mickey. Jonah liked meeting him a lot too. It really was perfect to eat there on the last day.
Riding the Magic Carpets (formerly known by Jonah as the magic blankie ride) while Abby waited in line to meet...
Jasmine and Aladdin. This guy really was a perfect Aladdin. They were pretty funny too.
We ended up trip by watching the Wishes fireworks show at the Magic Kingdom. It was really beautiful and the perfect ending to our trip. The kids were in awe.
They showed a 10 minute movie on the castle and it was incredible! I think it was the coolest thing we saw on the trip in my opinion. I have a clip of it below. This picture is when they projected to make the castle look like a castle in Brave.
I absolutely love this picture of Jonah. It captures how excited they all were. So fun!!
The last ride we went of was A Small World. Levi, the thrill seeker, was raising his hands to add to the drama.
What a fun vacation! We are so thankful that we had the opportunity to go and already cherish the memories.
