November/December Talker Update

30 words

We love to read with the Talker

amplifier and kickstand

Talker has a strap so that it is more accessible to Kevin

Check out our Talker: we have a case to protect the iPad with a screen keyguard, an amplifier on the back that acts as a kick stand, and a shoulder strap so that Kevin can transport his own Talker. All of these accessories were paid for through a Fund offered through the hospital. We are very appreciative for the financial support and to our therapist for letting us know about it and completing the paperwork.

Kevin now has 30 words available to use on his Talker. We added: 

sad; sleep; play; see; you; me; gift; Christmas; Thanksgiving

One of Kevin’s favorite activities to use the Talker with is reading books. I found some books that repeat words that are on Kevin’s Talker. Kevin’s favorite is: Bear Wants More which is repeated many times throughout the book. I read “But the Bear WANTS…and then I pause and wait for Kevin to finish the sentence by pressing the word MORE. I love it! I love reading together with Kevin. He will sit for long periods of time during a reading session. In fact if there is a stack of books we have to read them all - and sometimes he even gets up to get more books - or one of his favorites that I didn’t bring over. He also loves reading with Grandma and our Tuesday helper. 

Here are some of the other books we read over and over again with the Talker because they have words to use with his Talker: 

Pete the Cat: I Love My White Shoes - LIKE, TURN, RED, BLUE

Polar Bear, Polar Bear, What Do You Hear? - YOU, HEAR

Brown Bear, Brown Bear, What Do You See? - YOU, SEE

Go Dog Go - HELLO, GOOD BYE, LIKE, NOT, GO, STOP, RED, BLUE, GREEN, PLAY, SLEEP

Of course we can use other words on the Talker that aren’t in the book. For example: TURN for turn the page or your TURN to say the word; Colors, Feelings, LIKE, WANT, MORE, ALL DONE, HELP, NOT, STOP, GO

Here are a few of my favorite WOW moments with the Talker.

I made Kevin’s favorite squash soup. After he finished eating a bowl of it I thought he might tell me he wanted MORE but instead he used the Talker to tell me HAPPY - which made this mama very happy!!!

Another favorite moment was when we went to the Holiday Tree Festival with Grandma. This was our first outing with the Talker using the new case and strap. If you’ve ever been with me when we leave the house with Kevin - you know that we do not travel light. As I was gathering all my bags and stuff to go to the car - I happily realized that Kevin could wear the Talker (one less thing for me to carry) and so I strapped it on to him. I love how having the strap on the Talker makes it so much more accessible to him in the car and when he is riding in the stroller. So back to my WOW moment…As we walked in to the Tree Festival a school orchestra was playing Christmas music. After we listened to a couple songs I thought Kevin might say that he wanted to GO and see the Christmas trees but instead he said LIKE - so we stayed to listen to some more beautiful violin and cello music that Kevin liked. 

One significant improvement Kevin has made is when he hits the Firework button on the first screen it takes him to a second screen that includes 4 words to choose from: Thank You; Goodbye; Hello; and All Done. When he first started with this screen - he automatically chose the word Goodbye because it was top and center on the screen. So when I asked him to say Hello to greet a friend he would automatically press GOODBYE instead. Then he started to scan the screen to find the word HELLO at the bottom center of the screen to use. Now he knows automatically where to find it. In fact, this is currently his “go to” word. So we are encouraging him to only use it when appropriate so that he uses all the other words available to him. I am especially proud of him when he uses the word THANK YOU which is found to the left of the screen or ALL DONE found on the right side of the screen.

I'm still doing a lot of modeling on the Talker for Kevin. It's a slow process but his therapists, who we see weekly, are happy with his progress. AAC device users follow typical speech development - using single words for his wants and needs first. So that is why it is so encouraging to see him use HAPPY and LIKE. 

It’s funny now that we have a Talker, I feel like I’m seeing and hearing about more augmentative alternative communication devices. I’m seeing various Facebook posts and videos about friend's own kids or kids in the news. 

I recently read the book, Out of my Mind by Sharon Draper. It’s a young adult fiction novel - about an 11 year old girl who is non verbal and gets a communication device for the first time. 

Another book that I bought but haven’t read yet - Josiah’s Fire by Tahni Cullen. From the Publisher: "Josiah’s Fire is an amazing true story of family, hope, and hearing God’s voice through a speechless boy."

And the new ABC sitcom Speechless. A family of five that includes a high school boy that uses a wheelchair and communication device. The actor has cerebral palsy in real life. 

These are all good ways to expose the world to people who have disabilities and who need to use a communication device. 

Lovey Silly Cousin

Go Indians, Go Steelers

Swimming Smiles

Jungle Book/Trains/Parachute

We found out that Kevin's favorite movie was going to be performed at the local community theater where my family lives. So we went down to visit since we are trying to give Kevin more experiences going to live theater. As it turned out it was a perfect fit for Kevin as it was only a half hour performance with an all children cast. And because it was over much sooner than we expected we went out for ice cream (and Kevin's favorite snacks) afterwards.

The weather was mild that first weekend in November and so Kevin and his cousins were able to use Kevin's birthday gift - parachute! What I loved most about this - was I didn't have to initiate it - the girls got the parachute and Kevin outside and started playing together. I love these kids!

A Happy Thanksgiving and a Sad Goodbye

We have much to be grateful for this year and had a very happy Thanksgiving with my family at their home. As usual, Kevin was very happy and excited to be visiting family. He enjoyed being with Grandee and Pap, his cousins, and the uncles and aunts. We even got to have all the cousins overnight at Grandee & Pap's house. We arrived on Wednesday and had planned to leave on Saturday but ended up leaving on Sunday instead. When it was time to leave Grandee and Pap's house to go home, Kevin was very sad and crying. He has never done this! I've always said that as happy as he is to visit family he has always been equally happy to return home. It's a three and a half hour drive home and Kevin was still crying 20 minutes after leaving my parents house. So I crawled to the back of the car to get his movie player. I was surprised that playing his favorite movie didn't make him happy right away -he did eventually calm down and enjoy his movie but it was sad to see him so upset to leave the family.

This new emotion is happening at other times. He seems to be very sensitive to other people's feelings. If Kevin hears a baby crying in a store - the tears well up in his eyes. As my family, even my young nieces and nephews, will tell you - the tears well up in my eyes easily too - I call them my love tears. I have to be extra careful about this emotion around Kevin now so I don't cause him to get upset. We also saw this happen when we took him to see Beauty and the Beast, he got upset when the actors were acting scared or upset.

I think this is a good thing...that he is showing this new emotion...but I am also wondering if this is the start of adolescence...? Which I am not even ready to think about yet. I'm still waiting for him to achieve childhood milestones...and so it's not easy to think about him progressing to this new stage of life before catching up. I know...I can't stop it...but I'll need time to wrap my head around this and stop the tears from my eyes. For now, I'll just consider this new emotion as progress on his healing journey and be grateful for it.

Orthopedic Update

Orthopedic Doctor A - November 15, 2016

We first heard the word surgery at our initial appointment with Dr. A a year ago. The goal is to improve Kevin’s walking in regards to his left foot which is inverted or rotating in when he walks and a severely hyperextended big toe, which has a constant sore due to rubbing on top of his shoe. His achilles tendon is super tight which prevents his heel from ever touching the floor.

In addition to the foot/heel/toe problems his left hip is subluxed. We are told that this will likely cause him arthritic pain in the future if not corrected. Once corrected this will end up leaving his left leg additionally shorter than the current leg discrepancy that he currently has. The good news is that comparing last years hip x-ray to this year’s - there has been no change - which means it’s not worse and this gives us time to make an informed decision.

November 15, was our second appointment with Dr. A nearly a year later. At the conclusion of our appointment with him we left not feeling very confident. One of the reasons for this was that last year he had recommended surgical procedure X for the achilles heel, which is the most invasive type. Last month when we met with the Spasticity team that orthopedic doctor recommended surgical procedure Y for the achilles heel, which was a little less invasive. During our appointment with Dr. A he agreed with procedure Y (possibly due to a change in Kevin since the last time we saw him). But then later during the appointment, Jon, my husband who is not in the medical field, questioned if surgical procedure Z could be an option and it almost seemed like a light bulb went off and he agreed this would be a good procedure. This along with another disagreement on whether or not to leave the pin in Kevin’s ankle - the orthopedic doctors we have met don’t seem to like these pins and prefer to take them out. But when we questioned whether Kevin’s ankle would collapse in on him after taking the pin out he couldn’t reassure us.

So all in all, we left not feeling very confident about the surgery. I left wondering if this is just the way it is…especially with CP (cerebral palsy) kids. Because it’s a neurological issue in the brain causing the motor output and deformity in the foot and walking. Does the surgeon just not know until he starts the surgery exactly what he is going to do? Which again, does not make me feel very confident and worries me about what we are going to end up with. We felt like Dr. A was just telling us what we wanted to hear. I went home that night not able to talk about it without feeling very emotional and crying. 

So the day after Dr. A’s appointment I called another well known hospital less than an hour away to obtain a second opinion. They advertise next day appointments and we scheduled with Orthopedic Doctor B.

Orthopedic Doctor B - November 21, 2016

We gave Dr. B only the X-ray’s, no doctor notes, so that we could get an unbiased opinion. He recommended surgical procedure Z to the achilles heel - not having any of the previous information that was exchanged in our other doctor appointments. He also recommended a different procedure to fix the hyperextended big toe. 

We also obtained some new information from Dr. B, he told us to not do the hip and foot surgeries together. He said that this will be a very long surgery and was concerned about the surgeon becoming fatigued - after working for 3 hours on his hip and then working for another 3 hours on the multiple procedures for his foot/heel/toe. Not to mention, the added risk for Kevin being under surgery for so long. It will be a long and painful recovery as well. 

We felt Dr. B was more forthcoming with what we should expect and not expect with performing surgery. He said that the purpose of surgery to the foot would be to get it in a better position to have it in an orthopedic brace and prevent the big toe from getting sores from rubbing the top of the shoe. Once he recovered from the foot surgery we could then proceed with the hip surgery about six months later. 

Dr. B will no longer be performing surgery after the end of this year. In regards to his opinion on splitting up the foot and hip surgery - Jon agrees with him, but I see both sides of this decision. I want to do what is best and easiest for Kevin and I’m not so sure about putting him through this twice or likely three times - because after the hip surgery he will likely need surgery again to correct the leg discrepancy. I am wondering if Dr. B as he is ending his surgery days is older and wiser or older and (with respect) possibly tired.

As you can see, this is not an easy decision and we want to take our time to make the best decision for Kevin. Because Dr. B will no longer be doing surgery we have scheduled an appointment with another orthopedic doctor at this alternate clinic. So we will see what his opinion is regarding Kevin’s foot and hip. 

Dr. Nemeh - October 27, 2016

Our appointment with Dr. Nemeh was a week after meeting with the Spasticity team (and before meeting with Dr A and Dr B) when we agreed surgery was our best option for Kevin. I didn’t think I was going to tell Dr. Nemeh that we decided on surgery because last year he had advised against surgery. But I decided to share this information with him and he seemed to agree that this was our best option. 

This was our second visit with the PEMF (Pulsed Electromagnetic Field Therapy) device - using electrical energy to direct a series of magnetic pulses though injured tissue whereby each magnetic pulse induces a tiny electrical signal that stimulates cellular repair. PEMF benefits are increased circulation, enhanced muscle function, decreased inflammation, stress reduction, bone healing, and blood oxygenation.

Not long after our previous appointment and first appointment with PEMF, I had sprained my ankle and kept having problems with it. At this visit, I used the PEMF on my ankle and haven’t experienced any discomfort or tightness since - nearly 2 months later. I have some other areas of my body that I need to work on - and I am hoping will have lasting results as well. I hope Kevin is experiencing the same relief with any daily discomfort he may have in his body.

Upcoming appointments: 

Dec. 13 - Orthopedic Doctor C 

Dec. 15 - Dr Nemeh