Polar Express 2016

"About 800 children and their families received free tickets to ride, including more than 350 patients and their families from Akron Children's Hospital." - Akron Beacon Journal

Kevin received 3 tickets from his therapist. We were happy that our ticket was on a Wednesday so Grandma could join us. After the train ride we had lunch downtown and walked around to see some of the old department store window Christmas displays.

Cuyahoga Valley Scenic Railroad - AKA Polar Express

Here we go

Polar Express Story

Bells & Carols

Welcome to the North Pole

Elves

Santa

Santa

Kevin used his Talker to say HELLO and HAPPY CHRISTMAS to Santa

Christmas Bell from Santa

6 Geese a-Laying

We have a surgeon, a plan, and a date

Orthopedic Doctor G - December 13, 2016

We have a winner.

This was our fourth opinion with an orthopedic doctor regarding Kevin’s surgery on his foot/heel/toe and hip. For the record, two of the four doctors that we saw do not perform surgery. 

We feel comfortable with this doctor. I liked the way he interacted with Kevin. I liked the way he really took his time while he was examining Kevin to determine his surgery recommendations. He never made us feel rushed or time crunched during the appointment. Most importantly, he has a minimalist approach to surgery - only doing what he feels is necessary to help improve Kevin’s walking. Dr. G stated that we would have to be committed to stretching Kevin because he didn’t want to put Kevin through surgery if his achilles tendon and hip were just going to go back to the way it was - of course we are highly committed to helping Kevin any way we can.

Taking that minimalist approach, he recommended the Z procedure on the achilles heel tendon.This is the least invasive cut that Jon had suggested to the other surgeon. This procedure will allow his heel to finally touch the ground which will greatly improve Kevin’s walking. For Kevin’s big toe that is contracted and has a permanent sore on top the doctor recommended a fusion procedure. Dr. G feels that no further surgery is necessary for the foot. The other doctors had wanted to shorten and lengthen the sides of his foot to help straighten it - Dr. G thinks that by simply getting Kevin’s heel down will correct the pulling in. The other doctors had also wanted to take out the pin in Kevin’s ankle - Dr G says if it’s not broke…or in the case bothering him….then don’t fix it. Dr G recommends to do the achilles and toe surgery first. After Kevin is recovered we will proceed with the left hip surgery. Even though the hip is not causing Kevin any pain at this time, it will be an easier surgery if it's done before the growth plate in his hip closes. If for some reason after the achilles tendon and toe surgery we discover that Kevin does need the extra surgery to correct his foot then we can do that at the time of the hip surgery.

We are scheduled to have the achilles tendon and big toe surgery on January 16, 2017. This will be a much less intense surgery compared to having everything at once. Kevin will have a knee high cast on his left leg. He will be non weight bearing for 4-6 weeks. Total recovery time is estimated to be about 3-4 months. Once he begins walking again after the surgery he will likely need lift adjustments to his shoes due to his left leg being shorter than the right. Later in the year, possibly summer, we will go ahead with the second phase of surgery on Kevin’s left hip. The hip surgery will be a more intense surgery and he will likely be casted with bar between legs.

I felt calm during our appointment with Dr. G until he left and his assistant came in to schedule the surgery. Then it got real. But I do feel comfortable and at peace with this plan for Kevin. 

Last month, I had the opportunity to hear Dr. Gianna Emanuela Molla, from Italy, speak at our church. Dr. Gianna is the daughter of Saint Gianna Molla - who is a patron saint for mothers and was a pediatrician doctor herself. Dr. Gianna says that her Saint Mom is a saint of everyday life. Learning about Saint Gianna's life and faith has been a blessing to me as we make these difficult decision regarding Kevin. 
And a big thanks to my own mama - who always knows the right thing to say to bring me peace. 

Dr. Gianna Emanuela Molla - November 10, 2016

hear want hello play want turn

We were at the nursing home visiting our new friend in her room. As I was telling Ms. J about Kevin's new music therapy I realized that Kevin was using his Talker. Fortunately the top of the screen shows the words. When I looked at the words I instantly knew what he wanted to hear and play and wanted a turn with - Ms. J has a keyboard in her room. Kevin wanted to play it! And he did! Proud Mama moment! I also like the HELLO thrown in there too...Hello, I'm talking to you here. 

Music Therapy

The music therapist at the nursing home we are volunteering at was able to recommend a music therapist that she knows for Kevin. The therapy sessions are in our home. We had our initial assessment on November 17 and have had two therapy sessions. 

Music therapy is something I’ve thought about trying for a while - so I am very excited for this opportunity. Kevin loves music - listening to music, playing the piano in our house, and recently we discovered that he likes playing the drums at church. All of Kevin’s favorite movies and tv shows have music as a major theme (Sesame Street, Thomas the Train, Little Einsteins, and of course Disney movies).

I am very impressed with how well the therapist understands how to communicate with Kevin who is nonverbal. She provides many alternative ways for Kevin to make choices. When given two choices I have even seen Kevin pick the left choice (he usually picks the right side). This is also another opportunity to use his Talker to communicate. Kevin is given the choice to do MORE or ALL DONE with an instrument. And like when we read books, he can use the Talker to "sing" HELLO or GOODBYE in the Hello and Goodbye songs. 

At our last session (which was his third meeting) Kevin put his spoon down (a comfort and visual stimulating object) and didn’t pick it up until the session was over. This is big! I also noticed that he used the drum mallet more purposefully instead of using it to flip in front of his eyes for visual stimulation. His attention span was a bit longer with the instruments during this last session too. 

The photos below show Kevin's interest and eye contact with the therapist. 

November/December Update

Walking in November

Dance Group

We have continued to participate in the dance class even though Kevin often resists. The class only meets the second and fourth week of the month and so I have felt like it may take longer for him to get comfortable with this activity. I pursue it because it involves music - one of his favorite things, and it is good opportunity for movement and social aspects. The holiday recital is coming up and this week we had rehearsal at the location for the recital (which is not in the hospital but at the public library - one of Kevin's favorite places). I wasn't sure how he would do being on stage with the lights and loud music - but he did great! He did not resist being there at all - possibly because it wasn't in the hospital. And the best part was he had a helper instead of me. I sat in the audience and watched the rehearsal instead of helping him with this movements. He did awesome! I'm so proud of him. I'm hoping that when we resume regular classes he won't be so resistant to being there. Not a bad idea to provide something fun to do at the hospital for these kiddos.

Kevin is using the ribbon stick near the brick wall in the center of the photo

Kevin's holding the parachute on the green/red

Volunteering at Nursing Home

Kevin is getting more comfortable with our visits to the nursing home. He has made some new friends and one of the lady resident's likes to save him a seat next to her. When we arrive we help pass the Daily Happenings. Kevin knocks on the door and hands the paper to the resident and sometimes says HELLO on the his Talker.  When it's time to gather for the activity, we stay in the room to greet the residents as they arrive and pass out song books. The first activity is Songs of Faith, which includes hymns and prayers. Then we move on to some chair exercises - which Kevin basically just watches - sometimes he will stretch his arms up and down. The last part is his favorite because it is the fun sing a long songs that the music therapist and volunteer play with guitars. This usually makes Kevin smile and sometimes makes his happy sounds!

One last note: 
Kevin's gulping has increased pretty significantly again. Not sure why, but just wanted to make a note of it in case I can find a reason. Although, this time...I can tell him "no gulping" and he will stop for a little bit and more importantly doesn't get mad because I told him to stop. 

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