Tuesday, October 25, 2016

The Talker

Here's a look at Kevin's Talker using the LAMP Words for Life 

Kevin is currently using 21 words
thank you; good-bye; hello; all done; 
like; happy; mad; more; stop; 
want; go; red; green; blue; help; 
hear; not; eat; birthday; happy birthday; turn

To say the word EAT
First screen - tap the apple icon to get access the second screen

Second screen- tap the picture icon to say EAT

To say the word HELLO

First screen - tap the firework icon to access the second screen

Second screen - tap the phone picture icon to say HELLO

This is the full version with 84 core words on the first screen and a total of 3,000+ words 
 on two additional screens available on each word from the first screen.

To say the word PUMPKIN

First screen - tap the apple icon to access the words for food or eat

Second screen - tap the fruit picture icon to access the words for fruit

Third screen - tap the picture of the pumpkin to say the word PUMPKIN

Buckeye Invitational - October 15, 2016

We met my family at The Buckeye Invitational to watch my nephew's high school marching band compete in The Horseshoe at OSU. We also got to see a friend perform with his high school band and I even saw my alma mater perform their show. It brought back a lot of memories for me and Kevin enjoyed it all - being with the family and watching the bands. Despite being in a 100,000 seat stadium, my nephew didn't have any problem finding our clan in the stands waving our yellow Steelers towels - so he wouldn't miss us. 

Picnic dinner outside the stadium


The night ended with an unforgettable performance by The Ohio State University Marching Band. The all-brass and percussion band, the ramp entrance, the drum major with the back bend, a baseball themed show - Go Tribe, and the famous Script Ohio. WOW!

Surgery Fears and Healing Thoughts

A few of my fears regarding surgery are: 
1.) Surgery in general and all that goes with it.
2.) Kevin not being able to communicate when something is wrong. I’m also thinking about once he’s home and not able to move around to communicate what he wants or needs as he does now.
3.) I don’t want Kevin to lose the walking ability he currently has and I want his walking quality and distance to improve greatly. I want the surgery to be effective.

I found that I needed to be specific about my fears to help prevent myself from snowballing my fears. The first fear is out of my control. I try to not even think about it in details because there is nothing I can do, it is in God’s hands. The surgeon is highly recommended by my CP mom friends and I am comfortable with that. One of my friends, has a daughter the same age as Kevin with CP, she is having a very similar surgery with the same surgeon in a few weeks. The second fear is why we pursued getting a communication device which is where most of my time and attention is at this moment. I am very pleased with the speech and occupational therapist that we have been working with and I know they will help us make a Talker out of Kevin. The third fear, I just have to remember, all will be well. We know how to be dedicated to a therapy program that will help Kevin recover from surgery. 

Last December, was when we met the orthopedic doctor and that was when we first received the information about surgery. We had gone to this appointment seeking a brace to help Kevin’s walking and were unprepared for the aggressive surgery that was his solution instead. Being back in the hospital that day for the orthopedic appointment and receiving the news that Kevin needed surgery was very emotional for me. Since then, Kevin and I have had ample opportunities to adjust to being at the hospital again for various appointments, therapies, and even a fun dance class.

After the December appointment, we determined there was no hurry and decided to try a few other options first before agreeing to surgery. We immediately began working with a physical therapist and got Kevin going with an orthotic brace. The brace has improved his walking to some degree because his foot is finally supported in the unnatural position it is in. It was no longer painful to watch him walk (only when he walks barefoot do I cringe and fear he will fall). We also had a 6 week session of aquatic therapy and continue to use the lessons learned in swimming on our own. He wears the mollie suit and walks in it 3 times a week. We also began seeing a physiatrist, his job is to try to find ways to avoid surgery and he was out of ideas for Kevin. Add to that list, the past decade with the brain experts in Philadelphia who taught us how to get Kevin walking and then trying their best to improve Kevin’s walking for the last several years - and it seems we are out of ideas. We felt meeting with the spasticity clinic team would be our last effort before making this final decision. We feel pretty confident that we have exhausted all other options to avoid surgery before waiting too long and Kevin develops physical pain from these issues.

I feel assured that Kevin’s journey with FHC and IAHP was the right path for us. I don’t feel he would have ever achieved the level of walking he does possess without the intense and dedicated program we have done with Kevin for a decade of his life. I was pleased to hear some team members of the spasticity clinic agree to that thought.

Months ago, I had scheduled and rescheduled the spasticity clinic appointment twice before I finally felt it was time. We were first scheduled in the spring and then early summer, which I felt was too soon. In order for me to be convinced that this was the right path, I needed to give Kevin ample time with therapy and his orthotic brace. Not to mention he was really sick on one of the previous scheduled days - so we would have had to cancel anyway. 

Another part of this new path was discovering AAC (augmentative and alternative communication) therapy. This was also a long process - filling out the paperwork in February to get an appointment in May and then patiently waiting until August to find out that our insurance company denied coverage of a communication device to finding our way to our current device that we paid for out of pocket that we finally got started with a month ago. For me to be comfortable with the upcoming surgery we will focus nearly all our attention on getting Kevin to effectively communicate with his Talker.

Having been with our brain experts in Philadelphia (FHC and IAHP) for a decade and Dr. Nemeh we have trusted their knowledge and it can be difficult to put your trust in someone else (who you just met) who wants to do surgery when we’ve been told for a decade no surgery. So we needed this year to determine for ourselves that this is the path we need to take for Kevin. I’m still scared but am feeling more comfortable with the decision - which will probably waver back and forth once we set the surgery date. 

I have been trying my best to rely on my faith to give me the peace I need for this big decision. 

A healing service with Frank Kelley (from Boston) was offered at a local church the evening before the spasticity clinic appointment. I have been to a few healing services and have always taken Kevin with me. I usually find that I get more out of the healing than (I think) Kevin does - not physical healing but spiritual. So I decided this is just what I needed to prepare me for the appointment with the spasticity clinic the following day. 

During my individual prayer with Frank Kelley, he told me to pray for the intercession of specific saints and I was also given a scripture verse. 
I was given:
St. Thomas Aquinas to heal a memory
St. Ignatius of Loyola for discernment
St. Gregory the Great for wisdom 
St. Anselm for understanding
Psalm 146 - to understand my instructions and to get the peace I need to have while I’m praying
The footnote for Psalm 146 says: A hymn of someone who has learned there is no other source of strength except the merciful God. Only God, not mortal human beings, can help vulnerable and oppressed people. 

The morning after the healing service, the day of the spasticity clinic, this was the reflection in Jesus Calling book on October 18:
“Go gently through this day, keeping your eyes on Me. I will open up the way before you, as you take steps of trust along your path. Sometimes the way before you appears to be blocked. If you focus on the obstacle or search for a way around it, you will probably go off course. Instead focus on Me, the Shepherd who is leading you along your life-journey. Before you know it, the “obstacle” will be behind you and you will hardly know how you passed through it. 
That is the secret of success in My kingdom. Although, you remain aware of the visible world around you, your primary awareness is of Me. When the road before you looks rocky, you can trust Me to get you through that rough patch. My Presence enables you to face each day with confidence.”

I am trusting, that this decision is the right direction we need to take with Kevin. I trust that all will be well. And I trust that when all is said and done, I will look back and know we made the right choice. And possibly one day, as it says in the reflection quoted above, “Kevin (and I) will hardly know how he (I) passed through it.” Jesus, I trust in You.

Thanks for reading my thoughts and when (not if) you hear me getting fearful - please remind me that all will be well and to reread this post.

Upcoming appointments
Dr. Nemeh, October 27
Orthopedic, November 15

No surgery date yet

Spasticity Clinic Team Meeting - October 18, 2016

Jon and I met with seven team members in the same room with Kevin to discuss how to improve his walking. Finally, a productive way to make a decision when many opinions are needed. A physiatrist, orthopedic, physical therapist, occupational therapist, psychologist, nurse, and the clinic coordinator. Everyone was in agreement that Kevin needs to have surgery on his left hip, foot, and ankle. Sigh. We knew this was coming. Gulp. We agree. Deep breath.

The team assured us that this is the right time to do the surgery. If the surgery had been done when Kevin was younger, he would have likely needed surgery again due to his physical growth. If we wait until he is much older, his recovery will be slower and more difficult. The X-ray shows that Kevin’s left hip is out of socket. This is the reason (or some of the reason) that he turns his left foot in when walking. It was explained to us that if his hip is not corrected Kevin will likely develop pain and arthritis. Once the hip is corrected, it is our understanding that it is unlikely the hip will slip out again. Some of Kevin’s other issues to be corrected by surgery: a very tight achilles heel tendon that needs lengthened (and some other muscles that attribute to pulling the foot in while walking); the arch in his left foot is very tight; a contracted big toe; and they also want to remove the pin that was placed in his left ankle in April 2014 - they said that this could be attributing to the further spasticity/contracture/tightness in the foot and ankle and they are concerned that possible debris from the pin could eventually cause further aggravation. They did make a few positive comments referring to Kevin’s spine and leg bones were straight. 

The information we have at this time is that this will be a long surgery. He will be non-weight bearing for a month. And he will require intense all day therapy for three months after the surgery. 

One of our big concerns is that even after the surgery, Kevin’s brain will continue to tell him to pull his foot in while walking. But we are told without surgery, the tendons will continue to shorten, the bones will become twisted, and arthritis will set in his hip and foot if it is not corrected. 

We do not have a surgery date yet. The next step is to meet with the orthopedic surgeon (the same doctor that we saw last December). It is unlikely that we will be able to schedule the surgery before the end of this year.

Sunday, October 9, 2016

Garbage Truck Days

Our Friday walks take longer when Kevin gets to watch the garbage trucks.

This is often the view of Kevin while he waits for the truck to catch up to us

5 Cousins = 1 band + 3 soccer + 1 cross country

We got to spend my birthday visiting my family for a long weekend. Spending time with family is always my favorite way to celebrate.

We got to see all the cousins in their fall activities.

Ryan plays the trumpet in marching band



Ryan, Emma, Sara (missed her soccer picture)

New Park with Grandee

Train Chasers

We became train chasers following this visiting historic steam engine No. 767 
as it was chuffing through the Cuyahoga Valley National Park

Kevin & I watched from the car
while Dad stood outside in the rain to get pictures

Following the steam in CVNP
Waiting for the Train!
Kevin & I visited our neighborhood train expert
to watch his really cool train video of the steam engine

Labor Day Weekend

Grandee & Pap came to visit for a long weekend. We love sharing some of our favorite places with them - especially the wineries. Jon got to show Pap and Grandee his model train which is up at his Mom's house. It was a nice evening and we had a picnic at Blossom while the Cleveland orchestra played live to the movie Indiana Jones. Good Times!

Pap made some carvings
on Kevin's VBS walking stick