Friday, November 10, 2017

October Update

The Orthopedic surgeon said Kevin's hip has healed well during our visit with him on September 22. Our only concern is that Kevin's left leg was shorter than the right before the hip surgery and we knew the surgery would cause a greater discrepancy, it's now about 1-1/2 inches shorter. Kevin wears the AFO brace on his left foot with the shoe lifted for the height difference...but it makes walking without his one pair of shoes unstable. His right leg will continue to grow faster than the left. We plan to have another x-ray at the end of the year to discuss further.

On October 5 we had a visit with the Physiatrist doctor and he showed me the video they took of Kevin a year ago for the Spasticity Clinic. There is no doubt that both surgeries this year and the rehab have had a profound positive effect on Kevin's walking. It was a good reminder for me of what Kevin's walking looked like before the surgeries. He is still turning in his left foot when walking but after seeing the video it only looks like a slight turn in compared to last year's walking video.

Kevin is definatley stronger and more comfortable walking. Before surgery, I always used the stroller to take him into the hospital for any therapy or doctor he walks from the parking garage to anywhere we need to go in the hospital...even if we have two appointments on opposite wings of the hospital. I've even taken him into big box stores like Target with no problem. I can't be in a hurry...because his walking isn't fast unless he's really motivated but I love this new freedom. Before the surgery, we used the stroller because I wasn't comfortable asking him to walk much distance and another reason was his behavior...but now I'm wondering if the bad behavior was his way of communicating that it didn't feel good to walk that distance.

One of the physical therapist's that we worked with regularly in in-patient rehab was able to get Kevin on her outpatient schedule after a month of filling in with other therapists. She was able to see a significant difference in Kevin's strength after that first month we were in outpatient rehab.

We are also working with one of the occupational therapist's that was regularly seeing Kevin during in-patient rehab. Last week, Kevin was casted on his left arm and hand to begin serial casting for neutral supination and position the thumb for pinch grasp...but it was not successful and we had to remove the cast by the end of the first day due to swelling. I'm a little disappointed we won't be able to try this treatment approach but Kevin will be thrilled that we can continue swimming at the pool this month.

Our weekly schedule includes Physical Therapy, Occupational Therapy, Speech Therapy, Music Therapy, Art Therapy, Pool Therapy, and Dance. His pool therapy sessions ended in mid October but I continue to take him to our local therapy pool and see great benefits in the work we do in the water...not to mention he loves it. Kevin is always excited to go outside to walk or ride his trike bike. I have been impressed that he is cooperating well with any therapy exercises I do at home with him including creeping. Kevin continues to enjoy his busy learning days with Grandma.

The toilet training is going very well. He is still wearing pull-up briefs with extra padding...but I did buy him some underwear during our trip to Target to have on hand. I have to tell Kevin it's time to go to the bathroom but he always willingly goes and just needs some light supervision. A couple weeks ago, I was busy working on the computer and phone and time got away from me. Kevin went to his Talker and said BATHROOM...I immediately jumped up to take him. Unfortunately, it was too late and he was wet but this is a good thing that he used his Talker to tell me. After he peed on the toilet and I got him changed he verbally said YAY! I am very pleased with Kevin's progress, it's much easier than I anticipated. I am also surprised with how much easier it is when we are out of the house and traveling.

Some people are surprised to find out that Kevin is not always his happy smiling self...and that he does get upset. It doesn't happen often but when something is out of routine or when he has something in his can take Kevin a long time to calm himself when he gets upset. I normally get the brunt of it.

After Kevin was home from in-patient hospital rehab and we had to go to the hospital for outpatient rehab...he was not happy about going back. He was really upset that I was driving him back to the hospital and didn't understand that we weren't staying. He was sitting behind me and grabbing me, it was so bad that I had to pull over and move him to the other side of the car. Luckily, he trusts me now and knows that we are coming home afterwards.

Another day, when we arrived for one of our therapy appointments I had to take him to the bathroom and by the time we were done his therapist was ready for him...which meant no time in the waiting room. Normally he is allowed to play music on my phone while we wait but he didn't get the opportunity on this day. He was really upset over this and was taking it out on me and the therapist.

Then there was a recent incident at our local therapy pool. He likes those things that look like a hand weight but it floats in the water...he uses it to lift up out of the water and watch the water drip off of it. I told him to put it on the side of the pool while he did some laps kicking. He was ok but kept a hawk eye on that hand weight so he could get it back when we were done. Well, it just so happened that all the ladies that were in the pool at that time decided to pick up all the remaining hand weights to use...including the one he had been using. Another melt down.

The first morning of the time change, we went to church and decided to go out for breakfast. It turned out to be a long wait. I was holding my breath if Kevin would cooperate and wait. He did for about 15 minutes...then he used his Talker to say EAT, STORE (which I think meant restaurant), EAT, HOUSE (which I think meant lets go home and eat). We were at that point where it might be faster if we just continued to wait but then Kevin got aggressive and we had to leave. I thought there was a slight improvement with his waiting for 15 minutes...of course he had the ceiling fans spinning that may have helped. When I realized what time it was without the time change and how hungry he must have been I felt bad that we made him wait so long. But he got a time out for the aggressive behavior.

On October 24, Kevin started back on the biomedical program that we stopped before his June surgery. I considered stopping it altogether but then began seeing signs that we should resume.  

We had a visit with Dr. Nemeh on October 20. His testing and treatment indicated that Kevin was receiving greater blood flow to his brain which is a good thing. I sometimes feel confused about our visits with Dr. Nemeh because he is known as a healer. When I hear the word healer I think of a big physical change but I also know that healing's come in many ways. The day before our visit I received my answer from God. The day's reflection was on the verse "My soul waits for the Lord". And just in case, I was going to ignore it God answered me again when Kevin and I watched a Thomas the Train show and the first thing Percy said was "I don't like waiting. Really useful engines huff and puff." (Really useful Mom's search and do, search and do). Cranky the Crane (don't let the name fool ya) replied "Really useful engines learn to wait." (Really useful Mom's trust in God no matter how long it takes). I chuckled with God and this made me go back to the day's reflection and do the writing exercise they suggested. Lord, I will wait and trust to see what you will do. This renews my hope! Dr. Nemeh's office is filled with many reminders of God and this one was in the bathroom.

Friday, November 3, 2017

Kickin' It with Music

Watch the video
"Kick the Tambourine" 

While Kevin was in inpatient rehab his music therapist was getting some extra neurologic training. This type of music therapy is benefitting Kevin with some of his exercises that we are working on in physical and occupational therapy. She has collaborated with Kevin's therapists and come up with some fun and creative ways to disguise music around his exercise therapy. We often use the parachute and a big stretchy band to work on gross motor skills and she's getting him to work extra hard reaching up and over to strum or bang instruments. I even captured a photo of him initiating using his left hand to play the piano. And she always makes a great effort at modeling and using his Talker with Kevin during his sessions.

OFF HAIR and other Talker Wow Moments

This might be my favorite Talker moment of all time! 

September 20, 2017
Kevin's music therapist arrived for our first session after we returned home from our long rehab stay. We were surprised to see that she had her hair cut short. The first thing Kevin said to her on his Talker was OFF HAIR. I love it!!!

September 26, 2017
It was my birthday and a very busy day. We started the day at the pool at 8AM, it was Grandma day and out to lunch with her, later in the afternoon art and dance at the hospital, dinner out with Dad, and finally at the end of the day we were watching family favorite Wheel of Fortune. As soon as the bonus round was done Kevin said FAST BED. I'm not sure if he meant: Fast forward to the end of the show so I can go to bed; or Get me to bed fast you wore me out today. Either way, we both went to bed.

September 27, 2017
On Wednesday evenings, I attend a book club at my church. Normally, as soon as Jon arrives home I need to leave for my class. But on this particular Wednesday Jon arrived home a little early. The three of us were sitting on the porch and Kevin said GO CHURCH BOOK. HaHaHa, yes it was almost time for me to go to my class...or he was just trying to get rid of me so he could have his Dad time. 

October 18, 2017
Here's a really creative Talker moment. The music therapist had her melodic instrument out to play. She asked Kevin what she needed to do...anticipating that he would say PLAY on his Talker. Instead he said SLOW...which we both immediately understood that it was his creative way of saying Blow (we don't have the word blow on the Talker). When I took a training course for his language program, I learned that kids will find creative ways to say words on their Talker that they may not have available. Blow is often the word she would use when playing this instrument. I love it!

October 25, 2017
First time Kevin initiated and independently said BATHROOM on his Talker since we've been home from hospital and started toilet training. 

Kevin's favorite Talker words during the month of September and October
DOG/ SHEEP DOG - Every time we went back to the hospital for outpatient therapy Kevin said DOG...he really likes those therapy dogs. Then he began to consistently say SHEEP DOG every time. I don't believe we every met a sheep dog at the hospital but we did spend time with a white dog with three legs. Maybe he felt a special connection to this dog. I wish I knew for sure what he meant by sheep dog. He has been pretty persistent with it. 

MUSIC/ NEW MUSIC - This was a word he worked on in therapy and quickly became very good at using around the house. Then he added NEW MUSIC. I finally had to ask for suggestions for new music from his music therapist and dance teacher. I added a new music playlist and now he just says MUSIC so he must be satisfied with the new music selections. The other neat thing is that this is a big motivator for Kevin and he will make the effort to get his Talker and bring it to me to tell me he wants to listen to music. He does this a lot!

I received this message from Kevin's Speech Therapist during a week when it was really uplifting to hear something positive.
"I want to make sure you know how much of Kevin’s progress is really thanks to you and your dedication to him and his new language system. I have yet to meet such a dedicated parent – Kevin is so lucky to have a mother who is so dedicated to helping him learn to communicate. He will continue to learn, grow, and become more and more of an independent communicator because of you."

Take a Bite

On Grandma Day, Kevin and I often like to share a meal with her before she heads back home. A favorite place we like to dine at is the Cafe at Mustard Seed Market, a health food store. I always bring Kevin's meals with us when we eat out, but at the Cafe I've checked and double checked that the sweet potato fries are safe for Kevin. So he usually gets the fries as a treat when we eat at the cafe. But every time, we have to tell him to "take a bite" or "bite it off". He couldn't get the concept of taking a bite off the fry instead of shoving the whole thing in his mouth. Same thing when eating a banana. These are treat foods and there aren't many foods that Kevin got to practice this technique on but for some reason on this particular day...17 days after his 13th birthday (Grandpa H.'s birthday)...he picked up a fry and took a bite. I think I'm liking this teen thing!

A Happy Super Hero Halloween

I found out at the beginning of the session that Kevin's dance class was going to have a costume and treat class for Halloween. We haven't participated in costumes and treats for years. Kevin never got into it and neither did I...but we must be growing up because this year we did! Aunt Marcia helped plan the costume. Borrowing the red cape from one of their past costumes and printing a Super K for his t-shrit. Aunt Dawn came up with a Kevin-friendly treat...pumpkin faced clementine oranges. I was surprised that Kevin wasn't bothered wearing the cape around his neck and he seemed to really like it! During treats at dance he even asked for an ORANGE on his Talker. 

Thriller Dance Party

Our friend asked us to join her at her super-hero themed trunk or treat which ended up indoors due to weather. We already had a costume so we decided to give it a try. Kevin got to pass out candy to the kids and see their costumes. He even said HAPPY HALLOWEEN to the treaters on his Talker. 

Pumpkin Carving with Regina...another new experience. He never would have stayed put for it if I had attempted this with him. Love these expressive pictures that I captured. 

We all carved pumpkins this year! We had lots of pumpkin seeds to roast...yum!

Karen - Jon - Kristen - Kevin

 It was a chilly night outside on the porch waiting for the trick or treaters. We stayed warm with friends and hot chili, later a car ride around the neighborhood to see decorations, and ended with Christmas carols on the piano.

Norah Jones
Jingle Bells