Saturday, March 25, 2017

Community Theater Experience

We went to a community theater play to see Kevin's sitter/art teacher and her family perform in a version of Snow White. There was an actor that was sad and crying for her part in the play and this greatly upset Kevin. I had to move us to the back of the room to try and get him under control. Jon asked why I didn't just leave and bring him home - I waited until Regina came out on stage and Kevin was fine after he saw her. It seemed like a good opportunity since he knew a whole family of actors on stage to hopefully start to make the connection that during a play the actors are pretending and they are really okay and not hurt or upset. Kevin is very sensitive if he sees a live person upset (sad, scared, mad) he gets upset - on stage or in public when a baby cries or if his mama cries. He does not have the same reaction when watching someone upset on television or in a movie.

Love this family!

I didn't cut his nails that week

Talker Update and Verbal Sounds

I think I figured out why Kevin chose to have a green cast after his surgery. It had surprised me that  he chose the color green because he almost always picks the color blue on his Talker for anything and everything. But later, I realized that our friend that had surgery a couple months before him had a green cast. We had been showing Kevin pictures of her in her green cast as we were preparing Kevin for his surgery. I think our friend got a kick out of that when I told her.

Kevin still likes to pick the color BLUE on his Talker...and now he uses one of his verbal "b" sounds with it!!! I think this is very exciting that he is using the word on the Talker and his verbal sound together.

Another favorite Talker moment was when we were at physical therapy and getting ready to leave the therapy room. Kevin had used his Talker to say HELLO MY NAME IS KEVIN. I was surprised to see that he had said that because he hasn't used it without prompting...and I was also thinking that Kevin knows the therapist already knows his name. But then I realized there was a boy and his mom in the therapy room with us...and so I think Kevin had used his Talker sentence to introduce cool is that!!!? He's done this a couple more times when we are out in public. Happy proud mama moment!!!!

Kevin has been using a lot of verbal sounds again lately. He continues to use byeyay, unga, and a variation of b sounds, like bl - for blue. He also added a new sound that is difficult to's like a low guttural or growl sound...but he uses it as a happy sound. It makes me so happy to hear him use these verbal sounds as babble and for purpose! I hesitate to even say this but I will for the record and hope I don't jinx it...I haven't heard him doing any gulping. As far as the increase and maintaining the verbal sounds the only thing I can think of besides the use of the Talker is that he has consistently been using the Hyperbaric Chamber since his surgery in January.

2 months after foot surgery and new bracing

My last update on Kevin's foot was about a month ago after the green cast was removed and he was wearing the air cast. We've been going to physical therapy once a week for a month and each week he has been getting stronger. First standing for seconds and increasing over time. He was able to take steps with the air cast but needed to support himself with his hand. On March 9 he was fitted with the new AFO brace and he immediately began independently walking with no support. In fact, the next day we were visiting my parents and he immediately began going down and up the basement steps. He is now independently walking throughout the house and up and down the stairs easily with his AFO brace...which means he's up to all is old shenanigans in the house.

We had an appointment with the orthopedic doctor on March 17 (a week after receiving the AFO brace) and he said everything looked good with his foot...but he doesn't like the way Kevin's foot is positioned in the new AFO brace. 

I was confused when we received Kevin's new AFO brace because it still had a heel wedge. The AFO brace he wore before the foot surgery had a heel wedge but I thought it was because of the abnormality of his foot that he needed the foot wedge. The orthotist that makes the brace and our physical therapist explained:

"The current AFO is set in 0 degrees of dorsiflexion, or neutral ankle angle. This is in contrast to his previous AFO set in 15 degrees of plantarflexion, or -15 degrees of dorsiflexion. This change is secondary to no longer having a contracture in his ankle with his gastro/calf muscle. The angle of inclination has remained the same at 12 degrees (which is the reason for the heel wedge). This increases stability for standing and ambulation by placing the ankle in the proper position for activating muscles in the hip and stabilizes the ankle. The expected position of the ankle (angle of inclination) during midstance when walking is 12 degrees. In other words, the most stable moment during the gait cycle occurs when the angle of inclination reaches 12 degrees when standing on one leg during walking. This is the position we have put Kevin in to maintain his improved ROM and also increase his functional mobility and safety."

So this current brace with the wedge is why Kevin was able to walk independently immediately after getting fitted in it because it supports his balance and stability while protecting his foot and ankle. He cannot take steps without the brace on...yet. 

The orthopedic doctor spoke with our physical therapist and he is recommending a hinged AFO brace instead of the wedged AFO brace - to use the gained mobility in the ankle since the surgery and to maintain the increased range of motion from the heel lengthening.

It is my understanding, after talking to the orthopedic doctor and to some mom's at Kevin's dance class - that there is some risk of spasticity recurring in his foot if it is set in the wedged AFO brace position. It sounds like the hinged AFO brace will allow him more mobility to use the function he has gained through the surgery...which we of course want to maintain.

He can only walk with the wedged brace on at this time. It is my guess that once we receive the new hinged AFO brace - Kevin will not be able to walk as independently as he currently is with the wedged AFO brace. I am assuming that eventually he will gain this ability and trust that this will ultimately be better for Kevin's foot in the long run - to maintain the flexibly and mobility Kevin was given from the surgery. It sounds like we will end up having both braces and will alternate the wedged and hinged brace during the day until Kevin is able to walk independently with the hinged AFO brace. 

We scheduled Kevin's next surgery on his left hip for June 22. 

Thursday, March 23, 2017

Back to the Basement

Once the green cast came off and Kevin was in the air cast he began scooting around the house on his bum. There were a couple time when he indicated that he wanted to go down to the basement but he was unwilling to let us accompany him down there because that has always been something he does on his's his alone time/play time in the half the fun was going up and down the stairs. I didn't think it was a good idea to have him going up and down the stairs until he was walking.

On the first day of March, Kevin finally got to go to the basement. The tornado sirens went off very early in the morning, like 5am - so we got out of bed and went to the basement. Later that same day after Kevin got some free time he made a beeline for the basement...even though I tried blocking the door...but the first chance he got he snuck down there without me knowing to prove he could do it safely on his bum.

Up and down basement steps on my bum with air cast 

March 12, 2017 - My Niece's Confirmation Day

My niece's Confirmation day! Saint Peter in Chains Cathedral in Cincinnati with Bishop Binzer. Blessed to be her aunt and sponsor.

Earrings I received for my Confirmation. 

Dance Unlimited - Spring Session

Kevin has a dance helper! Abby is a junior in high school that we met through our awesome church family. I had a feeling that Kevin would likely participate better without me and with someone that would be familiar to him and help him have fun. This gives me the opportunity to get to know some of the other parents in the group. I've already been taking advantage of the parent support to gain more information as a special needs parent...especially in relation to Kevin's pre and post surgery.

Abby on the left. Kellie the dance instructor on the right. 

The spring dance season started off with a big Valentine's Day Party with all the dance classes.
Roses are Red, Violets are Blue
My name is Kevin. How do you do?

Kevin is participating in Dance Class A which meets every other week. We are also trying Dance Class B that meets on the off weeks. So he is now going to dance class once a week.

After the second week I used Kevin's Talker to tell him that he did a GOOD job at DANCE. Kevin responded on his Talker by saying LIKE! And he does seem to be enjoying the dance class a little more with his dance helper. This makes me very happy!

The first two weeks, Abby and I helped Kevin together which was easier since he was still non-weight bearing after his foot surgery. But now Abby is handling Kevin very well and she has really impressed me. I feel very blessed that she is helping us!

January/February/March Music Therapy

It's been a while since I've given a music therapy update.  Here are some of my favorite moments and progress I've noted in the last few months.

When the music therapist arrives she sings a Hello song. Kevin nearly always chooses the guitar for this song. Afterwards she asked if he wanted MORE guitar music. I thought he might say WANT or MORE...but instead he said HEAR GO on his Talker. I love it when Kevin answers with a word in a way I wasn't expecting.

Another time, Kevin said BLUE FISH on his Talker. The music therapist didn't miss a beat and immediately began singing..."Just keep swimming, just keep swimming"...get it? - Dory, the blue fish!

She has a choice board that enables Kevin to choose a Disney movie song. He finally chose of his favorites. She didn't have the recorded song to play for him so she sang it acapella and Kevin loved it and smiled at all the same times as if he was listening to the song in the movie..."I'll Make a Man Out of You"! I was really impressed that he still enjoyed it without the visual and sounds from the movie.

Kevin's learning to take turns on the piano and other instruments...using the Talker with STOP/GO. She brought visual signs to use for STOP/GO and Kevin easily used his Talker to say GO when he was in stop mode and wanted it to be his turn to play. Another day while playing the piano and using the STOP/GO words he said STOP and then NEW - I think he wanted a new song.

Kevin is using the ribbon sticks better in music therapy and dance class.

Another significant observation is that when Kevin is given two choices he is crossing over and choosing a choice on the left side.

And best of February Kevin started smiling more during his music therapy sessions - Yay! He's feeling comfortable with the music therapist and having some fun!

I almost forgot to mention that we received some financial help for Kevin's music therapy sessions. The community county developmental disability board is now offering funds through a family engagement program. It was a fairly easy process and will be helpful to continue this beneficial program for Kevin.

I've been trying to capture some photos of Kevin with the various instruments but it's not always easy because I don't want to distract him and sometimes I am helping...especially if we are using both hands with an instrument. She got some adapted mallets for him to use with the drums and xylophone so that he can grasp it easier with this left hand but he still needs a lot of help.

Push Bells

Ocean Drum and Thunder Stick

She brings it all...except the piano of course

March 1, 2017 - Marble Painting

This was my FAVORITE art session...and Kevin's too I think! I almost hesitated putting on Kevin's "paint shirt" because in the past he never got a drop of paint on it because he has had no interest in painting and definitely never wanted to get paint on one of his fingers. Now take a look at the plethora of photos below. I couldn't stop taking pictures. I love this girl! She is great with Kevin. He got paint on more than a finger...his whole hand!!! And his nose, ear, neck, elbow! And paint on his paint shirt!!! I just sit there with a goofy grin on my face the whole between taking a million photos.