Tuesday, May 24, 2016

Grandma's House is so much fun!

On Sunday, May 15 it was 35 degrees and a rainy/snowy day 
so we made the most of it by going to Grandma's house for the day.

Monday, May 23, 2016

Handicap Accessible

We recently began aquatic therapy through our children's hospital at a local gym/swim facility that has a therapy pool. Upon arriving for our first session I was surprised to find the facility not very handicap accessible, especially for a parent with an opposite sex child. The entrance/exit doors to the facility do not have handicap door openers and neither do any other doors I need to use in the facility. As a Mom going to aquatic therapy with my 11 year old son - we require a family changing room because I can't bring an opposite sex child into the locker room with me. A family changing room is provided in the swimming pool area but it is merely a room with a bench - no toilet, no shower. I can't leave my son in the pool area by himself when I need to use the restroom or shower. After our first therapy session I found out there is another family changing room that is located near the outdoor pool - which is not close to the indoor pool especially with wet suits. This family changing room is not private but a locker room with a few shower stalls. The shower stalls did not provide a chair. And once the outdoor pool is open for the season, the family chaining room will be in use with other families. I am unable to discreetly change him on the one bench provided out in the open. I found it very surprising that we were the first family that needed these accommodations at aquatic therapy. It is worth the hassle for the benefits of the therapy. But I find myself asking is it too much to expect to be able to offer my son a shower after swimming? I have made my concerns known to our therapist, the facility, and the hospital's therapy department and have received some response.

A couple weeks later we had a therapy appointment at children's hospital and I needed to use the restroom. I was surprised again to realize that the hospital did not offer a family restroom. So when I needed to use the restroom, I had to bring Kevin inside the women's restroom which did not have handicap door openers for two of the restrooms I visited. I was surprised that here at the hospital where disabled people often need to visit they do not offer a family restroom or an option to conveniently and privately change my son.

I began noticing posts in my Facebook newsfeed raising awareness for "Changing Places Toilets" to assist disabled people and caregivers. These restrooms would be similar to the private family restrooms that we can find in some public places but would also include adult size changing table and other conveniences for those with disabilities.

I share this post to help raise awareness. It's something to think about and be aware as you come across people in public with disabilities. I never realized how much we alter our life around this, it was a reality check for me.

Solisten Session 4

I've mentioned seeing another set back with Kevin's verbal sounds, occasionally we hear some sounds but nothing like we were hearing six months ago. I am still hopeful though because the last time was the longest stretch of verbal sounds he has ever had, I would guess at least 9 months.

We decided to have another session with the Solisten Headphones, also known as the Tomatis Method. Our last session was in June of 2014. This is a listening training device. He listens to a program for 2 hours a day for 13 consecutive days, we did a combination of emotional and language. It transmits the sound by a vibrator (on top of the headphone) that connects with the skull. The sound goes directly to the inner ear. This may help improve emotion, language, memory, and attention.

To stimulate the brain while listening to the headphones he does his smells and some vestibular stimulation (spinning in a chair) every 15 minutes during the 2 hours. As you can see from the photos below, I got some help with the spinning and smells.

When talking with FHC and deciding on which program to do during this session, he was asking me about various aspects of Kevin's communication and understanding. I had just had an experience with Kevin that gave a good example of some challenges that we were encountering.
We were visiting my parents and leaving that day so I put our plethora of travel bags by the door to take out to the car. Kevin was sitting on the couch and could see the bags. He started letting me know that he was upset, he was very insistent but I couldn't figure out what he was trying to communicate to me. I eventually gave him a choice board with the options: Stay at Grandee & Pap's; Go home; Something else; I don't know - he pointed to Stay at Grandee & Pap's. So we decided to take a walk outside with Grandee and eat lunch and then we would go home. Later, when we walked in the door from our walk outside, the plethora of bags were still sitting there, one of those bags was his DVD movie player - which Kevin indicated that he wanted as he walked in the door. OH!, that's what you wanted!!!! Why didn't you point to it or go over and get it!? Kevin is very capable of communicating in some form that he wanted that DVD player to watch a movie.

We've completed the Solisten session and we have noticed a small increase in his verbal sounds. On day 2 he began "talking" while listening. One other interesting improvement that I want to remember.
On day 14, it was a mollie suit day. Kevin is usually not happy about getting in the suit. Once he is in it, he is fine, but it is often a struggle to get the suit on. I put a dish with 3 of his snack balls in it in sight but out of reach while I put the suit on him that morning. I told him if he didn't hurt me that he could have the snack balls. He started kicking while I was putting on the pants and I told him he lost a snack ball, and I decided to eat it in front of him so he would understand. Oh gosh, I was worried this was going to escalate things to a new level. Then I proceeded to finish getting the pants on him without any further struggle. But once I started the jacket there was more struggle so I had to eat another snack ball...only one more left. Oh boy, I hope this works! And it did! I could see him processing it and he let me finish getting the suit on him and then he made a beeline for that last snack ball. The following suit days he has earned all 3 snack balls.

We even travel for the day up to Grandma's with our spinning chair


Your turn to smell it Grandma


On suit days we make a smoothie for a quick breakfast before we start our exercises and walking.

1 frozen ripe banana 
1-2 Tbsp - ground flaxseed
1-2 Tbsp - chia seeds
2 Tbsp - coconut oil
2 Tbsp - sunbutter
1/2 cup - coconut/hemp milk
handful of spinach or kale

Sunday, May 1, 2016

March & April 2016 Pictures

It may not be the official "Hello, Goodbye window"
but Kevin likes Grandee & Pap's new kitchen window

Kevin's new buddy 

First Communion
Looking at Aunt Marcia's photo albums
Silly Uncle Steve

Spring Zoo Days

We renewed our zoo pass this year. 
I am so happy that Kevin can get out of the stroller and walk around. 
He doesn't complain at all about it or want to get back in the stroller until he needs a break. 

We love meeting some of our favorite people at the zoo.

Cousin Ethan calls it the "Little Zoo"

Lunch after the zoo

I need some practice with my selfies - sorry Kevin
After spending the day at the zoo with Cousin Ethan
Kevin found his Kevin & Ethan Zoo photo book
and was intently looking at it and giggling
Remembering good times with his silly cousin!

A couple cute penguins!

Yay the Bears are playing instead of sleeping!
Tom Turkey strutting his stuff!

Two steps forward - One Step Back

On Monday, April 18 - Kevin had an excellent walking day. I took a video of him walking around the block. It was the longest and fastest I had seen him walk. He had a great stride. I was feeling so hopeful!

On Thursday, April 21 - Kevin walked into his physical therapy appointment and could barely walk out at the end of the session. I think the therapist may have stretched his foot a little too much. So we've had a set back. For 3 days Kevin couldn't walk and couldn't tolerate wearing the brace. I could attempt to put on the brace but as soon as I attached the straps around his foot - he wanted the brace off. By Sunday, he was able to tolerate wearing the brace for short periods of time but still wasn't really walking on it. On Monday, he was still limping while walking with the brace. Such a disappointment!

On Tuesday, April 26 - Kevin had an appointment with Dr. Nemeh. I was so thankful that this was scheduled and was hoping that the treatment would help Kevin's foot heal and get him back to walking. After I told Dr. Nemeh the set back we were having with his foot, he made the comment that he could see a change in his left foot. I wasn't sure if he meant a good or bad change and when I asked, he said "Good" - I wouldn't tell you if it was worse." He said the left foot looked straighter and less curved. Hopefully a combination of Dr. Nemeh's treatments and walking with the AFO brace. During treatment, we noticed some new blood vessels showing in a few different areas of his left foot that we had never seen before during treatment. This means that the blood was flowing and providing oxygen and circulation to his foot - a good thing! Unfortunately, he also found the repeated injury to Kevin's back like in our other visits.

Dr. Nemeh was pretty talkative during our session. He talked a little bit about some projects he has been working on with NASA to develop better treatments. I've heard some of this on the podcasts that he does on Blind Faith Live. I talked about some of the confusion I experience with Kevin and healing. I pray that Kevin is healed one day but sometimes I get confused and I think well this is the way God made him so maybe I just need to accept the way it is. I'll try to remember as best I can what Dr. Nemeh said to me. He said, No, Jesus wants everyone to be healed, Jesus is perfect, His love is perfect, and He wants that for us. People without faith are healed to have faith. Those with faith need to keep growing in their faith. He told me to remember the story of Jesus healing the man born blind in John 9:3 Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him." All for the glory of God. - I'll keep praying!

Photo before Dr. Nemeh's treatment that may
be showing where Kevin's foot was injured. 
I didn't want to lose the progress we had made with Kevin cooperating with putting the Mollii suit on while his foot was still healing and unable to do his exercises or walk any real distance. So I had him stand and help me in the kitchen and walk a small amount around the house and bounce the big green ball. He's really good at bouncing that ball.

Walking in April

It's April and we have had all kinds of weather to walk in - cold, snowy, rainy, warm, and sunny.
Yes, we even walk outside during April showers - but I couldn't hold an umbrella and take a picture at the same time - so you'll just have to ask my neighbors about the crazy Mom and SuperKid out walking in the rain and puddles - our neighbors are used to our crazy antics. We came home one day from walking outside and I found mud on the bottom of Kevin's shoe...only it wasn't mud...it happens! I just have to be careful of wet and "muddy" shoes because it's his only pair.

I love that we have been able to get out of the house and walk around the neighborhood. Kevin has been making excellent progress walking in his AFO brace and he can easily walk around the entire block - often times twice a day. Our current routine is we walk around the block and when we get back to our driveway, I bring out the stroller and we cross the street, when Kevin gets tired of walking he gets to ride in the stroller. It really says a lot that I can have the stroller out and he doesn't automatically want to ride in it until he needs to because he's tired - this makes me so happy!

Now that Kevin is able to walk some distance, this is a great opportunity to wear the Mollii suit (3 days a week for an hour). Kevin was pretty mad when I wanted him to wear the Mollii suit - it's about impossible trying to get a skin tight suit on him if he doesn't want it on. But now we have a good routine putting it on first thing in the morning. He spends the first 30 minutes in the suit helping me in the kitchen - making and eating a smoothie and unloading the dishwasher. Then we do our standing exercises and stair exercises. The last 30 minutes in the Mollii suit we walk outside - again this progress makes me so happy!

The physical therapist says we want to see Kevin walking with a good stride, where he is able to get one foot ahead of the other foot while walking - instead of short shuffle steps - this is not only good form but also will help stretch his hip flexors. Some days are better than others. Sometimes he will have a good stride if motivated to see something and sometimes we'll have an off day if he's too distracted while walking. I've been able to capture a few photos of his good stride. I even noticed in the photos that his arms are down and it looks like his arms are swinging in a cross motion too.

A cold day

He looks so casual and relaxed in this photo
Walking at the park to the playground
Smiling on Mollii suit day!
Wow - look at that stride!