Summer Fun with Carrie & Daniel

 

Touch A Truck & Touch A Dog

I have really been loving our daily program. We haven’t had to do any crawling or creeping laps yet and it gives us a lot more freedom in our day.  We don’t have to be so scheduled to complete all our laps around the house. We can actually mix our day up a bit and even be a little spontaneous. This is part of what we want to accomplish with Kevin so he can make choices about his day. 

A recent Friday, was one of these exceptionally fun spontaneous days that turned out to be full of surprises and made me feel so proud of Kevin. 

We got a jump start on our program that morning, checking things off the list, and had most of the program completed by 11:00 am. Our city parks and recreation was hosting the annual Touch A Truck event that I wanted to try with Kevin again. We had attempted this a couple times in the past and never got very far with it. In the past, we basically parked, walked in, and almost immediately turned around and walked out. It is a lot of stimulation, lots of people, and lots of honking horns from the trucks. So I thought, if we had a good morning we would try it again this year. So we parked, walked in, walked around to see what was going on, and he didn’t seem overstimulated or indicating that he wanted to leave. I was really hoping they would have a garbage truck there but I guess they were busy that day. But they had some similar trucks that we looked at and watched some of the kids climb up in. Then I saw there was a short and fast moving line for the school bus, so I thought we could give that a try. Kevin patiently waited in line and patiently waited while walking through the school bus. That went well, so I thought I would get brave and try a little longer line for the ambulance truck, and he did it again. Kevin patiently waited in line and sat in the driver seat of the ambulance and even let me take pictures. So the next line was a long very slow moving line for the fire truck. So we tried that one too and it worked again! Kevin waited in that slow line and I was able to get him up in the high fire truck seat and take pictures. And of course he shook the firefighters hand before we left. It was so nice to participate in this event and see that he was aware and understood that these are the trucks that he loves to see go down the street. 

So after the truck adventure we came home and had lunch. Typically, we go in the hyperbaric chamber after lunch. But like I said, we’ve been trying to mix it up a little so after lunch I asked Kevin if he wanted to go in the chamber or go outside in his little pool. And of course he chose the pool. I thought it was supposed to be warmer but he didn’t seem to mind and was making all kinds of happy sounds while he was in the pool. 

When it began to rain and he began to shiver we moved to the front porch. Our neighbor and her dog came over for a visit. Kima is a rescue dog and has needed some extra love and attention. Kima came right up on our porch and Kevin and her hit it off real well. Kevin was touching her and giving her treats and Kima seemed to enjoy the attention. So this is another big deal, not only for Kima, but also for Kevin who used to have a real fear of dogs and animals.

The city was also having a farmers market this same day that I wanted to go to. So we went even though it was raining and Kevin adjusted to this situation too, when in times past this would never have worked with him. 

When we got home, Dad was home from work, and we had one more Gravity Free session to do and I was easily able to put Kevin’s harness on him and accomplish the last task of our day. Which in times past, once we started the “fun” part of our day, there was no going back to program.

Lots of proud moments for this Mama!

Kevin sitting in the Fire Truck

I like how Kevin is actually "touching" the fire truck at Touch A Truck

Kevin giving Kima a treat

Gravity Free

Gravity Free is a program for the lower brain, it helps with balance and proprioception.

Kevin wears a secure harness which is hooked up to surgical tubing, rings, and clips in the garage ceiling, so that he does not touch the floor. We accelerate Kevin in different directions and speeds, with no pattern of movement, it must be varied, so that Kevin's brain is always challenged to orient itself.

We do this 3 times a day and of course it must be timed before or well after meals. It requires 2 people: one to lift Kevin and one to hook up his harness to the clips from the ceiling. We do a session with Jon before and after work and then we find a friendly neighbor willing to help us out for a session before lunch. It's a good thing our neighbors know us well because Kevin did not like the Gravity Free at first and there was lots of noise coming from the garage, but he is beginning to enjoy it now.

3 Positions:

Forward & Backward Rolls for 5 minutes

Vertical Up for 5 minutes

Cartwheels for 5 minutes

Those of you that have been with us for a while may remember Kevin having this program back in 2007 when he was about 3 years old. At that time we were able to do it in the basement. But he is a bit longer and heavier now so we needed a bigger space.

He absolutely loved this program back in 2007

Solisten Session 3

Kevin is getting his third session with the Solisten Headphones, also known as the Tomatis Method. Our last session was about a year ago. It is a listening training device to educate the human ear with regard to the listening function. This is a program that he listens to for 2 hours a day for 13 consecutive days. 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 without passing through the tympanum. This may help improve emotion, language, memory, and attention.

Kevin is making all kinds of wonderful sounds during this session with the Solisten Headphones. One of his favorites is blowing his lips (blowing raspberries) and then turning it into a "b" sound. So I try to think of all kinds of "b" words to say. One of my favorites is while we are Blowing Bubbles.

It can be additionally helpful for him to swing or rock while listening to the headphones, so we often go to the park for some swinging.

Week 6 after Hyprocure Surgery & Mollii Suit

Kevin wears the Mollii Suit every other day for one hour.

We have Kevin stand as much as possible while he is wearing the Mollii Suit. At this time he is usually standing about 1-2 minutes and takes an 8 minute break in between stands for the hour that he wears the suit. I also encourage him to use his left hand while he is sitting during his break from standing.

I mentioned in the previous post that Kevin is ready and willing to walk on his right foot but the left foot is a little slower to progress. This is normal for Kevin because the left side of his body was affected by the in utero stroke. The left foot is slowly progressing because he is now taking steps occasionally.

Jon's birthday was on May 29, which was about 6 1/2 weeks after Kevin's Hyprocure Surgery and Kevin took his first steps that day. He stood up at the dining room table and walked into the kitchen while holding on to furniture, counters and walls. The left foot is still a bit unstable so I don't push him to walk too much at this time.

I didn't get a picture while he was taking his first steps but this is a cute picture I took that same day.

Week 5 after Hyprocure Surgery

NO more big, heavy, clunky, hot boots to wear. Kevin has NEW SHOES and is STANDING, on average 10 seconds 20X day. He is standing much better on his right foot and will favor his left foot. And Oh My Goodness, is he getting TALL, the first time I stood next to him while he was standing took me by surprise.

Kevin is sleeping in his OWN room and bed. This means I get to sleep with the ceiling fan on again and I can wake up early to walk and do some yoga. And while we are talking about me, I am finally strong enough (after my surgery) to carry Kevin up the steps. But I will admit that I kind of miss my snuggler, but we snuggle before bed now. 

Thanks to a good friend, 
Kevin likes his new Thomas the Train bed comforter.

Kevin is also Gravity Free in the garage…will share pictures or video very soon.

AND THE SUPER SUIT ARRIVED…will share pictures or video very soon.