In August, Kevin had an appointment with Dr. Nemeh. As we were driving up I began to think how it had been several months since we had seen any noticeable changes in Kevin after his treatments. Dr. Nemeh and Cathy pulled in at the same time and while we were still in the parking lot, Dr. Nemeh began to tell me about a new machine that he got since our last session. So then I think to myself - well of course, I'm going to want to give this new machine a try for a few visits.
The new machine is a Pulsed Electromagnetic Field (PEMF) therapy. After Kevin's regular treatment session with Dr. Nemeh we went into a separate room to use the device because of its electromagnetic field. Dr. Nemeh began commenting on some of the effects it was having on Kevin and I wasn't seeing it and so he put the device on my back for me to experience it. Initially I didn't feel anything unusual but it didn't take long and I was feeling it and watching my right arm and hand quivering back and forth. Then he put it on my pelvis area and that was also a very powerful and strange feeling. I probably only experienced it for a minute on my back and a minute on my pelvis. I don't think I could have lasted much longer than that. He went back to treating Kevin and I understood why Kevin soon got up and walked away from it. His session ended and we went home. That night I had the best sleep I have had in a very long time. And when I got up in the morning I had no pain, discomfort, or stiffness. I got down on my mat to do my yoga stretches and breezed through them because I felt so good. This got me thinking how I don't really know how Kevin feels on a daily basis, he like me, could have some daily aches and pains that go unnoticed by others - so if these treatments with Dr. Nemeh give him relief in that way it would be worth it. I was pain free for a full week and it was still a lesser degree of discomfort I was feeling.
It wasn't long after this treatment session with Dr. Nemeh that we began hearing an increase in Kevin's vocal sounds. About a week later we were at church and I had tears of hope because I could hardly hear the priest over all the sounds Kevin was making. I said to the priest afterwards I know you understand that I couldn't shush Kevin. When a kid is learning to walk you don't push him down - right!?
Swimming
We continue to go swimming. I try to take him once a week on my own and we also signed up for private swim lessons. He took to his instructor very well and is very happy to be swimming.
Nursing Home Volunteer
In September, Kevin and I started volunteering at a nursing home. It is the nursing home I worked at over a decade ago before Kevin was born. I contacted my boss in the activity department and told her we were interested in volunteering. Our initial meeting with her did not go well at all. It was a totally new environment for Kevin and I think his best reference to it was a doctor/hospital setting and he just wasn't sure what was expected of him. It was bad. So I was happily surprised when we arrived for our first day that she had gotten us the "good" name tags with the magnetic back instead of pins - which gave me some encouragement. And I am happy to say that we have had our fourth visit and I am finally seeing more smiles from Kevin and more of his happy self come through. He is finally getting comfortable with the people we see on a weekly basis.
Dance Class
I also signed Kevin up for the Dance Unlimited. This is a dance class lead by a pediatric physical therapist at Children's hospital. The class is for kids of all abilities. They adapt the movements based on each kid's ability. Once again this is a new activity with new people and our first class did not go well. It started out ok but then he got overstimulated and was done and would only observe the rest of the class. The class only meets twice a month - so this might take longer for him to get comfortable with it.
Alternative Augmentative Communication (AAC)
In August, we found out that our insurance company would not cover any of the costs for a communication device for Kevin. He had an evaluation in May and we waited three months to find out they wouldn't even cover a trial. Fortunately, the company that makes the device also offers an app for the iPad. The device was $7,000 and the iPad app is $300 - adding up to be about $1,000 with all costs included (iPad and accessories). Kevin has had a couple AAC therapy sessions to become familiar with it and seems to be doing well. Jon and I will be attending an all day training with the app on October 3. I am so anxious to get started with Kevin and his Talker.
Spasticity Clinic
We had a second appointment with the physiatrist in August. Nothing new to report. Basically we are waiting for the Spasticity clinic to find out what the team will recommend for Kevin and what the plan will be. On October 4 we have an all day evaluation at the hospital. We will meet with physical and occupational therapy in the morning. Sneak in a communication therapy session with the iPad before lunch. Have lunch at the hospital. After lunch we meet with a psychologist. This is also the day of his dance class later in the afternoon. I'm not sure if we will be staying for that or not. On October 18, we meet with the whole spasticity team: physiatrist, orthopedic, physical therapist, occupational therapist, psychologist, etc to find out what they recommend.
In August, we found out that our insurance company would not cover any of the costs for a communication device for Kevin. He had an evaluation in May and we waited three months to find out they wouldn't even cover a trial. Fortunately, the company that makes the device also offers an app for the iPad. The device was $7,000 and the iPad app is $300 - adding up to be about $1,000 with all costs included (iPad and accessories). Kevin has had a couple AAC therapy sessions to become familiar with it and seems to be doing well. Jon and I will be attending an all day training with the app on October 3. I am so anxious to get started with Kevin and his Talker.
Spasticity Clinic
We had a second appointment with the physiatrist in August. Nothing new to report. Basically we are waiting for the Spasticity clinic to find out what the team will recommend for Kevin and what the plan will be. On October 4 we have an all day evaluation at the hospital. We will meet with physical and occupational therapy in the morning. Sneak in a communication therapy session with the iPad before lunch. Have lunch at the hospital. After lunch we meet with a psychologist. This is also the day of his dance class later in the afternoon. I'm not sure if we will be staying for that or not. On October 18, we meet with the whole spasticity team: physiatrist, orthopedic, physical therapist, occupational therapist, psychologist, etc to find out what they recommend.
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