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 appointment...now 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 head...it 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.
I don't comment often, but I still follow your blog. I would really enjoy emailing you in private. I have some questions. Our son is spastic on his left side. Can I give you my email address so that I can have some personal advice from you?
ReplyDeleteThank you.
I'd be happy to email with you. My email address is jkkhudak@gmail.com
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