Update #110 from Linda

Hello! Thanks for reading this despite the fact that it takes us ages to update! So many things are going on...

The day before Steve's golf outing we attended a golf event and met a young man (who has a TBI from a car accident) and his family. They are a little further along in this process, and have been a good source of information and support to us, for which we are thankful. One thing they mentioned was therapeutic horseback riding, so we checked that out and Steve starts riding next week. He'll have private lessons at first, then be part of a small group of riders as he progresses. We are really impressed with the facility he'll be riding at, as well as his instructor. Things like this are not covered by insurance, so we'll be using some of the funds from Steve's golf outing to finance it. Thank you!

The golf outing was beyond wonderful. We just cannot adequately express how much this support means to all of us. I hope you know how thankful we are.

One exciting thing that happened at the outing was that Steve drove a golf cart. He didn't think it was a big deal, but it sure was to us! A few days later I took him to a golf course he used to play and we rented a cart and drove around. I figured he drove at least two miles, and only scared me half to death a few times!

We have been discharged from the therapy he has attended since last fall. As it turned out, it happened quite quickly and we have little contact with his therapy team. That was a surprise to us, but we're moving on and looking for other options. One thing they recommended was getting a second opinion, and we were a little lost in regards to that. But we met a couple families who recommended a doctor. It turned out that he couldn't take Steve as a patient, but his partner could. We have had two appointments with her and walked out of her office feeling very encouraged. She is trying to work things out with our insurance company and a TBI facility she's connected with to obtain additional therapy for Steve, despite the fact that we are technically "out" of therapy days. Please cross your fingers...this would be huge. She's also checking with a group about having speech therapy at home, but nothing definite yet. We asked her about "neurofeedback" which is a type of non-traditional therapy, and she has seen good things happen with this. She's given us the name of a group involved in this, and we'll be calling them tomorrow. Apparently some of this is covered by insurance, but part is not. Thank you, once again, golf outing supporters! We also discussed swimming as therapy, and the challenges of doing that with a feeding tube. She has no problems with Steve swimming in a chlorinated pool, so we'll be checking into that, too.

A big thank you to our cousins Ken and Kathy who invited us to their "cottage" on Lake Michigan, and we took Steve there last month for a few days. There were about 25 steps to the beach, and he handled them with little problem. That was the first time he had his feet in Lake Michigan in a long time. Wonderful therapy! Then my mom (thanks, Grams!) rented a place in Muskegon, and we were able to take Steve there. That's his favorite place on earth, and he was so glad to be there. There were 75 steps to that beach, and we got down there twice. He did great on the steps, and on the long walk to the water, although Rob and I needed a nap afterwards! One of the last days there we put chairs in the water and got soaked to our shoulders. Such fun! He also drove go-carts at a place he's gone to for years. We didn't know if he could do it, and getting in and out of them was tricky, but once in them he did fine driving. Quite a sight! One day the wonderful Beth and Miranda took him to Grand Haven...I know he enjoyed some time with them and away from us! Another day we went to the beach at Grand Haven because they have chairs with big tires that you can push around on the sand. I got the bright idea of taking it into the water...thank goodness Gail and Beth were there to help get it out!

Steve has lots of issues, and we acknowledge that. But we see progress all the time, and know there's lots more to come. Yesterday he was on his computer and I could see how much his vision issues have improved just by watching him use it. He still eats very slowly, but has much less trouble with TMJ, which is a blessing. He's also able to drink more and thinner liquids with no problems. Tonight we met Beth for dinner, and the four of us sat in a restaurant. We handed Steve a menu, and he looked it over and decided what to order on his own. That has not happened in a long time (due to vision issues), and it felt great. We have been able to eliminate one med, and reduce another. We'll spend the next month reducing that further, then add a med that might help with response time (in speech). He did have a seizure (milder than the other two) several weeks ago during the time that his meds were being adjusted, and it was probably due to that. So we have to be very careful to make changes slowly.

As always, we send our thanks to you for reading this and sending energy and prayers Steve's way. Your friendship and support is so valued and appreciated by all of us.

We'll try to do a better job of keeping this up to date! Take care!

Love,
Linda