Update #125 from Linda and Rob

Good morning, friends. Happy Memorial Day!

Thank you for checking in on this blog, despite the fact that we're so bad about updating it!

Things continue to roll along here. People ask all the time if Steve is getting better and the answer is yes, but it just takes a VERY long time. Sometimes the progress is so slow and small that it catches you off guard when you realize it has happened. All of a sudden we'll notice something and wonder when THAT started. One example is the use of his left arm. It still has a very long way to go, but often he'll lift it or use it without even thinking about it, and that's quite amazing considering where he started!

We are back to horseback riding and the past two weeks have been the best ever. His posture, balance, and ability to hold on with his left hand have greatly improved. We love the horse he rides (Malabar) and make him a special "horse granola" every week. When the lesson is over and we bring the wheelchair in, you can just watch Malabar's eyes as he realizes who Steve is and what treat awaits him! It's hard to describe how wonderful the people there are, too. Many of them are "kids" and show such a level of maturity and support that it's mind boggling. He has so many cheerleaders and friends there...it's a long drive, but we look forward to going every week.

One swimming activity has ended for the summer, so we now take Steve to the YMCA twice each week. Gail and Grams often come with us. We terrify people as we walk him into the pool by going down a ramp...I'm sure they're sure we are going to fall! We make up exercises to do in the pool - nothing you'd find in a therapy book, but they work for us!

The Nu-Step is proving to be a wonderful thing. He often pedals very slowly or just sits for awhile, so it's a time-consuming but valuable activity. We have given him "ownership" of this and rely on him to say when he's ready to stop, take a break, etc. The machine counts the length of time you are actually working out, and he's now up to over 40 minutes. That means he's probably been on the machine for about twice that long. Six months ago his doctor said she didn't know if he'd be able to use that machine, so we're more than a little happy with how things are going!

We've been spending lots of time with a low vision specialist trying to figure out if Steve's eyes are working together. Just when she thinks she's on to something, something changes and we're back to square one! The last visit we just pretty much gave up on the idea of prisms and talked about ways to strengthen his eyes and encourage more scanning without turning his head. Many of these things are simple and we do them already. We also have a computer program to use and are going to try some things with Beth's Kindle and possibly get something like an I-Pad.

We continue on with therapy at Willowbrook two afternoons each week, despite issues with our insurance. Those people are blessings in our lives! Therapy with Steve is hard work, and everyone is exhausted by the end of the day. You can imagine walking the halls with Steve in a walker, someone nudging his feet along, someone keeping his shoulders straight and his hip in, etc., and everyone else cheering him on. Quite a sight! He had an MRI on his shoulder and it showed no injury (probably just a "frozen shoulder" from lack of use), so now they're beating him up in therapy even more than ever!

The wonderful Uncle Dave and his wonderful helpers are busy planning the golf outing. We really can't express to them or to those of you who participate how grateful we are for your support. Without it so many of the things we do for and with Steve would not be possible. Thank you all.

Also...Steve always loves hearing from people, whether by text message or through the mail. Email is a little trickier, but we're working on that. His phone number is 248-770-6092 and our address is 1629 Commerce Pines Dr., Walled Lake, MI 48390. He (and we) would be thankful for any communicating you do with him!

Take care of yourselves and each other. Thanks so much for reading this! Have a wonderful Monday.

Love,

Linda and Rob