Update 121 from Lin and Rob

Hello to you all, hope life is good for you. Here we go again with a monthly post that has turned into 9 weeks!


Steve has been off Lamictal now since July 24th. He firmly believe his past seizures were medication related and it seems we were correct. We will still keep our thoughts and prayers oriented along that idea and ask that you do the same. Steve is only on vitamins and an anti-acid med that we will discontiue in a few days. We are considering a small dose of a stimulant, but are trying to get him more sleep or possibly just more caffeine before adding any meds.

The YMCA has turned out to be a good theraputic reasource. Having Steve walk and do exercises in the water allows him to stretch muscles to positions he cannot do "on land" so to speak. The fact that Steve can swim now between sessions with the Willowbrook staff at the high school can only help.


We seem to have stopped the weight gain. Now to try and reduce it some. That is a good idea for our whole family, even the dog! At present we are trying to arrange our home into therapeutic areas for Steve's use. We are trying to decide the best place to put our eliptical so Steve can get on (but especially off) safely.


Steve is making most of his gains in the Speech area and believe us it is VERY nice to see/hear! One thing we've been doing with him is playing a game called "Taboo" and getting lots of laughs as we do. The idea is to describe a given word without using any words on a list, and you have to be creative to make that happen. One of our recent favorites was when Steve described a belly button as "an abdominal crater!" Sometimes when you are so centered on what is going on, you miss improvements in other areas though. This is evidenced by some nice happenings regarding Steve's left arm and hand. As when his legs "came back" he is starting to feel cramps and "charly horse" muscle issues. Stretching works these out and when pain free, Steve can actually reach his left arm up to shoulder level. We have him trying to throw a tennis ball with his left hand and he can get the motion but the strength is not there yet. It's also hard for him to open his fingers to release the ball.

Vision issues continue to frustrate him and us, so we saw a highly recommended specialist last week. He confirmed what we have been told regarding left side neglect, but was impressed with the progress Steve has made considering the severity of his injury. He offered lots of information and encouragement, and seemed convinced that Steve will continue to make progress and learn to compensate as time goes on. A very good visit. We'll see him in six months for an updated field of vision study.

Last week we had a meeting with his therapists at Willowbrook (he goes there two afternoons each week) and we're always a little on edge when we attend such things. In the past, at different facilities, they'd blindside us with discouraging comments. That has not happened here. In fact, at this meeting the statement was made that the past two months have been his best since he started there a year ago. That was so good to hear. We see the progress, however small, but it's great to have others be excited about it, too.

Thank you so much to those of you who text Steve. He checks his phone all the time and is so glad to keep in touch with friends. People say that when you read the text messages he sends, you would never know he's been injured. It's the best way for him to stay in touch and great mental therapy for him! Please feel free to text him even if you never have, or even if you think he wouldn't know who you are! He would love it. His number is 248-770-6092.

He also loves visitors, and we hope you know that you are always MORE than welcome to stop by. It's good idea to call us first just to make sure we're here (Rob - 568-6092 or Linda - 568-6091). FYI - when you visit it's easiest for Steve if at least one person sits on his right side. Also, we talk about his improved speech, but you may not witness that. Don't take it personally. He usually does best one-on-one and when it's pretty quiet. We have his Dynavox (talking machine) handy if a number of people are here to help him out if he wants it. He can always also communicate by writing. It's so nice for him to have someone besides us to visit with or eat cookies with or just to watch TV with! If you've never visited him or aren't sure what to expect, please don't let that stop you. We're always here to make sure everything is comfortable.

Thank you for reading this and for continuing to keep Steve in your thoughts. It means so much!

Love,

Rob and Linda