UPDATE #120 from Rob

Hello everyone and sincere apologies for the delay!

The June/July period was good for Steve. We noted that in June we logged 18 "good" days and only 2 "bad". The Golf outing was a great success and Steve still seems to be progressing in a positive direction. Voice is getting better and Steve seems to keep his head up more. One little but positive thing we have noticed is more awareness of/control over his feet. He notices when they're not in the proper position (when climbing stairs, walking, getting up from a chair, etc.) and makes those corrections without anyone telling him how to do that. A similar thing happens when he's using the walker and his feet get out from under him; he usually fixes that problem, too. In the recent past he would rely on us to coach him or move his feet for him. We think this is an example of his brain being "re-trained" to command his body, possibly using different connections.

We wanted to make sure that Steve wasn't having to fight off any other issue as well as recover, so we scheduled some tests. We are happy to say that the chest x-rays and bloodwork we had performed in June proved all negative. The only issue now is Steve's continual Vitamin D deficiency and weight gain. As we have been told, Vitamin D plays a big part in how your body processes sugar and if it is used or stored as fat. This may play a part as to why Steve is consistently gaining weight, as well as lack of exercise. Our eliptical arrived this week, so we're hoping that will help, too.

The golf outing was wonderful. Thanks so much to Uncle Dave and all his helpers! On that day we saw old and new friends. We saw people who we see often and people who we haven’t seen in 30 years. We saw friends of Steve’s, friends of our family, friends of our relatives, and friends of friends. We saw people who had traveled long distances to be there. We saw people who took a day out of their very busy lives to be there. We saw names on lists and on signs to remind us that people who were not there were thinking about us. We saw people who have been working tirelessly for months to put this event together. We saw people shaking Steve’s hand and encouraging him. We saw Steve driving a golf cart again, and making his first attempt at public speaking. These are all huge things in our lives, and they strengthen us. Thank you all for that!

Steve has the privilege of working with great therapists throughout his recovery and one that he met at Willowbrook has also continued to communicate with Steve after she left there. Linda and I have often wondered what it takes to be a therapist, and we can now say that among all the attributes, COURAGE is definitely one. This was demonstrated to us at the Golf Outing when Amy actually rode on the back of a golf cart (where the golf bags go), while Steve and Linda sat in the seats and Steve drove !!


July seems to be a better month for Steve as we have already noted 16 good days and zero bad so far. We also have gone one year without any seizures. This has prompted us to ask Steve's neurologist if the anti-seizure med is still needed. An EEG also showed no activity that would indicate seizures. To that end, we have jointly decided to go off of the Lamictal. This will now allow an honest assessment of Steve's condition while not being influenced by any medications. As of this post, the only med Steve is on is a low dose of a prescription anti-acid. We hope that any sedative effect will now be eliminated and that Steve will still progress positively. Your positive thoughts and prayers have made the difference so far; please take a moment and think of Steve during this period.

A few weeks ago we joined the YMCA so that we can use their therapeutic pool. We've been trying to go at least twice each week and have seen some good things happening there. He does lots of exercises while in the water that we have learned from therapists, and many that we make up as we go along! Our favorite is to have him face one of us and run (high-stepping) across the pool while we run backwards in about four feet of water. It's not pretty, but we were surprised at his ability to do this!

Thank you for checking in. We hope you're enjoying the summer and that all is well with you!

Rob and Lin