February 19, 2018

The good news is that the young man continues to make progress. With the consent of his doctor, we started to reduce the amount of Keppra (antiseizure medice) Josh takes, and we've noticed that it makes a difference in his "alertness" and "connectedness." Shortly after the accident, Josh's doctors put him on mega doses of two antiseizure medication. Seizures are a significant concern for TBI victims and Josh had many during his first week (petit mal, not grand mal). The medications seem to have done the trick, but the new doctors we visited when we got back to Portland in October were quite surprised at the size of the doses he was taking every day. At Mary's suggestion, they agreed to slowly reduce the amount of Keppra he takes. We've been watching closely to see if there have been any negative consequences, i.e., seizures, but we haven't noticed anything at all and so the weaning process continues. With less of this medication, Josh seems more alert and able to interact. If all goes well, he should be completely off of Keppra within a few more weeks.

We let Josh walk our dog Remy from time to time now. This makes us a little nervous, but he seems to do just fine. The only problem is that he gets so cold! We sometimes have to run his fingers under warm water when he gets back. But he does fine, and Remy loves it.

Josh continues to do a lot of vision therapy to strengthen his right eye. Here he is working on something at home.

And here he is doing vision therapy at his therapist's office. The red and green glasses are designed to help him with color blindness, which he has in his right eye.

A caretaker provided by the state continues to come into our home for three hours every weekday afternoon and works with Josh on various therapies.  These caretakers are not professional therapists, so they are only able to do what we ask them to do. Mary has spent a lot of time identifying helpful therapeutic activities for these workers to do with Josh, including math, reading or writing activities from workbooks that we've purchased, educational games that Josh plays on his iPad, sitting and reading a book (he enjoys the Boxcar children books), or even playing some games on his Kinect/XBox. Even though these workers aren't professional therapists, we appreciate the work that they do and the time it gives us (especially Mary) to focus on something else for a few hours each day.

Josh still struggles mightily with initiation and aphasia. On the initiation side, Josh sometimes gets "stuck" doing basic tasks. He has made improvement over the weeks and months, but still his biggest challenge is the simple task of brushing his teeth, believe it or not. He stands at his bathroom sink with toothpaste on his toothbrush but just can't actually insert the toothbrush into his mouth. He tries and gets close, but then he pulls his hand away. This is obviously just a mental issue, as he has no problem putting food or even his finger in his mouth. Mary learned that he'll put the toothbrush in his mouth if one of us brushes our teeth at the same time and we do it together. We have been taking this approach for weeks. Now he has progressed to the point where he will start brushing if one of us just pretends to put our toothbrush in our mouth at the same time he's brushing. This makes Josh laugh, since we're obviously just pretending, but it does the trick. So now we often stand at the bottom of the stairs while he stands at the top, just outside his bathroom, and pretend to start brushing at the same time. Very interesting phenomenon.

The aphasia is a real beast. The poor guy has such a hard time coming up with words. Those of you who have spoken or texted with him will know well what this is. He understands just about everything we say to him but struggles to find a way to communicate back. This happens to all of us from time to time, especially as we get older, where we can't come up with the name of a person or movie or place, and can be very frustrating. Josh doesn't seem to get frustrated (by this or anything), but it seriously undermines our ability to understand what is going on in his head. This is both frustrating and heart-breaking for us. It is definitely one of the most difficult parts of this situation.

We continue to appreciate deeply the love and support we receive from so many. Thank you all very much.