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Tuesday Update: 03/14/06

Spring is just around the corner! Yahoo! This past weekend we had beautiful weather and I got out and cleaned my flower beds. Raking the leaves out revealed many bulbs beginning to make an appearance and I could feel myself shift into spring mode. In fact, I think the time of year has put an extra spring in both our steps recently.

If you had asked me a few weeks ago how Matt was doing, I would have said pretty well. He was hanging in there, working hard, and doing ok. Well, this past week…Matt has changed quite a bit. He has really turned over a new leaf and his attitude has made a major shift. One of the biggest changes has been with Matt’s speech and communication. Mostly, that he is making a much bigger effort TO talk and communicate with people. He has been so self-conscious of how he sounds that he hasn’t really talked much…even to me he didn’t talk that much. In the evening, we’d have more conversations, but during the day he pretty much said as little as possible. It was like pulling teeth to get him to provide more input. Well, that has all changed significantly. On our road trip to IA City last week, was when I noticed it most. He also took a lot of interest in what was happening at the appointment, filling the doctors in on what had happened and only turning to me for help filling in the gaps or when they couldn’t understand. This was a HUGE difference. At nearly all of Matt’s doctor appointments, he wants me to do the talking…but this time he was really involved and engaged. He said he felt more ‘aware of his surroundings’ and that he was just feeling more like himself. It was sooo good to see!!!! He made little comments here and there and responded when I made comments. It was such a good trip. He also did beautifully with transferring from the wheelchair to the doctor’s chair. We did all the transfers ourselves, with no gait belt! He has so much more control and stability now! Even he admitted that they went really well!

The next day, I told him how excited I was that he seemed more motivated and focused on his tasks…he told me it was like Shawshank Redemption…’Get busy living, or get busy dying’. Phew…how true is that!?! (Side note…if you have NOT seen that movie…you most certainly should.)

So, he has just been a new man. He has always worked hard. Everyone who has worked with him knows that. But now his attitude is so much better. He is never going to be EXCITED to do therapy…and never going to WANT to do it…but he is doing it with a smile on his face and a smart-aleck comment on his tongue…just what you would expect from Matt.

The visit with the therapists here at home went really well too. They gave us a list of things Matt can be doing here at home. Of course, I being the anal/excel-loving person that I am, came up with a very nice spreadsheet with his schedule of activities for each day. He is spending time on PT and OT activities in the mornings now. He can get on the floor and work out while I’m downstairs working, then he crawls over to the couch and gets up when he’s done. He’s been working on his writing and other fine motor skills at the table after breakfast as well. Two days a week, his dad is coming over to help him work out on the weight machine in our basement. He’s working on strengthening his muscles as well as working on his balance. Even though this is a lot of work, Matt is doing it all with his eye on the prize. He knows what he’s working for. Now, more than ever.

We are still checking into the options for inpatient therapy, and haven’t found out what insurance will pay for yet. I will keep everyone informed as that situation pans out. If we can’t make it work to send him someplace, then we’ve agreed to really just do more and more with his time here at home. And now, he is in a good place to do that. Just a few weeks/months ago he wasn’t ready physically to do so much independent work. But now, he is! YAHOO!

The eye appt went well also. The doctor rattled off the various things that are wrong with his eyes…but the gist of it is that the muscles which control his eyes are firing too much and in the wrong sequence. For example; when he tries to look up the muscles on the top and bottom of his eyes fire at the same time, making his whole eye ball go in. When he looks left his left eye goes down. When he looks right, his left eye goes in. They are all messed up. And, of course, he still has the double vision. Well, the doctor said that all these problems could resolve themselves over time as his brain heals. However, if they don’t…there are surgical procedures which can fix the problems! YAHOO!!! He said normally they don’t like to do anything until 6-12 months after the hemorrhage and since we are just barely at 6 months now, we have some healing time.

Also…there has been some news with the Cyberknife situation. Apparently, there is some debate between the neurosurgeons and radiologists about whether or not Matt does have an AVM! They have been reviewing all of his past tests, and with this latest CT Angiogram, they aren’t quite sure it’s there. So…they are probably going to retest him and go from there. Obviously we don’t want Matt to have to go through the Cyberknife treatment if it’s not necessary. Please pray…that the doctors will come to a consensus that we can feel good about. Wouldn’t it be FANTASTIC if there was no AVM!??! Then Matt could just focus 100% on rehab and not worry about it happening again or having to treat it. It would be a dream come true!!!!!!!!!!!!!!!!!! Either way, I will let you all know what is happening with that…when I know!

It seems like time is just flying by! I apologize for not keeping this updated as regularly as I used to. It is hard to find time with our schedule right now. I do hope you all know how much we love you all and how grateful we continue to be for your love and support.


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