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Thursday Update: 06/06/2006

Well we had a good Fourth of July. I took Monday off work and stayed out in Omaha for a four day weekend. It was so good to have extra time with Matt!! He was in good spirits and it lifted mine so much to be with him.

We had a visit with his parents and grandparents on Saturday…took them on a tour and out to lunch. We spent most of the rest of the weekend relaxing, talking, and hanging out…it was just what we both needed. We got a few recommendations for the ‘best’ pizza places around town, and tried a few out. We went out and saw fireworks together, played a few games of Uno, and saw a movie.
On Monday I followed him to his classes and therapies…it was good to see what a typical day is like for him and to catch up with his therapists. They all agree that Matt is doing great with everything. He walked around 250 feet yesterday with the walker and did great! No resting or troubles, and very little help from the therapist! After that he did some squats and other mat work. His PT is working on strengthening his hips, back, and legs to help him be more stable when he goes to stand up. So, they work a lot on stand to sitting. He’s getting pretty good at it! On Friday his PT gave him the ok to do self transfers in his room! What this means is that they feel Matt is capable of getting from the chair to the bed, the chair to the toilet, bed to chair etc…without having to have someone standing by! He was SO excited! He’s been doing great with the transfer pole ever since he got there, so of course he was annoyed that someone needed to be in the room with him…but he’s happy that now everyone agrees with him and he’s proven his abilities! It is a great feeling for him to be able to just get up when he wants and do his own thing. The other morning when I got there he was completely ready…up, shaved, teeth brushed, dressed etc COMPLETELY by himself! I just helped him tie his shoes and we were off. He loves feeling that much more in charge of himself…it’s a great feeling indeed.

This week he is supposed to have a cooking evaluation with his OT to see what kinds of simple things he can prepare himself in the kitchen. He is going to go to the store again and buy stuff to make sandwiches. We sat down with his Life Skills person and went through this week’s menu, picking out a few that didn’t sound too great to Matt. On those days he will be responsible for making himself a meal…either a sandwich and chips, or a frozen microwavable pizza. He made a grocery list and is supposed to go buy the supplies today or tomorrow.

I’ve also discovered that some of the ‘classes’ are really just different forms of therapies with special names. I couldn’t figure out what ‘Yes You Can’ was all about…well, it’s basically OT time spent on fine motor skills. They’ve outlined 4-5 activities that are things that would be good for Matt to work on. He sits down with a staff member and works on them for 30 mins, several times per week. On Monday, he worked on stringing wooden beads and screwing/unscrewing nuts and bolts on a board. (They have a tree with close pins, but all you OTs who have worked with Matt KNOW how much he LOVES that task!!! He vetoed that one right away!) He worked through the tremors and did pretty darn well. He’s really trying hard to overcome that tremor and control it the best he can. The medication we are trying now does give him more times throughout the day where it is calm, but it is still active most of the time. We are hoping that as time goes by and we increase the medication, that the periods of calmness will also increase!

Matt found out they are having a car show on the QLI campus in a few weeks, and asked our friend Jay if he could help get the Trans Am ready and bring it out for the show! Matt was thinking it would be kind of cool to have his car there to show off, as well as spend some time with his friends. I am working on trying to get some guys together to go out with Jay and the car to hang out with Matt. The fact that Matt WANTED his car there meant a lot to me. I want to make it happen for him!!

Matt has been revealing himself more and more these days to the staff there…and I am so happy to see that! He doesn’t realize how awesome he is…how funny, smart, and intelligent he is. People are naturally drawn to him, as we’ve seen throughout this experience. We’ve often been amazed at the amount of people who have been affected by his struggles and have reached out to him. It is beautiful. I tell him what’s not to love about him and he smiles that knowing smile and agrees….’yep, I’m awesome’. I am so lucky to have him. I want him to know how truly worthy he is…worthy of the love and support people show him…worthy of a future filled with good things…worthy of this second chance at life.

Last night he went out with a group to see more fireworks. They took one of their small buses which hold several wheelchairs and have a few benches as well. When we went fishing before, we also took a bus like this. Matt rode in his wheelchair that first time, and he really hated it. We talked to the staff afterwards and said that was the downfall to the fishing group…riding in the bus in his wheelchair. All these months Matt has ridden in the car like normal, and that’s what he wants to do. Matt wants to be able to do as many things as he normally would…no special equipment, no adaptive pieces, etc. So, the next time they went out, they offered to have him transfer from his chair to a seat and ride that way. He was so appreciative of the fact that they were willing to do it his way! Now when they go out, they have him ride in a bench seat, not his chair…which helps so much. This is a small thing…but means so much to Matt. We are grateful that the staff there are listening to Matt’s desires and needs and are working hard to accommodate and work on things that are meaningful to him.

Everyday Matt is faced with innumerable challenges, both big and small…and each day he gets up and meets them head on and chin up. He is determined and he is willing to do the work. That’s not to say that he doesn’t get frustrated, down, and tired…he does. But he fights it. Each day, he fights it and he overcomes it.


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