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Monday Update: 10/30/06

I realize I haven’t been as good at keeping this blog updated recently. It seems there has been so much going on, and yet it’s not much worth reporting. We’ve had some changes to Matt’s therapy schedule and we’re still trying to work through how to deal with them. We are in the process of looking at our options for continued speech therapy. His therapist told us a few weeks ago that she believes she has reached the end of where she can take Matt in therapy right now. She didn’t really give us much time to really talk about what she was thinking and we sort of felt dumped. It has been a hard pill to swallow for us both. I have spoken to other therapists, and doctors, and we are going to have another therapist meet with us to evaluate Matt’s speech. We will see what she thinks about continuing structured therapy. I will keep everyone posted, as we learn what our next steps will be.

It has been a very stressful couple of weeks, trying to work out the details with my insurance and the doctor who oversees Matt’s care. It is very easy for people to point fingers and say ‘you should do this’ or ‘you should try that’…but no one really has a clue what it’s like to try and set all this stuff up…while trying to work fulltime, maintain a house with pets, and take care of everyone’s needs. It is very difficult, and very stressful. It’s not a burden that anyone can ease for me…but it is hard when often feel that everyone is judging us and our decisions and I feel I’m under constant scrutiny. I always have to have reasons and justifications for everything we do and I find myself on the defense. I’m not trying to make excuses…I’m just trying to do the right thing for us, the right things for Matt, and keep us afloat. All of Matt’s rehab would not be possible if it weren’t for my job…my benefits…my insurance…my flexible work schedule etc. If I didn’t work hard to maintain that job, where would we be? I have to juggle the priorities and make things fit where they can…I hate that work has to be so high up on my list, but it just has to be right now. Unfortunately it may seem like we’re not moving fast enough on things…or we’re waiting too long for others…or we’re not trying everything possible to help him right now…but we are doing the best we can. I wish everyone could see that and realize how hard Matt and I are both working right now. Whether or not you think we are doing things the way you think we should…we are doing the best that we can for us.

Next weekend I am leaving for a business trip for 4 days. I think this pending trip is also causing me to worry. It is a big leap into the unknown for us both. Matt’s dad will be coming to stay with him and help him out around the house. It will be the first time that Matt has been at home without me for an extended period of time, and we are both nervous about it. It is sensitive to have someone else come into your private life and help you out. Even if it’s your dad. I know that they will do just fine, and it will be good for us both…but I know we both have insecurities about it. I ask you to keep us both in your thoughts next week.

On the flip side…Matt is doing well. I have been going with him to his PT sessions the past few weeks, and it has been so rewarding to see. He is working hard with his therapist there and doing well. Thursday he worked on throwing a ball into a small, angled trampoline…if you throw it just right the ball comes back to you. He was throwing and catching the ball while standing with his therapist. He did pretty well! The times he didn’t catch the ball, he had to bend down and pick it up. He looked good, and fairly balanced, most of the time. It was good to see. He is still working on walking and more strengthening and stabilizing activities. His therapist videotaped him walking last week, to compare the walk she taped back in June. He walked with a four pronged cane and also a single point cane…and didn’t do too bad! At home we are still using the walker, which probably gives him more stability that he really needs, but it’s safer for now. I’m sure we’ll be working up to that four pronged cane at home soon. Matt told me the other day that he’s really been putting in extra effort. That when he first came home from Omaha, he felt a little bit like his progress has stalled out. However, he didn’t let the negativity keep him down for long…he said ‘screw it…I want to walk again!’…and has been working even harder since. You should never doubt how hard he works. Even when he goes through down spells…he never lets it keep him down. He always busts his butt…always.

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