First, I managed to bring a "bug" home, and Steve had a cold/sinus thing going on that wiped him out. Add to that the fact that his feeding tube site, which was supposed to heal in 1-2 days is still not healed after over three weeks. Part of that was because of just bad luck, and part was because he was sick (coughing, sneezing, etc.) and putting pressure on that part of his body. In any case, we found ourselves at the gastro doctors' office last Friday and they came up with a plan which seems to be working. We lost a lot of therapy days due to those issues, but have been getting back to our schedule since Wednesday, which is a great feeling!
Steve's talking is really coming along. We teased him when he was sick about the benefits of blowing his nose...coordinating his breaths and working the muscles in his head! He did not appreciate our humor, but I really think it did some good. The other day I was walking with him at home and we had a conversation during that walk about having dessert. He asked if he could have some, what his choices were, and told me what he decided to have...all while walking, which takes lots of concentration. I could understand everything he said, and that was an exciting event because he was "multi-tasking" which isn't always easy for him to do.
People have asked what types of therapy will be open to him now that his tube is out (once the site is healed). I'm sure we'll discover many new opportunities, but here are a few. He'll be able to lay on his stomach for the first time in two years, and do exercises in that position. It will be easier for him to get on his hands and knees, because someone supports his trunk to get him in that position, and always seemed to bump his tube when doing that. There are some machines that support part of your weight when you use them to make walking on them easier, and you're held up by a brace which always hurt his tube site, or risked knocking the tube out. Just FYI, the feeding tube he had wasn't just a little thing that went in his stomach. It was at least 18 inches long and Steve said, besides just the external pain where it entered his body, it hurt inside every time he twisted his body, stood up, etc.
We went to a low vision specialist to see what she could figure out with Steve's vision issues. Nothing is "solved" at this point, but she does know that his eyes don't work together. She gave him some clip-on prism lenses to try for a couple weeks, then re-tested him. He felt that he could see a little better with them. We are now waiting for new glasses to arrive that have prisms built into his lenses, and clip-ons that he will use when reading the newspaper or when on the computer. Those will magnify the print. This should help his eyes "zero in" on things better, and reduce eye strain. A funny story...there was a test the doctor did involving a white square. Steve could only see the white square, even when it should have looked red or striped or pink. She kept trying different things, but all he could see was that white square. Later we were in the waiting room and Rob asked once again if all he could see was the white square. He wrote "I saw one white square AND" (we sat on the edge of our seats waiting for some big revelation) "six or eight fuzzy green monkeys." We have not stopped laughing about that one! (And we have not asked again if he only saw one white square!)
Now it's Sunday the 28th and I'm going to finally finish this post! As of yesterday we are calling Steve's tube site "healed" which is such a blessing. With all the medical people involved in that battle, the person who ended up helping the most was a doctor's assistant. She remembered a similar case and contacted the doctor who had dealt with that situation and found out what treatment had been used. So THANK YOU, Terry!
We're (thankfully) back to our regular therapy schedule. Celia, his PT, has been increasing the weight he uses on the leg press. That will make his legs stronger and help with walking. Sounds like such a simple thing, but we had previously been advised not to do that because of the tone in his legs. So far so good! Rob has also put grab bars all over our house which Steve can use when walking in the hallways. We also hang onto them, since we walk backwards with him, and that can get a little scary near the stairs!
We just passed the second anniversary of Steve's injury. Amazing. To all of you who follow and support this journey, we can't thank you enough.
Take care of yourselves and each other!
Love,
Linda and Rob
P.S. The picture is of Steve riding "Rudy" a few weeks ago at Banbury Cross in Oxford. His assistants are Daniel, Amber, Colin, and Jessica (teacher). Great place and great people! The videos are taken at SportsClub of West Bloomfield where Steve plays tennis and does various drills with our friend Jennie. These show some of the movement he is regaining in his left arm and hand.
