Hello and Merry Christmas!
Remember on my last post I said something about this being a very different Christmas for us...
On Christmas Eve near midnight, while helping Steve stand up, I managed to pull his feeding tube OUT. He said something like, "Ow, that hurt a little" and I said something like, "Gosh, what did I do?" :)
We got on the phone hoping to find someplace close that could put a new one in, but only UofM used that type of tube, so off to the emergency room we went. Spent the night there while they tried to convince someone from radiology to do the procedure, but no luck. Rob and Beth headed for home early Christmas morning and Steve and I stayed while they tried to talk the morning crew into it, but weren't able to make it happen. So they admitted him, and we spent Christmas at UofM. That was the bad news. The good news was that the four of us were together, the procedure went without incident, Steve has another chapter for his book, and we met some outstanding medical people who tried everything to make things happen faster for us and gave us excellent care. We even ran into Laura, who was Steve's speech therapist (her husband was also having a procedure in radiology) so we got to visit with her. In any case, we're home now and all is well!
We hope all of you had a wonderful and peaceful Christmas! Take care of yourselves and each other.
Love,
Linda
Friday, December 26, 2008
Sunday, December 21, 2008
Update #101 from Linda
Hi! Hope all is well.
Rob is helping Steve get his day started, so I thought I'd write a little update.
Things are rolling along here. We have our Christmas tree up and our house is as decorated as it's going to get! Rob still thinks we'll get lights on our gigantic evergreen in the front yard, but it's just too cold out, never mind the fact that it takes hours to do it! We always cut a tree down, and Steve is famous for choosing one that won't fit in our house. :) This year we went to a place we've gone to before, but chose one they had already cut. He was fine with that, and we figured it was a nice solution. Beth was home yesterday and we decorated it. Beautiful.
Little things happen that remind us that progress is always being made. Yesterday Steve "scratched" some instant lottery tickets and removed all of the coating. In the past he'd make a few scratches and think it was done. I know that doesn't sound like much, but it's all good stuff. We also play Rummikub and Battleship often, and it's so obvious from playing them that his "left side neglect" issue is always improving. Every so often, Gail and Grams play Poker with Steve. He hasn't lost his touch for bluffing as they will attest!
I'm off work for two weeks now, and am so thankful to have this time at home, and the chance to go to therapy. On Monday Steve will see a different speech therapist and we're hoping for some good ideas from her. Prayers, please! During this time we're also hoping to take him to a gym (thanks, Jennie!) to try some of the equipment there. Rob has been talking to his PT about creating a table to have at home for stretching, so we're hoping to get started on that as well.
This will be a very different Christmas for us, but one that we are so thankful to be celebrating. As always we think of, and are so grateful for, all the people who have helped get Steve to this point. Blessings to all of you! Have a wonderful Christmas.
Love,
Linda
Rob is helping Steve get his day started, so I thought I'd write a little update.
Things are rolling along here. We have our Christmas tree up and our house is as decorated as it's going to get! Rob still thinks we'll get lights on our gigantic evergreen in the front yard, but it's just too cold out, never mind the fact that it takes hours to do it! We always cut a tree down, and Steve is famous for choosing one that won't fit in our house. :) This year we went to a place we've gone to before, but chose one they had already cut. He was fine with that, and we figured it was a nice solution. Beth was home yesterday and we decorated it. Beautiful.
Little things happen that remind us that progress is always being made. Yesterday Steve "scratched" some instant lottery tickets and removed all of the coating. In the past he'd make a few scratches and think it was done. I know that doesn't sound like much, but it's all good stuff. We also play Rummikub and Battleship often, and it's so obvious from playing them that his "left side neglect" issue is always improving. Every so often, Gail and Grams play Poker with Steve. He hasn't lost his touch for bluffing as they will attest!
I'm off work for two weeks now, and am so thankful to have this time at home, and the chance to go to therapy. On Monday Steve will see a different speech therapist and we're hoping for some good ideas from her. Prayers, please! During this time we're also hoping to take him to a gym (thanks, Jennie!) to try some of the equipment there. Rob has been talking to his PT about creating a table to have at home for stretching, so we're hoping to get started on that as well.
This will be a very different Christmas for us, but one that we are so thankful to be celebrating. As always we think of, and are so grateful for, all the people who have helped get Steve to this point. Blessings to all of you! Have a wonderful Christmas.
Love,
Linda
Saturday, December 6, 2008
Update #100 from Linda
Hello! I hope life is good for all of you, and that you all had a nice Thanksgiving.
We took Steve to Muskegon after having a great dinner on Thanksgiving, stayed in a hotel, and spent the next afternoon at Aunt Jean's house visiting with lots of aunts, uncles, and cousins. Steve has such a connection to those people and that part of the state...it was wonderful therapy for him (and us!). We did a little driving around to see some familiar places, scooped up a bag of beach sand, spent the night at the hotel, and drove home Saturday. Such a nice time.
We are so often reminded that Steve has wonderful friends. People that stay in touch, include him in things, and take time out of busy schedules for him. You know who you are, and we thank you for that. So does Steve.
We're often asked about communicating with Steve. Please know that he reads all of your text messages, but doesn't always respond. He keeps his phone handy and checks it often, so please keep those messages coming! He truly looks forward to them. As far as email goes, he gets on his computer every few days, but usually needs help reading those notes. It might be a vision issue...not sure. You might want to keep them short and know that he loves to get them, but probably won't respond. I realize this makes things a little one-sided, but thanks for your understanding. You just can't IMAGINE how important contact with his friends is to him.
We are in the process of ordering a portable communication device for him to try. It's something that allows him to type messages using an on-screen keyboard, push a button, and the message is read out loud (by a voice named "Mike"!). This will give him the chance to hear his words said out loud, and he seems to like that. It will also give him the chance to "talk" on the phone, although the process is very slow. The other thing they think it will do is allow him to repeat these messages himself, which will hopefully help with his speaking. We're hoping to have this in a few weeks.
Last night Rob brought us a drink from Starbucks...Steve had his favorite white chocolate mocha with skim milk :) and drank the entire thing. We were remembering the first time he had one during the summer and managed about a teaspoon or two of it. This time he took the top off the cup and slurped every drop with a straw! Sometimes it's easy to lose sight of the progress he's making, and then a little thing like that happens to remind us.
We're asking for prayers for "Matt" who is a good friend of one of Steve's very good friends. He visited Steve in the hospital and compared scars and stories with him. He's facing very serious new health challenges now...please send energy and prayers to him. Thanks.
As always, thanks for EVERYTHING. Stay warm and take care of yourselves and each other!
Love,
Linda
We took Steve to Muskegon after having a great dinner on Thanksgiving, stayed in a hotel, and spent the next afternoon at Aunt Jean's house visiting with lots of aunts, uncles, and cousins. Steve has such a connection to those people and that part of the state...it was wonderful therapy for him (and us!). We did a little driving around to see some familiar places, scooped up a bag of beach sand, spent the night at the hotel, and drove home Saturday. Such a nice time.
We are so often reminded that Steve has wonderful friends. People that stay in touch, include him in things, and take time out of busy schedules for him. You know who you are, and we thank you for that. So does Steve.
We're often asked about communicating with Steve. Please know that he reads all of your text messages, but doesn't always respond. He keeps his phone handy and checks it often, so please keep those messages coming! He truly looks forward to them. As far as email goes, he gets on his computer every few days, but usually needs help reading those notes. It might be a vision issue...not sure. You might want to keep them short and know that he loves to get them, but probably won't respond. I realize this makes things a little one-sided, but thanks for your understanding. You just can't IMAGINE how important contact with his friends is to him.
We are in the process of ordering a portable communication device for him to try. It's something that allows him to type messages using an on-screen keyboard, push a button, and the message is read out loud (by a voice named "Mike"!). This will give him the chance to hear his words said out loud, and he seems to like that. It will also give him the chance to "talk" on the phone, although the process is very slow. The other thing they think it will do is allow him to repeat these messages himself, which will hopefully help with his speaking. We're hoping to have this in a few weeks.
Last night Rob brought us a drink from Starbucks...Steve had his favorite white chocolate mocha with skim milk :) and drank the entire thing. We were remembering the first time he had one during the summer and managed about a teaspoon or two of it. This time he took the top off the cup and slurped every drop with a straw! Sometimes it's easy to lose sight of the progress he's making, and then a little thing like that happens to remind us.
We're asking for prayers for "Matt" who is a good friend of one of Steve's very good friends. He visited Steve in the hospital and compared scars and stories with him. He's facing very serious new health challenges now...please send energy and prayers to him. Thanks.
As always, thanks for EVERYTHING. Stay warm and take care of yourselves and each other!
Love,
Linda
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