Hello! I hope life is good for all of you. Have a few things on my mind...
First of all, Steve's birthday celebrations. Those were important days for Steve and so many others. Last year I remember being in his room in Maryland and a group of nurses came in to sing "Happy Birthday" to him. At the end one of the nurses added "and many more!" Things were so uncertain at that time, but I remember saying "That is our plan." This year he had fun, food, visitors, etc. etc. and it was such a reminder of how far he has come. I wish I had time to write notes to all who participated in those days. There were so many people who worked so hard to make them happen, people who visited from near and far, people who brought food and gifts, people who sent cards and notes. Please know how important and valued your efforts are. It really is impossible to put it into words. We've attached a few pictures taken at those celebrations.
First of all, Steve's birthday celebrations. Those were important days for Steve and so many others. Last year I remember being in his room in Maryland and a group of nurses came in to sing "Happy Birthday" to him. At the end one of the nurses added "and many more!" Things were so uncertain at that time, but I remember saying "That is our plan." This year he had fun, food, visitors, etc. etc. and it was such a reminder of how far he has come. I wish I had time to write notes to all who participated in those days. There were so many people who worked so hard to make them happen, people who visited from near and far, people who brought food and gifts, people who sent cards and notes. Please know how important and valued your efforts are. It really is impossible to put it into words. We've attached a few pictures taken at those celebrations.
We recently had a change in our insurance, which about sent us all into heart failure. But then many people stepped up to the challenge of helping us figure things out. I'm talking about people from my employer, union, insurance company, rehab people, and doctors. In the end it all worked out because people were willing to go the extra mile. Thank you all.
Our home modifications are rolling along thanks to our friend Les and others. I'm sure this job is a bit of a nightmare for them...paperwork, scheduling, etc. But in the end we'll have two very important things - a safe entrance from our garage to our house, and a bathroom that's accessible to Steve. Huge things. Blessings to all who have been involved in this project. And a huge thanks to my mom, who has been here every day to keep the dog under control and keep Steve company, among many other things. We truly couldn't have made this happen without you, Mom!
We met with nutritionists and evaluated what Steve eats and drinks, vitamins, and takes through his feeding tube. They helped us put it all together and add some supplements that he was lacking, although there weren't many. He still needs the tube for water, as thin liquids are something he struggles with, and he needs lots of water. But our goal is to get him off the tube as far as feeding goes. We/He will have a party on that day! We constantly try different things with amounts and timing of tube feeding/water to come up with the best plan.
Therapy is rolling along. We are discussing ways in which to maximize the therapy he receives on days he is there (3 days per week). The challenge is that it's a long drive and daily routines (dressing, eating, etc.) take a very long time, and there are just so many hours in a day! But we are all committed to making this work. We continue to go to the gym twice each week...Tuesdays and one day each weekend. If anyone ever wants to come along to cheer Steve on, please give us a call! We consider the use of this gym such a huge blessing in Steve's life.
We are always looking for new ideas. For example the other day I ran into Steve's fourth grade teacher, and she told me about a type of alternative treatment for TBI her brother (a doctor) is involved with. We run everything by his doctors, but please let us know if you have any thoughts or suggestions!
There are so many unsung heroes involved in helping Steve recover. My fear is that, if I tried to make a list I would forget someone, and would feel terrible about that. I hope you know who you are. So often we sit here completely stunned by kind things people do for all of us. You just can't imagine how many good people there are in the world, doing things for others without looking for any recognition or thanks. But thank you.
The Dynavox ("talking machine") has turned out to be a very positive thing. There was a battery problem, but a new one arrived yesterday, so use of this device should now be easier. One of the techniques they're now using in Speech is to have Steve "mouth" everything he says even if there is no voice. We are getting pretty good at lip reading! They also just started having him hum before speaking to help with voice. It's so reassuring to us to have therapists, Speech and others, who are constantly trying new things.
I won't deny that we have scary, frustrating moments. But good things happen every day, and we are so thankful for that. Thanks for continuing to keep Steve in your thoughts and prayers. It means so much.
Our home modifications are rolling along thanks to our friend Les and others. I'm sure this job is a bit of a nightmare for them...paperwork, scheduling, etc. But in the end we'll have two very important things - a safe entrance from our garage to our house, and a bathroom that's accessible to Steve. Huge things. Blessings to all who have been involved in this project. And a huge thanks to my mom, who has been here every day to keep the dog under control and keep Steve company, among many other things. We truly couldn't have made this happen without you, Mom!
We met with nutritionists and evaluated what Steve eats and drinks, vitamins, and takes through his feeding tube. They helped us put it all together and add some supplements that he was lacking, although there weren't many. He still needs the tube for water, as thin liquids are something he struggles with, and he needs lots of water. But our goal is to get him off the tube as far as feeding goes. We/He will have a party on that day! We constantly try different things with amounts and timing of tube feeding/water to come up with the best plan.
Therapy is rolling along. We are discussing ways in which to maximize the therapy he receives on days he is there (3 days per week). The challenge is that it's a long drive and daily routines (dressing, eating, etc.) take a very long time, and there are just so many hours in a day! But we are all committed to making this work. We continue to go to the gym twice each week...Tuesdays and one day each weekend. If anyone ever wants to come along to cheer Steve on, please give us a call! We consider the use of this gym such a huge blessing in Steve's life.
We are always looking for new ideas. For example the other day I ran into Steve's fourth grade teacher, and she told me about a type of alternative treatment for TBI her brother (a doctor) is involved with. We run everything by his doctors, but please let us know if you have any thoughts or suggestions!
There are so many unsung heroes involved in helping Steve recover. My fear is that, if I tried to make a list I would forget someone, and would feel terrible about that. I hope you know who you are. So often we sit here completely stunned by kind things people do for all of us. You just can't imagine how many good people there are in the world, doing things for others without looking for any recognition or thanks. But thank you.
The Dynavox ("talking machine") has turned out to be a very positive thing. There was a battery problem, but a new one arrived yesterday, so use of this device should now be easier. One of the techniques they're now using in Speech is to have Steve "mouth" everything he says even if there is no voice. We are getting pretty good at lip reading! They also just started having him hum before speaking to help with voice. It's so reassuring to us to have therapists, Speech and others, who are constantly trying new things.
I won't deny that we have scary, frustrating moments. But good things happen every day, and we are so thankful for that. Thanks for continuing to keep Steve in your thoughts and prayers. It means so much.
Love,
Linda
"This is Rob and I approve this message"
