Tonight Doug and I were skimming through the TV Guide, to see what we wanted to watch. Code Black was on at 9:00. We used to like to watch it. It is about a city emergency room. There are lots of life and death decisions that happen second by second. The last two days I have spent time with my two friends, Joanne who is the hospital suffering from paralysis and my friend Sherry who had her hip replaced today. While eating in the cafeteria with Will, Sherry's husband, waiting for Sherry to get out of surgery, a woman came up to our table, and she asked if I remembered her. It was Lisa. She was the woman who helped us transition from St. Al's to Vibra. All these events today reminded me of the tenuous days when Doug was so sick on the ventilator, then on the tube feeding and not being able to move, then being able to sit-up and eat and finally to where he is today. Thinking about Code Black, I thought about how many lives teeter between life and death. I thought about how it does not just depend on what our doctors and nurses do or what we do. Going through these past months I more deeply realized that there is so much that we do not control. I have learned more and more about living in grace.
Driving home tonight I was listening to NPR and heard about a program that studied soldiers that suffered from PTSD. The study showed that many or most of the soldiers recovered because they moved into PTGS, Post Traumatic Growth Syndrome. These soldiers grew out of the trauma and were transformed. In a spiritual sense we talk about transformation. As we come to an end of the Easter season, it seems a good time to think about transformation, and one last time before Pentecost to think about what needs to be or is being transformed in our lives. Many years ago I remember hearing a sermon where the priest said to turn our chariots of iron into chariots of fire. I loved this image and it has stayed with me.
So tonight, my prayer for all of us who have suffered, is to allow our chariots of iron to be transformed into chariots of fire. May we carry that light, that fire, with us, within us, and to others, who need to see the light in the darkness. Amen
Wednesday, May 31, 2017
Tuesday, May 30, 2017
May 30, 2017: Day +190
Today Doug's PT said she thinks he is on the cusp of being able to walk independently with the walker. He feels excited by this. She had him practice walking around the house again today and riding the stationary bike. I surely can see the difference between last week and this week. Each day he becomes a little more independent.
This evening we went to Boise to visit a dear friend who has just been left paralyzed from the sternum down after complications following back surgery. We of course are very concerned for her. She has a wonderful attitude, grounded in faith and full of the spirit. She has set her sights on walking again. Please join us in prayer for Joanne, that she will walk again. She would be so grateful for your prayers.
Tomorrow we have another friend undergoing hip surgery. She has an underlying pulmonary condition. She is very concerned about tomorrow's surgery, however with her ongoing pain, she feels like the surgery is worth the risk. Her doctors have prepared well for her surgery. We pray tonight that her surgery will be successful and that she will feel peaceful, hopeful and filled with grateful anticipation of being restored to wellness.
So many people, with so much on their plates. While Doug and I have been though a lot these past years and months we know we are not alone. Many have a lot on their plates. It is a good reminder that no one should walk alone, that we should draw the circle wide and reach out and help each other. We pray God's blessings for all those in need this night and in the days to come. And we give thanks for God's healing presence in our lives. Amen
This evening we went to Boise to visit a dear friend who has just been left paralyzed from the sternum down after complications following back surgery. We of course are very concerned for her. She has a wonderful attitude, grounded in faith and full of the spirit. She has set her sights on walking again. Please join us in prayer for Joanne, that she will walk again. She would be so grateful for your prayers.
Tomorrow we have another friend undergoing hip surgery. She has an underlying pulmonary condition. She is very concerned about tomorrow's surgery, however with her ongoing pain, she feels like the surgery is worth the risk. Her doctors have prepared well for her surgery. We pray tonight that her surgery will be successful and that she will feel peaceful, hopeful and filled with grateful anticipation of being restored to wellness.
So many people, with so much on their plates. While Doug and I have been though a lot these past years and months we know we are not alone. Many have a lot on their plates. It is a good reminder that no one should walk alone, that we should draw the circle wide and reach out and help each other. We pray God's blessings for all those in need this night and in the days to come. And we give thanks for God's healing presence in our lives. Amen
Monday, May 29, 2017
May 29, 2017: Day +189
It it Memorial Day and we just spent 3 days in the mountains in our Tiny Home. Luckily when we got it we had it made so that it is assessable. We are very comfortable there. Angie came with us, with our grandson Cole who is nine and two, four year-old foster grandson's Jordan and Trey. It was wonderful to get out of town and to have time with our family.
Doug and I have had so little recreation for a very long time. It was fun to have some relaxation and play time. Doug was able to get on his large scooter and get out on the trails next to the lake and along the river with us. I got to play with the kids and Angie in the water and we all enjoyed meals on the deck and naps in the afternoon.
Doug is doing so well with transfers. I helped him to a stand with his walker and went to get his wheelchair about 15 feet away. I turned around and he was walking toward me on his own. He was able to walk the full way to the chair and then to sit in his chair. After he did that, Angie and decided it was time for him start walking between his reclining chair and his scooter on the deck. He was happy to try. He has come a long way in the last week.
Just the previous night before Doug walked on his own, he said he would be really happy if he could walk with a walker in a year. Well, it sure looks like he is going to do better than that. I think he is finally able to see his own potential and to set his own goals a little higher.
We pray:
God of Resurrection and Hope, we are thankful for having time to relax and time to re-create. We are thankful for time to rest and for time to play. We are thankful for answered prayers. We thank you for the joyful spirits of children and for a daughter who gives of herself and of her time. Be with us now as we return home and return to work. Watch over our children as they finish this school year and watch over Doug as he continues to improve. In your name we ask it. Amen
Doug and I have had so little recreation for a very long time. It was fun to have some relaxation and play time. Doug was able to get on his large scooter and get out on the trails next to the lake and along the river with us. I got to play with the kids and Angie in the water and we all enjoyed meals on the deck and naps in the afternoon.
Doug is doing so well with transfers. I helped him to a stand with his walker and went to get his wheelchair about 15 feet away. I turned around and he was walking toward me on his own. He was able to walk the full way to the chair and then to sit in his chair. After he did that, Angie and decided it was time for him start walking between his reclining chair and his scooter on the deck. He was happy to try. He has come a long way in the last week.
Just the previous night before Doug walked on his own, he said he would be really happy if he could walk with a walker in a year. Well, it sure looks like he is going to do better than that. I think he is finally able to see his own potential and to set his own goals a little higher.
We pray:
God of Resurrection and Hope, we are thankful for having time to relax and time to re-create. We are thankful for time to rest and for time to play. We are thankful for answered prayers. We thank you for the joyful spirits of children and for a daughter who gives of herself and of her time. Be with us now as we return home and return to work. Watch over our children as they finish this school year and watch over Doug as he continues to improve. In your name we ask it. Amen
Thursday, May 25, 2017
May 25, 2017: Day 185
Thanks to everyone cheering Doug and Kirsten on today. It would be more than wonderful and more than worth it to take a trip to Hawaii for the "play-offs." It was fun to read some of the comments of our friends who had HSCT in November with us. You know friends and caregivers, maybe we should think of play-offs and reunion. It is great to share this journey. We heard from our friend Karin from Paris, France today. She is soon going to be entering a rehabilitation center. We are praying for Karin and hoping that her therapy is successful for her. And we heard from some of the other caregivers, Leanne and Rita, willing to be the water girls and calling the race. We heard from Christy and Jackie our Michigan friends who regularly share their progress and their journey. Isn't it wonderful to hear of the stories of hope and perseverance? Just a year ago, before HSCT, most of us were holding our breath in fear of the next loss or exasperation. Now we have hope.
Today when I came home Doug told me that OT assistant said that last week would be her last week. I said "Really, no one has talked to me about that." So I sent a text to his nurse and the OT. I learned that indeed that is the plan. Apparently Doug has met his goals. Of course I see all the things he still needs help with. This felt very similar to when Doug was in rehab. The therapists set goals and monitor their goals but we never know what they are. This is so different then my world of Special Education. We are required by law to set goals with parents/adult students before we begining therapy and we have to report progress. I don't understand why this is not required in the medical field. Maybe some day I will figure this out.
But here is the good news. Doug keeps meeting his goals. He keeps making progress. We are so grateful for that. And the difference this time, is that I am not afraid anymore of how I will care for him at home. I know that we can do this now. We have very little help. And I know that Doug's transfers are going well enough. I know that I can now get him to out-patient therapy if I need to. We will wait for now to hear word of how long he will have PT and the nurse.
One thing I do know, is that hope is important. The OT mentioned that Doug may always need certain supports because of his MS. I told her that since Doug had HSCT we don't know the limits of what he will do over the next months. First, we have to get through his recovery from poly-neuropathy. Then, we will have a better sense of the skills he may recover after HSCT. But one thing I know for sure...we won't let MS write his future. We are MS warriors. And MS won't beat us, not yet.
And so we pray:
God with Us, for Us, and guiding Us, we thank you for putting us on a journey of resurrection and hope. We thank you for all those around us that are filled with belief and hope. We are thankful for instilling in us with a sense of belief and hope. We pray that you will continue to surround us with friends who will dream with us and and will support us and travel with us on this journey. In your name we ask it. Amen
Today when I came home Doug told me that OT assistant said that last week would be her last week. I said "Really, no one has talked to me about that." So I sent a text to his nurse and the OT. I learned that indeed that is the plan. Apparently Doug has met his goals. Of course I see all the things he still needs help with. This felt very similar to when Doug was in rehab. The therapists set goals and monitor their goals but we never know what they are. This is so different then my world of Special Education. We are required by law to set goals with parents/adult students before we begining therapy and we have to report progress. I don't understand why this is not required in the medical field. Maybe some day I will figure this out.
But here is the good news. Doug keeps meeting his goals. He keeps making progress. We are so grateful for that. And the difference this time, is that I am not afraid anymore of how I will care for him at home. I know that we can do this now. We have very little help. And I know that Doug's transfers are going well enough. I know that I can now get him to out-patient therapy if I need to. We will wait for now to hear word of how long he will have PT and the nurse.
One thing I do know, is that hope is important. The OT mentioned that Doug may always need certain supports because of his MS. I told her that since Doug had HSCT we don't know the limits of what he will do over the next months. First, we have to get through his recovery from poly-neuropathy. Then, we will have a better sense of the skills he may recover after HSCT. But one thing I know for sure...we won't let MS write his future. We are MS warriors. And MS won't beat us, not yet.
And so we pray:
God with Us, for Us, and guiding Us, we thank you for putting us on a journey of resurrection and hope. We thank you for all those around us that are filled with belief and hope. We are thankful for instilling in us with a sense of belief and hope. We pray that you will continue to surround us with friends who will dream with us and and will support us and travel with us on this journey. In your name we ask it. Amen
Wednesday, May 24, 2017
May 24, 2017: Day 184
Today was filled with positive uplifting events. First thing when I awoke this morning, I had a message from our friend Kirsten in Australia. She went through HSCT with Doug. So many people often ask how the others are doing that went through HSCT at the same time as Doug. I am really happy to say no one that we know of has had the difficulties Doug has had. And of course everyone is asking if the other people are seeing improvement. First, it is important to know that the most important part of going through HSCT when you have MS is to stop the progression of MS. The next hope then, is that you might recover some of the skills that you have lost. Of course everyone hopes they will recover skills. Most people begin to see the most recovery of skills between 9 months and two years after HSCT. Some people see improvement right away and some are seeing improvement up to 5 years after HSCT. It varies...
But let me tell you about Kirsten. Kirsten has had serious exasperation's with her MS. She has spent weeks at a time in the hospital, unable walk and with limited mobility. When we were with her she used a cane and a wheelchair some days and when she need to go some distance. In the video she sent me today it showed Kirsten doing sprints with her therapist and seeing how far she could jump with the therapist measuring her distance. It was incredible. She was sprinting without a cane. Her balance looked great. There was no stiffness in her legs. Doug and I were both overjoyed. I am smiling now, writing this. She has challenged Doug to a race. I told her we would meet in Hawaii for this match. Wouldn't that be something! Well Kirsten, you are on. Consider it a challenge!
Then today, Will and Doug's PT Kerry, recorded Doug walking with his walker around the house. With less than 50% support from Kerry. They wanted me to be able to see what he could do. I am going to try to get it posted to Facebook tomorrow. He is making such improvements! Tonight when I helped Doug in the bathroom with his walker, I only needed to help him to stand and he moved the walker on his own with me only being there for support if needed. In the last week he has made great improvement.
And so we pray:
God of Resurrection, during this season of Easter, we look to you for your model of transformation and new life. What seemed impossible became possible. We give thanks for the transformation of Doug and Kirsten and for all of our friends going through this in their lives. We give thanks for their courage to step-out and search for the opportunity to heal and then to do the hard work, day after day that is required in any great transformation. And God, we give thanks for all the torch bearers in our lives that dare to hope with us and hold us in prayer and love. Amen
But let me tell you about Kirsten. Kirsten has had serious exasperation's with her MS. She has spent weeks at a time in the hospital, unable walk and with limited mobility. When we were with her she used a cane and a wheelchair some days and when she need to go some distance. In the video she sent me today it showed Kirsten doing sprints with her therapist and seeing how far she could jump with the therapist measuring her distance. It was incredible. She was sprinting without a cane. Her balance looked great. There was no stiffness in her legs. Doug and I were both overjoyed. I am smiling now, writing this. She has challenged Doug to a race. I told her we would meet in Hawaii for this match. Wouldn't that be something! Well Kirsten, you are on. Consider it a challenge!
Then today, Will and Doug's PT Kerry, recorded Doug walking with his walker around the house. With less than 50% support from Kerry. They wanted me to be able to see what he could do. I am going to try to get it posted to Facebook tomorrow. He is making such improvements! Tonight when I helped Doug in the bathroom with his walker, I only needed to help him to stand and he moved the walker on his own with me only being there for support if needed. In the last week he has made great improvement.
And so we pray:
God of Resurrection, during this season of Easter, we look to you for your model of transformation and new life. What seemed impossible became possible. We give thanks for the transformation of Doug and Kirsten and for all of our friends going through this in their lives. We give thanks for their courage to step-out and search for the opportunity to heal and then to do the hard work, day after day that is required in any great transformation. And God, we give thanks for all the torch bearers in our lives that dare to hope with us and hold us in prayer and love. Amen
Tuesday, May 23, 2017
May 23, 2017
When I walked the Camino a couple of years ago, I wrote lessons learned in my blog each day. One lesson I learned again and again, was to do hard things. When you do hard things and you accomplish them it is such a wonderful sense of achievement. It also leads you to places you that bless you and teach you.
Yesterday, when Doug walked the full length of the our property, he did a very hard thing and he accomplished it. When he is standing and transferring it is scary for him. He is afraid of falling. He is still fairly weak. But, I think that yesterday, having accomplished that walk, he feels more confident. Tonight when he was transferring and had to walk a few steps, turn around and sit down, he moved the walker on his own and did not need any real help from me. To think, it was just a couple weeks ago we were using the disk to turn him on to transfer him, and only a couple of weeks before that we were really struggling with the slider board.
I had a meeting that I had to go to tonight. Doug was able to stay home alone. We have both become much more confident about him staying alone for a while. The full time I was gone, I was able to be completly present in the meeting, not concerned for him. Now I am looking forward to tomorrow. Kerry, his PT will be back tomorrow. I look forward to hearing about what they will accomplish.
Here is quote I found tonight, while reading before bedtime. It spoke to me and I wanted to share it.
"Every blade of grass has its angel that bends over it and whispers, "Grow, grow." - The Talmud
God of Transformation that calls us to grow, we thank you for the opportunities that come to us each day that beckon us to grow. Help us to lean in and see the possibilities. Help us to trust in your goodness and in ourselves. Help us to see what is possible and then to step out and try. In your name we ask it. Amen
Yesterday, when Doug walked the full length of the our property, he did a very hard thing and he accomplished it. When he is standing and transferring it is scary for him. He is afraid of falling. He is still fairly weak. But, I think that yesterday, having accomplished that walk, he feels more confident. Tonight when he was transferring and had to walk a few steps, turn around and sit down, he moved the walker on his own and did not need any real help from me. To think, it was just a couple weeks ago we were using the disk to turn him on to transfer him, and only a couple of weeks before that we were really struggling with the slider board.
I had a meeting that I had to go to tonight. Doug was able to stay home alone. We have both become much more confident about him staying alone for a while. The full time I was gone, I was able to be completly present in the meeting, not concerned for him. Now I am looking forward to tomorrow. Kerry, his PT will be back tomorrow. I look forward to hearing about what they will accomplish.
Here is quote I found tonight, while reading before bedtime. It spoke to me and I wanted to share it.
"Every blade of grass has its angel that bends over it and whispers, "Grow, grow." - The Talmud
God of Transformation that calls us to grow, we thank you for the opportunities that come to us each day that beckon us to grow. Help us to lean in and see the possibilities. Help us to trust in your goodness and in ourselves. Help us to see what is possible and then to step out and try. In your name we ask it. Amen
Monday, May 22, 2017
May 22, 2017: Day +182
This afternoon while at work I got a surprise text from Doug's PT. She said that Doug had just walked the full length of our property on the sidewalk using his walker. Last night my prayer was that he would be able to walk with his walker this week. I had no idea it would happen today. She said that he needed about 50% assistance. I am not sure how that looked, but she also told me that she was so excited to be able to show me. I am excited too. Her news brought me to tears. This is such a big milestone and such an answer to prayer.
Not long after that she sent me a text telling me that Doug was riding the stationary bike, another big milestone. We have had the bike for a long time. He use to regularly ride the bike for exercise, but not since he got sick in December. When he first got home he did not have the balance to sit on the bike, or the ability to swing his leg over the center console. With a little help from his PT today, he was able to get his leg over and to ride independently for 5 minutes. We were all excited he still had the energy to get on and ride the bike after he had walked outside. His endurance and skills are increasing.
One more bit of good news, Doug's heart rate was down. When she took it today it was 83. Much better than last week.
And so we pray:
God with us, we give thanks for your presence in our lives. We give thanks for hearing our prayers and answering our petitions. We give thanks for Doug's walking and riding the stationary bicycle. Once again our faith and hope have been bolstered with Doug's progress. We pray for continued progress and continued strength to persevere even when the tasks are so difficult. In your name we ask it. Amen
Not long after that she sent me a text telling me that Doug was riding the stationary bike, another big milestone. We have had the bike for a long time. He use to regularly ride the bike for exercise, but not since he got sick in December. When he first got home he did not have the balance to sit on the bike, or the ability to swing his leg over the center console. With a little help from his PT today, he was able to get his leg over and to ride independently for 5 minutes. We were all excited he still had the energy to get on and ride the bike after he had walked outside. His endurance and skills are increasing.
One more bit of good news, Doug's heart rate was down. When she took it today it was 83. Much better than last week.
And so we pray:
God with us, we give thanks for your presence in our lives. We give thanks for hearing our prayers and answering our petitions. We give thanks for Doug's walking and riding the stationary bicycle. Once again our faith and hope have been bolstered with Doug's progress. We pray for continued progress and continued strength to persevere even when the tasks are so difficult. In your name we ask it. Amen
Sunday, May 21, 2017
May 21, 2017: Day +181
Today when Doug woke up his heart rate was 86, much lower than all last week. The medicine is working. It was really nice not to worry about it today. For the past 10 days Doug's activity has been restricted because of the concern of his heart rate increasing with activity. With decreased activity I have been concerned that he will loose ground in his improvements. Yesterday afternoon, after Doug had 2 doses of the medication we did his standing exercises because his heart rate was about 100. He was able to stand for 5 minutes, 3 times. I was really glad he could still do this. Then this morning, getting into the car, Doug was able to pull himself to a stand and get into the car by himself. I only held the door. This is a huge improvement. Six weeks ago when he got out of rehabilitation they were not even recommending Doug riding in a car. Now look at him today!
Another improvement over the past few days, is that Doug has been able to use the walker to come to a stand with me holding it and he can now turn by taking steps and transferring himself to another chair. And this may be too much information, but it is a big deal for us, but Doug is now able to get into the bathroom and use the toilet rather than the commode. All these things improve the quality of Doug's life and make my job easier. We are both grateful.
And so we pray:
God of Healing and Transformation, we give thanks for the lowering of Doug's heart rate and the strengthening of his body. We give thanks for the little improvements that make our life easier and sustain our hope as we look forward to Doug's continued healing. Be with him this week as he returns to a normal therapy schedule. And God, we pray that this will be the week that he can begin to walk with a walker. In your name we ask it. Amen
Another improvement over the past few days, is that Doug has been able to use the walker to come to a stand with me holding it and he can now turn by taking steps and transferring himself to another chair. And this may be too much information, but it is a big deal for us, but Doug is now able to get into the bathroom and use the toilet rather than the commode. All these things improve the quality of Doug's life and make my job easier. We are both grateful.
And so we pray:
God of Healing and Transformation, we give thanks for the lowering of Doug's heart rate and the strengthening of his body. We give thanks for the little improvements that make our life easier and sustain our hope as we look forward to Doug's continued healing. Be with him this week as he returns to a normal therapy schedule. And God, we pray that this will be the week that he can begin to walk with a walker. In your name we ask it. Amen
Friday, May 19, 2017
May 19, 2017: Day 179
Today Doug is celebrating his 6 month, 1/2 year birthday, since his Stem Cell Transplant. What a journey it has been. The first days after Doug's transplant he showed some immediate improvement. His walking got much easier and he much more easily stood-up and sat-down. Then just 3 weeks after his transplant he was hospitalized. And 3 weeks after that he was taken off the ventilator and awoke paralyzed. It has been a long fight back. I look at him and think of how far he has come and it feels good to see the improvements. And other times I am reminded of how disabled he is. Rolling over is very difficult, he can't stand without support, he does not have consistent bowl control, he needs help to shower and he wears out easily when trying to be more active. But he is alive and with that he feels more alive each day. The journey has been long and there is a long way to go.
We spent a lot of time this afternoon checking in with his nurse and doctor. We finally got hold of the doctor covering for his regular doctor and got a new prescription to bring down Doug's heart rate. It was higher today, between 111 and 121. Hopefully, we will see his heart rate come down by morning. The good news is that he is not displaying any symptoms with his higher heart rate.
Just a word of thanks and thanksgiving. My son-in-law Tom came over last night and helped me out. I was having trouble getting my new printer to print with my new computer. I felt better when it took Tom a while to figure it out. Tom has a Master's in Technology. It is handy having a son-in-law with this background. While he was here he also helped me to set-up some headphones with our TV so that Doug can listen to the TV and I can have a little quiet. That was a big help. I feel grateful to have help when I need it. We love Tom and it is always nice to have him around.
And so we pray:
Our God who gives us life and love, we are so thankful for things to celebrate and the blessings that come to us each day. We thank you for the opportunity for Doug to have HSCT and for his 6 month anniversary. We thank you for continuing progress and the hope of better days to come. And we are thankful for Tom. We are blessed with a wonderful, talented family who reach out and care for each other. We pray for continued blessing. May Doug continue his healing and may he walk one day soon. Amen
We spent a lot of time this afternoon checking in with his nurse and doctor. We finally got hold of the doctor covering for his regular doctor and got a new prescription to bring down Doug's heart rate. It was higher today, between 111 and 121. Hopefully, we will see his heart rate come down by morning. The good news is that he is not displaying any symptoms with his higher heart rate.
Just a word of thanks and thanksgiving. My son-in-law Tom came over last night and helped me out. I was having trouble getting my new printer to print with my new computer. I felt better when it took Tom a while to figure it out. Tom has a Master's in Technology. It is handy having a son-in-law with this background. While he was here he also helped me to set-up some headphones with our TV so that Doug can listen to the TV and I can have a little quiet. That was a big help. I feel grateful to have help when I need it. We love Tom and it is always nice to have him around.
And so we pray:
Our God who gives us life and love, we are so thankful for things to celebrate and the blessings that come to us each day. We thank you for the opportunity for Doug to have HSCT and for his 6 month anniversary. We thank you for continuing progress and the hope of better days to come. And we are thankful for Tom. We are blessed with a wonderful, talented family who reach out and care for each other. We pray for continued blessing. May Doug continue his healing and may he walk one day soon. Amen
Thursday, May 18, 2017
May 18, 2017
Doug's heart rate remains elevated. It is beating between 103 and 106 beats per minute. Yesterday the doctor had Doug remove a Clonidine patch that he is wearing for blood pressure. We expected her to call with another medication today, but we did not hear anything. He is still taking blood pressure medication. It is just that he had been on 2 different kinds and another to reduce his heart rate. Apparently there is a drug interaction between the Clonodine he was taking and another medication he was taking. I guess the good news is that his heart rate is remaining pretty stable and his blood pressure is good..
Doug surprised me last night. He went into the bedroom by himself in his electric wheelchair. He rolled up next to the bed, pulled himself to a stand with a support we have on the side of the bed, pulled himself to a stand and crawled up on the bed. Now, I would really rather that he had not done that by himself. He had worked with the OT on it earlier in the day and decided that he could now do it on his own. And so he did. All is well that ends well! One more step toward independence.
And so we pray.
Holy Lord we are thankful for these small improvements and steps towards Doug having more independence. We are especially grateful for this improvement since Doug has had less activity this past week while his heart rate has been high. Be with Doug now. We pray for his heart rate to lower, so that he can be more active again, allowing him to increase his physical activity. In your name we ask it. Amen
Doug surprised me last night. He went into the bedroom by himself in his electric wheelchair. He rolled up next to the bed, pulled himself to a stand with a support we have on the side of the bed, pulled himself to a stand and crawled up on the bed. Now, I would really rather that he had not done that by himself. He had worked with the OT on it earlier in the day and decided that he could now do it on his own. And so he did. All is well that ends well! One more step toward independence.
And so we pray.
Holy Lord we are thankful for these small improvements and steps towards Doug having more independence. We are especially grateful for this improvement since Doug has had less activity this past week while his heart rate has been high. Be with Doug now. We pray for his heart rate to lower, so that he can be more active again, allowing him to increase his physical activity. In your name we ask it. Amen
Wednesday, May 17, 2017
May 17, 2017
Opening up the computer tonight I am thinking about healing, being healed and waiting for healing. A dear friend had a seven hour surgery on her back today. She has been in pain for years and had other surgeries for her back. Today we are all hoping and praying that the pain will finally come to an end and she will walk straight and tall.
This journey to healing can be long and difficult. Maintaining hope can be so challenging. I remember that while Doug was in the rehabilitation hospital his physical therapist told him that hope is not a strategy. I found that statement rather upsetting because I think that hope has to be our first strategy. It is what leads us to persevere. It leads us to search for wholeness and healing. Hope sustains us until the healing comes. It keeps us moving forward.
Our dear friend has had the audacity to hope. She has continued to seek healing and to believe in healing. Tonight we pray for her as she begins her recovery. We pray that she will walk upright without pain.
Let us pray.
God who listens to our prayers and sustains our hope, be with our dear friend as she recovers from this long surgery. Surround her with effective doctors and nurses who have the capacity to bring healing and hope. Watch over her husband and family as they keep watch and care for her. And as she awakens may her pain subside, her spirit rest in your spirit and may she be filled with healing and hope. In your name we ask it. Amen
This journey to healing can be long and difficult. Maintaining hope can be so challenging. I remember that while Doug was in the rehabilitation hospital his physical therapist told him that hope is not a strategy. I found that statement rather upsetting because I think that hope has to be our first strategy. It is what leads us to persevere. It leads us to search for wholeness and healing. Hope sustains us until the healing comes. It keeps us moving forward.
Our dear friend has had the audacity to hope. She has continued to seek healing and to believe in healing. Tonight we pray for her as she begins her recovery. We pray that she will walk upright without pain.
Let us pray.
God who listens to our prayers and sustains our hope, be with our dear friend as she recovers from this long surgery. Surround her with effective doctors and nurses who have the capacity to bring healing and hope. Watch over her husband and family as they keep watch and care for her. And as she awakens may her pain subside, her spirit rest in your spirit and may she be filled with healing and hope. In your name we ask it. Amen
Tuesday, May 16, 2017
May 16, 20017: Day +176
Things look a little better for Doug today. His heart rate came down some. It was between 90 and 106 all day. Yesterday at it's highest that we are aware of it was 145 bpm, during his physical therapy. His Home Health nurse came to see him this morning. At the time he was here, from what I know, Doug's heart rate was at it's lowest in two days at around 90 bpm. His nurse was going to contact Doug's doctor, but I have not hear the results of that conversation yet. Taking his blood pressure and heart rate right before bed tonight his blood pressure was in a normal range of 128/88 and his heart rate was 103. This is better than last night, but still a little concerning. We look forward to hearing what the doctor has to say.
Doug seems to feel pretty well even with the increased heart rate. He was able to get onto the bed much more easily tonight. His OT brought a bench for him to stand on so that the bed was not so high. He felt more confident getting onto the bed.
Our friend Kathleen said, about the blog this morning, that the roller-coaster continues. It sure feels that way right now. Our nurse friend Mib, reminds us this heart rate problem is treatable. We are grateful for that.
How do these twists and turns relate to pilgrimage? Like all great journeys, we don't know what the next day will hold. Some days the path seems rough and difficult, and maybe impassable. But then with effort and determination to keep moving, we continue on, one step at a time, until we reach the summit of this mountain.
And so we pray:
God of Valleys and Vistas, be with us during these days of concern and uncertainly. We thank you for the help we have received in these changes in Doug's health, from his nurse and therapists. We thank you for Doug's heart rate being down somewhat today. We pray that his body will stabilize and his heart rate will find normalize without more medication. Be with Doug's doctor and with Doug. Help her to clearly see chow to help Doug recover from this recent set back. In your name we ask it. Amen
Doug seems to feel pretty well even with the increased heart rate. He was able to get onto the bed much more easily tonight. His OT brought a bench for him to stand on so that the bed was not so high. He felt more confident getting onto the bed.
Our friend Kathleen said, about the blog this morning, that the roller-coaster continues. It sure feels that way right now. Our nurse friend Mib, reminds us this heart rate problem is treatable. We are grateful for that.
How do these twists and turns relate to pilgrimage? Like all great journeys, we don't know what the next day will hold. Some days the path seems rough and difficult, and maybe impassable. But then with effort and determination to keep moving, we continue on, one step at a time, until we reach the summit of this mountain.
And so we pray:
God of Valleys and Vistas, be with us during these days of concern and uncertainly. We thank you for the help we have received in these changes in Doug's health, from his nurse and therapists. We thank you for Doug's heart rate being down somewhat today. We pray that his body will stabilize and his heart rate will find normalize without more medication. Be with Doug's doctor and with Doug. Help her to clearly see chow to help Doug recover from this recent set back. In your name we ask it. Amen
Monday, May 15, 2017
May 15, 2017: Day +175
I guess we are not out of the woods yet. The physical therapist called me at work today. She said that she had measured Doug's heart rate a couple of times and that it was beating at about 120 beats a minute. She had called the doctor. Our doctor is not in the office today. The doctor taking her calls recommended bringing him down to the E.R. Doug said he was feeling fine and the physical therapist said he was not presenting with any other symptoms. I told her that I thought we should we wait and that I would take his heart rate again when I got home. And sure enough when I took it when I got home it was 120 bpm.
I am not too surprised by this raise in his heart rate. His doctor has been weaning him from taking metoprolol. This medication has been given him for blood preasure and heart rate since he was very sick in December. It had been lowering his heart rate too much. And so she gave him half the dossage and then took him completely off it, with Saturday being his last day. It looks to me like he will need to start it again.
Neither Doug or I felt like he needed to go to the E.R. His blood preasure is good. I will call his doctor first thing again in the moring. Hopefully we can get this all figured out again by tomorrow afternoon. I am disappointed that his heart rate has climbed back up. I was really hoping that everything would be back to normal with his heart and he would not need this medication anymore.
And so we pray:
God of Comfort and Healing, be with Doug this night, tomorrow and in the days to come. Slow the beating of his heart. Give him comfort and confidence in your healing power. Be with his doctor as she works to find the right medications for him that will return him to wellness. And be with us as we sleep this time. Give us your comfort. May our sleep be peaceful, resting in your strength and the power of your will. Amen
I am not too surprised by this raise in his heart rate. His doctor has been weaning him from taking metoprolol. This medication has been given him for blood preasure and heart rate since he was very sick in December. It had been lowering his heart rate too much. And so she gave him half the dossage and then took him completely off it, with Saturday being his last day. It looks to me like he will need to start it again.
Neither Doug or I felt like he needed to go to the E.R. His blood preasure is good. I will call his doctor first thing again in the moring. Hopefully we can get this all figured out again by tomorrow afternoon. I am disappointed that his heart rate has climbed back up. I was really hoping that everything would be back to normal with his heart and he would not need this medication anymore.
And so we pray:
God of Comfort and Healing, be with Doug this night, tomorrow and in the days to come. Slow the beating of his heart. Give him comfort and confidence in your healing power. Be with his doctor as she works to find the right medications for him that will return him to wellness. And be with us as we sleep this time. Give us your comfort. May our sleep be peaceful, resting in your strength and the power of your will. Amen
Sunday, May 14, 2017
May 14, 2017: Day +174
My daughter-in-law Corinne surprised me this week with a gift. She sent me an album with all the the activities of the boys and Dan and Corinne. I love it! With them in San Diego we don't get to participate in their lives. It is really wonderful to have the album to enjoy all of their adventures. And they so sweetly sent me a check to do something for me. I am blessed.
We enjoyed going to church with Angie and Tom and the kids including our foster grandsons, and Tom's parents. After church we had a first, we all went to McDonald's. The kid's got to play on the playground and moms eat free on Mother's Day. Wow! No mimosas, but it was easy, no fuss and fun for everyone. Angie and Tom gave me a lovely bottle of wine, lovely smelling herbs to plant and a darling card with pictures of all the kids with sweet notes from all of them. Lovely.
Then my sister Kate, came by this afternoon with a check in hand. She wanted to pay off the rest of our loan for Doug's HSCT. What a blessing and an end to a perfect day. No more worries about stretching dollars to pay for Doug's current care and paying off his stem cell transplant. Heart warming.
It was a big day. Doug was tired by this evening. He is snoring softly right now. But before saying good-night, my last thoughts are of our mothers. Of all they did for us and gave to us. We loved them and miss them. They will forever be in our hearts. Grateful.
God of Grace, Mother of us all, thank you for the tender mercies of this day. Thank you for a beautiful family. Thank you for friends to share the day and memories with. How grateful I am to be a mother, a mother-in-law, a step-mother, a grandmother, a foster grandmother, a sister, an aunt and a daughter. I am so grateful for all the women in our lives that mother in all of its manifestations. I am so grateful for my own mother. Thank you God for tenderly loving us, caring for us, nourishing us and showing us how to love one another. Watch over those we love, protect them with your open arms and loving embrace. In your name we ask it. Amen
Saturday, May 13, 2017
May 13, 2017: Day +173
I missed posting yesterday. This past week was a big week, with lots to do and by Friday night I was wearing down. After catching up around the house and taking care of Doug, it was after 10. I usually love to watch the news and the late night monologues on TV, but last night when I got in bed, I was ready for sleep. Ironically, this was the first night that Doug was awake longer than me. He turned off the TV. I have been noticing that he is not as fatigued as he has been in the past. And there are a couple of other things I was thinking about today. He has not had a migraine or dizziness since his stem cell transplant. These seem like good signs and hopeful signs that the progression of his MS may have stopped.
This afternoon we met Angie and Tom, and their kids at the Crooked Fence on Highway 16. As the kids played outside on the lawn we enjoyed sampling some of the brews and sharing some tasty food. This was our preliminary Mother's Day celebration. It was fun. Doug ate his first raw carrot and piece of celery in 6 months. For the past 6 months because of his compromised immune system he has not been able to eat any raw fruits and vegetables. We decided our Mother's Day celebration would be the day we would celebrate this milestone even though his actual 6 month anniversary is on the 19th. Honesty, I don't think he suffered too much since he really is not that fond of vegetables. It really was was a celebration, because he has now passed another big milestone.
And so we pray:
God of Resurrection and New Life, We give thanks for healing. With the passage of the last 6 months, while the challenges have been great there have been bright streams of light in the darkness. That light shines brightly in the presence of family and the playing with children. It is reflected in Doug's increased energy, being pain free and eating a full and healthy diet. We give thanks for our kids, their spouses, our grand children and our foster grandchildren. We give thanks for our moms, for all they did for us and for all the memories they gave us. Amen
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| Angie and Tom at the Brewery |
This afternoon we met Angie and Tom, and their kids at the Crooked Fence on Highway 16. As the kids played outside on the lawn we enjoyed sampling some of the brews and sharing some tasty food. This was our preliminary Mother's Day celebration. It was fun. Doug ate his first raw carrot and piece of celery in 6 months. For the past 6 months because of his compromised immune system he has not been able to eat any raw fruits and vegetables. We decided our Mother's Day celebration would be the day we would celebrate this milestone even though his actual 6 month anniversary is on the 19th. Honesty, I don't think he suffered too much since he really is not that fond of vegetables. It really was was a celebration, because he has now passed another big milestone.
And so we pray:
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| Doug enjoying his vegetables---NOT |
God of Resurrection and New Life, We give thanks for healing. With the passage of the last 6 months, while the challenges have been great there have been bright streams of light in the darkness. That light shines brightly in the presence of family and the playing with children. It is reflected in Doug's increased energy, being pain free and eating a full and healthy diet. We give thanks for our kids, their spouses, our grand children and our foster grandchildren. We give thanks for our moms, for all they did for us and for all the memories they gave us. Amen
Thursday, May 11, 2017
May 11, 2017: Day +171
The days have developed their own rhythm. It is amazing how much comfort can be found in routines. When we first thought of coming home, with the long list of what Doug would need to have done for him, it seemed endless and stressful. Now that he has been home over a month the stress has been overcome with routine and ritual. We are no longer using the Hoyer. Doug can brush his own teeth at the kitchen sink, since he can't get in the bathroom with his big wheelchair and he can take his pills on his own when given to him. He is doing a standing transfer into chairs and bed. We use a gate belt and I help to pull him to a stand and he makes small steps into the chair or bed. While caring for Doug is still a lot of work, it is definitely less than last month.
Today I went back out to the Knights of Columbus. Kerry, Doug's PT is encouraging him to get out of his electric wheelchair into a regular wheelchair so that he can manually move around. This will give him more exercise. Since we don't have a regular wheelchair I needed to see if I could get one. Dale, at Knights of Columbus asked me if Doug was a veteran. I told him yes. He disappeared and came back with a brand new wheelchair for him. It is yellow. It seems a little bold for Doug, but I was not going to complain. After all it is brand new and exactly what Doug needs. I am so impressed with the ministry of the Knights of Columbus. They have saved us thousands of dollars and it is wonderful that there is a place where people can donate things they no longer use and a place for people to get expensive items they may need for a long time or a short time. We are so thankful for this ministry.
And so we pray:
Holy God, of Continuous Journey, we give you thanks for paths that lead us on each day. We give you thanks for routines and rituals that provide predictability and a rhythm to our day. We give you thanks for inspiring men and women to ministry. We are especially thankful for the ministry of the Knights of Columbus; for their dedication to filling health care gaps. Be with Doug tomorrow as he attempts new exercises and in beginning to use his new wheelchair that will help him to become stronger and strengthen his independence. Amen
Today I went back out to the Knights of Columbus. Kerry, Doug's PT is encouraging him to get out of his electric wheelchair into a regular wheelchair so that he can manually move around. This will give him more exercise. Since we don't have a regular wheelchair I needed to see if I could get one. Dale, at Knights of Columbus asked me if Doug was a veteran. I told him yes. He disappeared and came back with a brand new wheelchair for him. It is yellow. It seems a little bold for Doug, but I was not going to complain. After all it is brand new and exactly what Doug needs. I am so impressed with the ministry of the Knights of Columbus. They have saved us thousands of dollars and it is wonderful that there is a place where people can donate things they no longer use and a place for people to get expensive items they may need for a long time or a short time. We are so thankful for this ministry.
And so we pray:
Holy God, of Continuous Journey, we give you thanks for paths that lead us on each day. We give you thanks for routines and rituals that provide predictability and a rhythm to our day. We give you thanks for inspiring men and women to ministry. We are especially thankful for the ministry of the Knights of Columbus; for their dedication to filling health care gaps. Be with Doug tomorrow as he attempts new exercises and in beginning to use his new wheelchair that will help him to become stronger and strengthen his independence. Amen
Wednesday, May 10, 2017
May 10, 2017: Day +170
Today I had to work a full day. That left Doug on his own part of the day. De, a care provider we have on Wednesday and Thursday mornings helped Doug get up and get dressed. His PT was here mid morning and Jerry, a friend visited this afternoon. I felt much better knowing that someone was with him off and on throughout the day. The good news is that Doug did fine throughout the day. His days have developed their own rythmn. I think he enjoys some alone time, especially after so many months in the hosptial.
Doug felt good about his physical therapy today. He said that he walked with the parallel bars and did some exercies. He said that on Friday his physical therapist wants to try getting Doug on our exercise bike. Untill now, Doug has not had the balance or control to lower his body onto the bike, balance on the bike and swing his leg over the middle of the bike to the other side. She thinks he is ready for this now and so we will see. It is a blessing to have continued progress.
And so we pray:
Merciful God, we thank you for your presence with us. Thank you for the assurance that all will be well and all is well. We are thankful for days that go well, with the promise of better days to come. Be with Doug as he becomes more independent. Encourage him when he becomes impatient or discouraged. Sustain his hope. Help him to sustain his vision of wholeness and healing. In your name we ask it. Amen
Doug felt good about his physical therapy today. He said that he walked with the parallel bars and did some exercies. He said that on Friday his physical therapist wants to try getting Doug on our exercise bike. Untill now, Doug has not had the balance or control to lower his body onto the bike, balance on the bike and swing his leg over the middle of the bike to the other side. She thinks he is ready for this now and so we will see. It is a blessing to have continued progress.
And so we pray:
Merciful God, we thank you for your presence with us. Thank you for the assurance that all will be well and all is well. We are thankful for days that go well, with the promise of better days to come. Be with Doug as he becomes more independent. Encourage him when he becomes impatient or discouraged. Sustain his hope. Help him to sustain his vision of wholeness and healing. In your name we ask it. Amen
Tuesday, May 9, 2017
May 9, 2017: Day +169
Doug and I are so appreciative of everyone who has prayed for us these past months. Thank you to all who hold Doug in prayers for healing and prayers for me as a caregiver. We have been sustained and supported by these prayers. Doug's continued healing is evidence of all the prayers that have been offered.
Doug was diagnosed with a blood clot 2 days before we left the Elks. Since that time he has been taking medication for it. Yesterday, when he took his first shower at home, we noticed his foot was really purple. It concerned both of us. When his Home Health nurse came for his weekly visit Doug asked him to look at it today. He was concerned and called the doctor. For now, the doctor says to watch it and does not think anything more needs to be done right now. Hopefully this will resolve and dissolve before long. We will continue to monitor it.
Let us pray:
God of Mercy and Sustenance, we give thanks for all the friends that hold us in prayer. We are thankful for the support offered to us that bolsters us and supports us. God we ask you to watch over Doug as he continues to heal from this blood clot. We pray that it dissolves and is no longer a threat. In your name we ask it. Amen
Doug was diagnosed with a blood clot 2 days before we left the Elks. Since that time he has been taking medication for it. Yesterday, when he took his first shower at home, we noticed his foot was really purple. It concerned both of us. When his Home Health nurse came for his weekly visit Doug asked him to look at it today. He was concerned and called the doctor. For now, the doctor says to watch it and does not think anything more needs to be done right now. Hopefully this will resolve and dissolve before long. We will continue to monitor it.
Let us pray:
God of Mercy and Sustenance, we give thanks for all the friends that hold us in prayer. We are thankful for the support offered to us that bolsters us and supports us. God we ask you to watch over Doug as he continues to heal from this blood clot. We pray that it dissolves and is no longer a threat. In your name we ask it. Amen
Monday, May 8, 2017
May 8, 2017: Day +168
Doug brought me to tears today. I watched him walk on the parallel bars with his physical therapist Kerry. He walked! This is what we have prayed for all these months. I watched him walk 8 feet forwards, then he walked backwards and forwards again and then he turned around and walked backed to his chair. His balance was good. He was not leaning to either side. His therapist was there if he needed her, but he did no need her. Tears welled in my eyes, I hugged him and wanted to start sobbing. I could feel all the tension that has been in my body that I did not know was there. He is making it! Next week, Kerry is going to have Doug try walking with a walker.
Then she said, to my hearts delight, you really don't need this big electric wheelchair. It would be good for you just to have a transport chair that you can wheel with your hands and push with your feet. A transport chair will help you strengthen your arms and legs. Her intention is to get him walking not remaining in a wheelchair. I told her thank you so much. The rehabilitation hospital had wanted me to purchase a big wheelchair. I had refused and gotten one at the Knights of Columbus instead. I knew that the wheelchair was not going to be needed long term. She agrees and shares our vision.
One more piece of good news. When Doug got out of the hospital I asked his pharmacist about taking him off the nerve pain medication, Gaberpenten. He said that first we should reduce it to half for a couple of weeks and then nothing. When we went to see his primary care doctor she agreed. Doug is no longer on any pain medication! I had asked for weeks while he was in the hospital if they would please consider taking him off the medication because he had not complained of pain since the beginning of February. Well, it took a while to get it done, but now, no more medication and no more pain. Hallelujah!
And so we we pray:
God of Mercy and Blessing, our hearts are full of joy and thanksgiving. We are so thankful for answered prayers. Doug's walking and continued healing feels miraculous. Our hearts are so filled with gratefulness. We are so thankful that Doug no longer has pain. We are thankful for all these steps of progress that are leading to wellness and wholeness. Be near us when we sleep and when we wake. Help to continue to see the signs of your goodness all around us. In your name we ask it. Amen
Then she said, to my hearts delight, you really don't need this big electric wheelchair. It would be good for you just to have a transport chair that you can wheel with your hands and push with your feet. A transport chair will help you strengthen your arms and legs. Her intention is to get him walking not remaining in a wheelchair. I told her thank you so much. The rehabilitation hospital had wanted me to purchase a big wheelchair. I had refused and gotten one at the Knights of Columbus instead. I knew that the wheelchair was not going to be needed long term. She agrees and shares our vision.
One more piece of good news. When Doug got out of the hospital I asked his pharmacist about taking him off the nerve pain medication, Gaberpenten. He said that first we should reduce it to half for a couple of weeks and then nothing. When we went to see his primary care doctor she agreed. Doug is no longer on any pain medication! I had asked for weeks while he was in the hospital if they would please consider taking him off the medication because he had not complained of pain since the beginning of February. Well, it took a while to get it done, but now, no more medication and no more pain. Hallelujah!
And so we we pray:
God of Mercy and Blessing, our hearts are full of joy and thanksgiving. We are so thankful for answered prayers. Doug's walking and continued healing feels miraculous. Our hearts are so filled with gratefulness. We are so thankful that Doug no longer has pain. We are thankful for all these steps of progress that are leading to wellness and wholeness. Be near us when we sleep and when we wake. Help to continue to see the signs of your goodness all around us. In your name we ask it. Amen
Sunday, May 7, 2017
May 7, 2017: Day +167
We had a lazy Sunday today. We awoke to late to get ready for church and drive into Boise. And so we started the day very leisurely and made Sunday breakfast. I spent most of the day puttering around the house sorting and cleaning things up. I finally reorganized my pantry. After having family here at Christmas everything on shelves had found new homes and needed some straightening.
It was so nice to have some time to just putter around the house. These last months I have had so little time to do that. After I got clothes out for Doug, he was able to dress himself and move from the bed to the wheelchair on his own, while I was making breakfast. I did not even think about it while I was cooking. Usually I am listening carefully and checking in on him. Today seemed very natural. He did not not need me close at hand, he could do it on his own.
Doug got his IPAD out that I got for him while he was at the Elks. He is trying to learn to use it. He wanted to look at email and the app for Audible books. This is the first time he has shown any interest in checking his email. It makes my heart glad to see him do this.
And today I found myself looking forward. I asked him if he remembered me telling him that when we get through this we would plan a trip to China to see the Great Wall. This is something he has always wanted to do. He said he remembered. I said I had better get planning then, because next year I think we will be able to make that trip. I think he will be walking by then.
It is nice to look forward to the future... it is a gift really. For so long, I lived only in the present moment. I am glad there are tomorrows to dream of.
God of New Life, we thank you for transformation. We thank you for the gift of hope and a spirit to persevere. We thank you for eyes to see what is possible and the desire to pursue our dreams. We thank you for this day and this night. We thank you for this present moment. This moment is enough, but the dream of sweet days in the future is so delightful. Be with us now as we sleep and may we awake in the morning filled with anticipation for the days to come. Amen
It was so nice to have some time to just putter around the house. These last months I have had so little time to do that. After I got clothes out for Doug, he was able to dress himself and move from the bed to the wheelchair on his own, while I was making breakfast. I did not even think about it while I was cooking. Usually I am listening carefully and checking in on him. Today seemed very natural. He did not not need me close at hand, he could do it on his own.
Doug got his IPAD out that I got for him while he was at the Elks. He is trying to learn to use it. He wanted to look at email and the app for Audible books. This is the first time he has shown any interest in checking his email. It makes my heart glad to see him do this.
And today I found myself looking forward. I asked him if he remembered me telling him that when we get through this we would plan a trip to China to see the Great Wall. This is something he has always wanted to do. He said he remembered. I said I had better get planning then, because next year I think we will be able to make that trip. I think he will be walking by then.
It is nice to look forward to the future... it is a gift really. For so long, I lived only in the present moment. I am glad there are tomorrows to dream of.
God of New Life, we thank you for transformation. We thank you for the gift of hope and a spirit to persevere. We thank you for eyes to see what is possible and the desire to pursue our dreams. We thank you for this day and this night. We thank you for this present moment. This moment is enough, but the dream of sweet days in the future is so delightful. Be with us now as we sleep and may we awake in the morning filled with anticipation for the days to come. Amen
Saturday, May 6, 2017
May 6, 2017: Day 166
This afternoon I went to the Old Penitentiary with my daughter, grandson and two foster grandsons. It was a fun afternoon with the kids. Cole is a 3rd grader and will study Idaho History next year in 4th grade. Our goal is to take him to many historical places in Idaho this year. It was wonderful to be able to get away this afternoon to have fun learning and playing with the kids.
We stopped on the way home to get something to eat at Whole Foods and ran into our friends Wendy and Lance. We have not seen them in a really long time. It was fun to catch-up with some old friends. They have been traveling after they retired, for the last 3 years in their RV. They have only come back to Idaho to sell their home. Hopefully we will get to see them again before they leave town.
Doug did well being home on his own. He was able to get his own snacks, listen to a book on Audible, and watch T.V. Tonight getting ready for bed was much faster. He is helping so much more and becoming more independent. I even had time to take a long bath after he was in bed. It was wonderful!
Let us pray:
God of Promise and Playfulness, we give thanks for the continual progress that Doug makes. Each day, at your pace, his legs get stronger, his balance gets better and he is empowered to do more. Our hopes are fulfilled and we are grateful. The love and playfulness of the children remind us of the opportunities that are all around us to feel joy. These wee boys have experienced so much, their lives are so uncertain, but they can enjoy the day and be grateful for the offerings of this day. They remind us of the importance of play and the renewal that comes from it. We thank you for their witness in our lives and we ask you to bless them, hold them close and protect them. In your name we ask it. Amen
Friday, May 5, 2017
May 5, 2017: Day +165
It's Cinco de Mayo. What a great day to remember our pilgrimage to Puebla, Mexico for Doug's HSCT. While we were there we got to see the memorial of the Battle of Puebla, that we commemorate as Cinco de Mayo. Here is a little bit of information about it.
From the History webpage: http://www.history.com/this-day-in-history/cinco-de-mayo
"During the French-Mexican War (1861-1867), an outnumbered Mexican army defeats a powerful invading French force at the small town of Puebla de Los Angeles. The retreat of the French troops at the Battle of Puebla represented a great moral victory for the people of Mexico, symbolizing the country’s ability to defend its sovereignty against a powerful foreign nation."
The Cinco de Mayo memorial is located on top of a hill that overlooks the city. The hill helped the Mexicans to defend their city. Standing at the memorial there is a 360 degree view of the city. Out in the distance is a view of the volcano, Popo.
We have so many happy memories from Puebla de Los Angeles. There are statues of angels in many places in the city. We had a beautiful statue of an angel outside of our apartment door. That angel was a symbol of protection and hope to us.
Today we celebrate our southern neighbors. We remember the beautiful people who were angels to us while we were in Puebla. And we toast Clinical Ruiz, offering healing to Doug and all of our November 7 friends who went through HSCT with us last fall.
And so we pray:
As we continue on this journey, help us to remember all who have come before us, who have struggled and who have persevered. May we always feel the presence of angels as we continue on this life journey. May we all have the courage to battle for what is right and true. And may we always take the time to stop and celebrate the accomplishments of our lives. In your name we ask it. Amen
Thursday, May 4, 2017
May 4, 2017: Day 164
When I began this blog, this pilgrimage of healing and wholeness it seemed like it would have a distinct beginning and end. It was targeted on going to Mexico for HSCT for Doug to stop the progress of MS. We had no idea things would turn out the way they have. A friend wrote the other day and she said that she had not ever thought about our lives as a pilgrimage. In truth I don't think I had, until after Doug got sick. Many, many years ago I longed to one day go on pilgrimage. The first pilgrimage I took was the Camino de Santiago. After returning, it did not tamper my desire for pilgrimage, if anything, it strengthened it. To be on pilgrimage is to look for the Holy, or to encounter the Holy. It is a journey of transformation. When we think of it in these terms, indeed, we don't have to go anywhere. Many of us live life, in search of the Holy, longing for transformation. I have learned you don't have to go anywhere to be on pilgrimage. Depending on how we choose to live our lives we may be on pilgrimage.
And so it is, our pilgrimage continues. Each morning we get up, not sure of the direction life will go. We continuously pray that our steps will be guided and that we will not walk alone. Each day we move forward, searching for the power greater than ourselves and putting our trust in the goodness of this force that moves and lives within and around us.
This journey is unpredictable. Some days are very tiring. Some days lift us and carry us. It feels as if we have peaked, and crossed the great mountain But like all great mountains there are smaller ones surrounding it. But we continue. Our friend Will said again today, Doug has come so far. Indeed he has. He is participating more and more in life each day. But our journey continues.
Health care has been such a part of this journey. We have been so immersed in the health care system. Our health care system saved Doug's life, but there have been so many ups and downs along the way. The nation is at a crossroad in providing quality care for all people. I pray that God's will be done as we seek to serve Christ in all persons on our journey, on our common pilgrimage.
God who Leads us, shine your light on our common path. Help us to seek to serve you in all persons. Help us to love one another no matter our differences. Encourage us when we become tired on this long journey. Bolster our resolve to seek you. Help us to keep on taking the next right step. Amen
And so it is, our pilgrimage continues. Each morning we get up, not sure of the direction life will go. We continuously pray that our steps will be guided and that we will not walk alone. Each day we move forward, searching for the power greater than ourselves and putting our trust in the goodness of this force that moves and lives within and around us.
This journey is unpredictable. Some days are very tiring. Some days lift us and carry us. It feels as if we have peaked, and crossed the great mountain But like all great mountains there are smaller ones surrounding it. But we continue. Our friend Will said again today, Doug has come so far. Indeed he has. He is participating more and more in life each day. But our journey continues.
Health care has been such a part of this journey. We have been so immersed in the health care system. Our health care system saved Doug's life, but there have been so many ups and downs along the way. The nation is at a crossroad in providing quality care for all people. I pray that God's will be done as we seek to serve Christ in all persons on our journey, on our common pilgrimage.
God who Leads us, shine your light on our common path. Help us to seek to serve you in all persons. Help us to love one another no matter our differences. Encourage us when we become tired on this long journey. Bolster our resolve to seek you. Help us to keep on taking the next right step. Amen
Wednesday, May 3, 2017
May 3, 2017: Day +163
Today driving home from work, I learned that the vote to appeal the Affordable Care Act will be held tomorrow. I am very concerned about this. Having a husband and a son-in-law with preexisting conditions I know how difficult it was to get health insurance before the Affordable Care Act. I also know how much money it has saved my daughter and her family to buy health care insurance off the exchange. They are self-employed and had a very difficult time finding affordable health care for their family, that was worth the cost, before the Affordable Care Act. I just spent the last 4 months with Doug every day in the hospital and now have been trying to live through getting adequate health care after coming home. Over the past 10 years I have learned so much about our health care system, and I believe as a nation we can do better and I believe that our system and insurance could be made better but I do not believe that the current bill is the answer. We surely don't need to throw the baby out with the bath water.
I wrote our US representatives and senators before writing the blog tonight, asking them to vote no to this bill. Health Care should not be partisan politics. We need representation working for all of this countries citizens. Our country, our great country, should be able to provide health care for all its citizens. People should not have to choose between food and medicine, or housing and health care. This month we will spend more than $2400 on Health Care. The amount of money we have spent over the past 10 years since Doug was diagnosed with MS is unbelievable. What is happening to others who can't pay that much? What happens to their families? When people are at their sickest they need the most help. I heard today that extra money will be set aside for people with pre-existing conditions to help them pay for their premiums with the new bill. People with pre-existing conditions will not only pay more for their insurance premiums, but I can tell you that they will also be paying more for all of their needs, like we are now. The premium is only one part of the expenses, but oh boy do those expenses add up fast.
Tonight I pray that the hearts of our countries leaders will be opened. I pray that we find answers to health care that will benefit all of our countries citizens.
God of healing, we thank you for all who work on behalf of others. We pray for wisdom for our countries leaders. May they see their responsibilities to attend to the needs of all the citizens of this great country. Help all of us to remember that we walk this journey together and that we are responsible for and to one another. Help us to find answers to our greatest challenges together. Help us to lay aside our egos and our own self interests. Help us to be Christ to one another. Amen
I wrote our US representatives and senators before writing the blog tonight, asking them to vote no to this bill. Health Care should not be partisan politics. We need representation working for all of this countries citizens. Our country, our great country, should be able to provide health care for all its citizens. People should not have to choose between food and medicine, or housing and health care. This month we will spend more than $2400 on Health Care. The amount of money we have spent over the past 10 years since Doug was diagnosed with MS is unbelievable. What is happening to others who can't pay that much? What happens to their families? When people are at their sickest they need the most help. I heard today that extra money will be set aside for people with pre-existing conditions to help them pay for their premiums with the new bill. People with pre-existing conditions will not only pay more for their insurance premiums, but I can tell you that they will also be paying more for all of their needs, like we are now. The premium is only one part of the expenses, but oh boy do those expenses add up fast.
Tonight I pray that the hearts of our countries leaders will be opened. I pray that we find answers to health care that will benefit all of our countries citizens.
God of healing, we thank you for all who work on behalf of others. We pray for wisdom for our countries leaders. May they see their responsibilities to attend to the needs of all the citizens of this great country. Help all of us to remember that we walk this journey together and that we are responsible for and to one another. Help us to find answers to our greatest challenges together. Help us to lay aside our egos and our own self interests. Help us to be Christ to one another. Amen
Tuesday, May 2, 2017
May 2, 2017: Day +162
Yesterday I learned that our OT will be only coming one day a week and her aide will come one day. She stopped coming 3 times a week after the 2nd week. I did not know this until yesterday. I still had her on the schedule. Then she told me that she can only come to teach a new skill. It is expected that the patient should practice the skills when he/she is not here. That is the rule of Medicare. Unfortunately, Doug can not practice skills without the help of someone else. That is why I am paying for help, while I am gone. Doug does not have the initiative or the memory to do all the exercises on his own.
This morning the bath aide did not show up. She was due at our house at 7:30. I started texting the company at 7:45. The nurse in charge of Doug's case could not get hold of her. I hurried to help Doug get dressed and ready for the day. I already had his breakfast prepared thankfully. This afternoon I talked to the nurse and I learned that the bath aide is not longer with the company. Also I learned that the bath aide who is suppose to come on Friday will not be able to come on Friday mornings at 7:30 after this Friday. So, for now we have no bath aide. The OT had planned on coming on Friday to train the bath aide in giving Doug a shower. I asked the nurse to contact the OT and let her know there is not reason to spend time training the aide who will be here only one day. So for now, and probably we will not have one in the future, a bath aide. The nurse said they might be able to get a bath aide who could come later in the day. I said that would not be necessary. Doug has limited energy. I don't really see a reason for him to use energy getting dressed, then getting undressed, then showering and having to redress himself. I would rather he use his energy for working on the motor skills that will lead to him walking. Initially I needed help getting Doug up and ready before I go to work when he first came home last month. However, since now he is mostly dressing himself, it won't take me that much more time to help him and get out of the house in the morning. I have decided that I will help him with showers on Monday morning when I don't work and perhaps on Thursday evenings before he goes to bed. We will see. The good news with not having someone coming in the morning, I won't have to be preparing everything needed to bath Doug and wait and wonder who will show up.
This all leads again to wondering about our health care system. How does a person, in Doug's condition, not qualify for more help with his rehabilitation? If Doug does not qualify who does? Thank heavens, I am capable of taking care of him. What happens to people who don't have someone who can take care of them? Or what happens if I burn out? How long can I do everything? We are a rich nation, with health care that has so many problems. These last few months have really opened my eyes.
The PT texted me and told me she wants to train me on using a pivot transfer disk and transferring Doug in and out of the car. She was hoping I could take some time off to be home for his therapy. I told her that I have been transferring Doug in and out of the car since we left the Elks and I had watched her do the pivot transfer, had Googled it and had the OT watch me on Monday. But fine, if she wants to show me and watch me.....find a time, when I am home.
Today was frustrating. But to end on a positive note, Doug did much of his routine tonight getting ready for bed, that included brushing his teeth, taking his pills and putting lotion on his feet. Transfers were a little easier. He said his legs felt stronger tonight.
I went to see Lego Batman with my daughter, grandson, foster grandson and sister Kate. Doug stayed home on his own and watched his TV favorites. I enjoyed some kid time, my greatest joy. We learned Angie and Tom have their previous foster son back, which is a sad story. The good news is that he feels a part of Angie and Tom's family. I am proud of Angie and Tom for opening their home to kids in need. This will make them a family of 6. My oldest granddaughter who is 15 they foster adopted. I am grateful to have kids who care about others.
And so we pray:
God of Love and Hope, we give you thanks for the goodness of others, for those who give of themselves to bring life and hope. We give thanks for healing in all of its manifestations. Give us patience when we are challenged. Give us strength and courage to stand for what is right. Help us to bring about your kingdom, where all are cared for and loved. In your name we ask it. Amen
This morning the bath aide did not show up. She was due at our house at 7:30. I started texting the company at 7:45. The nurse in charge of Doug's case could not get hold of her. I hurried to help Doug get dressed and ready for the day. I already had his breakfast prepared thankfully. This afternoon I talked to the nurse and I learned that the bath aide is not longer with the company. Also I learned that the bath aide who is suppose to come on Friday will not be able to come on Friday mornings at 7:30 after this Friday. So, for now we have no bath aide. The OT had planned on coming on Friday to train the bath aide in giving Doug a shower. I asked the nurse to contact the OT and let her know there is not reason to spend time training the aide who will be here only one day. So for now, and probably we will not have one in the future, a bath aide. The nurse said they might be able to get a bath aide who could come later in the day. I said that would not be necessary. Doug has limited energy. I don't really see a reason for him to use energy getting dressed, then getting undressed, then showering and having to redress himself. I would rather he use his energy for working on the motor skills that will lead to him walking. Initially I needed help getting Doug up and ready before I go to work when he first came home last month. However, since now he is mostly dressing himself, it won't take me that much more time to help him and get out of the house in the morning. I have decided that I will help him with showers on Monday morning when I don't work and perhaps on Thursday evenings before he goes to bed. We will see. The good news with not having someone coming in the morning, I won't have to be preparing everything needed to bath Doug and wait and wonder who will show up.
This all leads again to wondering about our health care system. How does a person, in Doug's condition, not qualify for more help with his rehabilitation? If Doug does not qualify who does? Thank heavens, I am capable of taking care of him. What happens to people who don't have someone who can take care of them? Or what happens if I burn out? How long can I do everything? We are a rich nation, with health care that has so many problems. These last few months have really opened my eyes.
The PT texted me and told me she wants to train me on using a pivot transfer disk and transferring Doug in and out of the car. She was hoping I could take some time off to be home for his therapy. I told her that I have been transferring Doug in and out of the car since we left the Elks and I had watched her do the pivot transfer, had Googled it and had the OT watch me on Monday. But fine, if she wants to show me and watch me.....find a time, when I am home.
Today was frustrating. But to end on a positive note, Doug did much of his routine tonight getting ready for bed, that included brushing his teeth, taking his pills and putting lotion on his feet. Transfers were a little easier. He said his legs felt stronger tonight.
I went to see Lego Batman with my daughter, grandson, foster grandson and sister Kate. Doug stayed home on his own and watched his TV favorites. I enjoyed some kid time, my greatest joy. We learned Angie and Tom have their previous foster son back, which is a sad story. The good news is that he feels a part of Angie and Tom's family. I am proud of Angie and Tom for opening their home to kids in need. This will make them a family of 6. My oldest granddaughter who is 15 they foster adopted. I am grateful to have kids who care about others.
And so we pray:
God of Love and Hope, we give you thanks for the goodness of others, for those who give of themselves to bring life and hope. We give thanks for healing in all of its manifestations. Give us patience when we are challenged. Give us strength and courage to stand for what is right. Help us to bring about your kingdom, where all are cared for and loved. In your name we ask it. Amen
Monday, May 1, 2017
May 1, 2017: Day +161
Doug's OT came to our house early this morning to watch Doug dress and get out of bed. She was very pleasantly surprised seeing what Doug can do. He was able to dress himself and move his legs to the floor and sit on the edge of the bed. Then she wanted to see Doug transfer. Since she wanted to see if we can begin helping Doug to shower she wanted to see him transfer to a transfer wheelchair, which is fairly narrow and will easily fit in the bathroom. This gave Doug and I the opportunity to show her how we had transferred with the disk that helps him to pivot. She said we did well and I feel good about having someone else watch us and provide feedback. She also said she would come back on Friday morning and train the bath aid to use the shower chair. This is a great stride forward. Doug can now begin showering at home. He will feel so much better I think.
Will is going to help us out and install the new shower head for us. I surely appreciate that. I am sure that he will do a better job than me and probably with a lot less frustration. The shower head can be used as a handheld shower which will allow Doug to be independent with his showering.
Doug was up walking again today With will and his PT. He felt good about his therapies and encouraged by his progress.
Last Friday, I found a bag on our doorstep after Loretta and Mark had finished mowing our lawn and had headed home. In the bag were 4 small containers of solar operated flowers. I called Loretta and asked her if she had meant to leave the bag. She said yes. She had bought the flowers for herself, but thought of Doug and I and thought we needed the flowers more. The flowers are now sitting on our kitchen window sill. They brighten our kitchen and our hearts with Loretta's throughtfulness. Thank you Loretta.
And so we pray...
God of Wonder, we give thanks for progress towards goals and for the help of others. We are delighted with the simple pleasures to look forward to each day that includes showers and walking. We give thanks for the beauty of spring with blue skies, spring flowers and green lawns. The ever changing landscape intriques and delights us. Be with us this night as we sleep. May we awake renewed, ready to face the challenges of the new day. Amen
Will is going to help us out and install the new shower head for us. I surely appreciate that. I am sure that he will do a better job than me and probably with a lot less frustration. The shower head can be used as a handheld shower which will allow Doug to be independent with his showering.
Doug was up walking again today With will and his PT. He felt good about his therapies and encouraged by his progress.
Last Friday, I found a bag on our doorstep after Loretta and Mark had finished mowing our lawn and had headed home. In the bag were 4 small containers of solar operated flowers. I called Loretta and asked her if she had meant to leave the bag. She said yes. She had bought the flowers for herself, but thought of Doug and I and thought we needed the flowers more. The flowers are now sitting on our kitchen window sill. They brighten our kitchen and our hearts with Loretta's throughtfulness. Thank you Loretta.
And so we pray...
God of Wonder, we give thanks for progress towards goals and for the help of others. We are delighted with the simple pleasures to look forward to each day that includes showers and walking. We give thanks for the beauty of spring with blue skies, spring flowers and green lawns. The ever changing landscape intriques and delights us. Be with us this night as we sleep. May we awake renewed, ready to face the challenges of the new day. Amen
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