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Thread: Jim's Journey

  1. #431
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    ((((((Hugs to All)))))) ~

    Donna ~

    Oh, I'm so glad that you aren't flying to S.C. That's a pretty long drive, about 1500 miles. Are you going to stop along the way and stay overnight somewhere? How wonderful that Daisy is accompanying you. I wonder what she'll think of the ocean and sand. She's used to the forest and snow. Hope you take some photos of her playing on the beach.

    Good news that all went well with Nick's refill. I hope the new doctor will be just as fantastic as the old one.

    Her response to your inquiry about preparing for a pandemic surprises me a bit. Medical experts in the U.S. from the CDC and NIH have stated that the C-virus will likely be widespread and will hit the U.S. Since the symptoms are similar to the flu, which killed 80,000 people last year, and the C-virus is in the initial phase of developing, I think it's reasonable to expect a similar mortality rate. Like the flu, some C-virus patients have mild cases, while others, who are most vulnerable, may end up in ICU on a ventilator.

    I remember the Swine Flu of 2009, when Jon was in ICU. We were so concerned about getting it. It was a pandemic.

    https://en.wikipedia.org/wiki/2009_flu_pandemic

    Prayers for all of us that we can avoid the C-virus and that we are told the truth about its severity.

    Sending lots of prayers for safe travels for you, Jim and Daisy. I hope you have a beautiful, peaceful vacation together.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  3. #432
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    Hi Rose,
    We are staying over at hotels for two nights on the way down. Taking our time with lots of stops for Daisy (and us). I think it will be fine - I bought a subscription to Audible books and a 12 hour book called Educated by Tara Westover. It's an incredible tale of a girl who grew up in a very isolated sect, taught herself math at home and ended up at Cambridge. It's supposed to be a fascinating and exciting read. So that's our plan and I hope it all works :) I remember swine flu - it was bad as was SARS, especially in Toronto. I'm taking precautions. I send my love and prayers that Jim will have good days coming up, and you too!. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  5. #433
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    Rose, Rejoicing along with you and Jim for his appetite, determination, strength, and for all you do to facilitate these positive things. Rejoicing with you for every step forward and every day that goes well. For every healthy filling meal , for days of good output and stable vitals. For Your continued strength to make sure Jim has everything he needs, putting his needs always in front of your own. That's LOVE! And that's what the commitment of marriage is like when it's true... Love sharing your good and bad days. Many prayers for more good days to continue for you both.
    Mary Grace

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  7. #434
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    ((((((Hugs to All)))))) ~

    Donna ~

    By now, you should be on the island. I hope your travels were smooth, and you're enjoying the lovely weather there. You and Jim have a smoothie for us and be sure Daisy gets a doggie smoothie too!

    Thank you for your love and prayers. Many sent in return with gratitude.

    Mary Grace ~

    Thank you for your love and prayers too, and you know ours are with you and your family.

    You are so right. Nothing puts love to the test like a crisis.

    It can be exasperating. Jim is now revealing that he wants more variety in his juices and pies. I only went with apple, because that was what he requested. Almost everything I order from Instacart is what he has requested.

    He wanted the Forks Over Knives "No Tuna Salad," which I haven't made in several years. The pickles, Tahini sauce were out of date. I had one can of chick peas. So, I made a special Instacart order for the ingredients to make it for him. It took about 45 minutes to make it yesterday. Instead of a sandwich, he wanted a salad, so I made a small serving, as I know he can't handle too much at a time. Tomato, cucumber (per his request), avocado, olives, and no tuna salad. He ate two bites and was finished.

    Finally, we gave him 2 T MOM last night, and at 4 a.m., he paged me with the phone. I am sleeping in the living room, so he doesn't need to page me. Off to the bathroom for his first BM in too many days. YAY! He returned to bed and slept. He felt so much better.

    He ate an egg and some potatoes, followed by some cashew "ice cream" today. Then, off to the bathroom for another BM. YAY! (We celebrate BMs in our home!)

    I was setting up to give Jim a bed bath, when he announced that second BM was en route. So, I bathed him, while he sat on the toilet, which worked out better all the way around.

    Together, we have a system, with his rollator and walking to/from the bathroom. He can walk without my guidance, although I am with him every step of the way. He is using his bed ladder to help him sit up and lift himself up into the bed.

    He's had a couple of days where he ate nearly nothing. The BMs will hopefully clear the way for him to eat more as he desires.

    I'm just grateful for the BMs and that he is finally bathed. We didn't get to shaving, as he is out of breath from exertion and needed a breathing treatment. One thing at a time.

    For today, that is us. We just do what needs to be done, pray, and love each other.

    I just realized today that Jonathan's Angelversary is the same day as Easter this year.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  9. #435
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    Rose, YEAH for the BM! We celebrate BM's as well. We had so many yers of chronic and debilitating constipation for Kathleen up until she got her cecostomy. So we still celebrate a really good cecostomy flush! I'm always so impressed with your's and Jims "diet" it takes a lot of research and work to get it to be really healthy. I just watched a Dr. on a talk show speaking (I've seen him before but never sat and watched and really listened) Dr. Hyman. He made so much sense, basically calling food our "medicine" . A lot of what I knew but really didn't "digest" (sorry for the pun). I actually took some notes and plan to watch some of his Ted Talks. I totally agree that food is a key to our good health, and you and Jim are a great testament to this i think. We consider ourselves to have a fairly healthy diet but there are some changes I will make. We don't eat any red meat,but do eat chicken and turkey. Turkey, veggie or black bean burgers. I had been slacking in my broccoli so I bought a few pounds of that today along with black beans spinach and edemame. I also plan to cut down on our sugar. Sugar is killing!! We really don't indulge in many sugary treats. I like my dark chocolate! I can totaly see how as a nation we are lacking in many vitamins. I hope to replace as many as possible naturaly. It's worth the research and the time. Hey you should write a healthy diet guide book!
    AS always keeping you and JIm in my prayers.
    Mary Grace

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  11. #436
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    MARK Hyman!!! He is great!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  13. #437
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    I agree Donna! He was so easy to listen to, and understand... Made something kind of complicated a little easier. I'm excited to watch some of his Ted Talks.
    Mary Grace

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  15. #438
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    ((((((Hugs to All)))))) ~

    Thank you Mary Grace and Donna ~

    I'll check out Dr. Mark Hyman on You Tube. He sounds like my kind of doctor!

    We don't eat as healthily as we could and should. Jim craves sugar, so he has to have a spoonful in his tea, his decaf espresso, apple pie with cashew milk ice cream, a cookie now and then. He really likes Gatorade and Body Armor and would drink them all day every day. But one bottle has 29 grams of sugar. Unless he's dehydrated, he shouldn't be drinking that much sugar.

    Today, he wanted to order delivery of Indian food from a restaurant. Every couple of months he brings this up. I am dissuading him because of the flu and C-virus. We have always had a policy of no restaurant food during flu season. We can't change it now.

    I offered to make him an Indian meal, using the jarred sauces we have and veggies. He wants Biryani, which is a rice dish. Rice can be constipating, and we already have that problem. Also, the last time I made an Indian meal, he had blood in his stool. And he has recurring indigestion/heartburn now, which a spicy meal, even mildly spicy, would aggravate.

    He says "I'm dying anyway. What difference does it make if I get the flu or the C-virus or indigestion?"

    I pointed out that if he gets the flu or the C-virus, I will get it too. Then, I won't be able to care for him. I'm run down and a Senior, so it's likely it would kill me too. He forgets that one of us has to get a will drawn up (me) and will be responsible for getting the house together and all the things done it needs to have done (again me). Even if Jim was perfectly healthy and survived me, he wouldn't know where to begin to do all of this.

    Finally, Jim asked for a cup of sweet pea soup with Carr crackers and apple pie with cashew milk ice cream. He ate it all and fell asleep.

    I understand, of course, how Jim feels. I miss the food we used to order and have delivered from a very nice Indian restaurant, which burned down. And our favorite Greek restaurant, run by a family. passed from Mama to son. It closed down. Our British Pub has a fancy menu now, not like the old pub food in the days when we took Jon and Michael there. And our favorite local restaurant, historic in our town, serves such delicious vegetarian meals. They still don't have delivery. Even their menu has changed.

    Jim feels like a hermit, he said. I understand that too. It has been that way for us for decades, because of Jon and his vulnerability and needs, and then Jim's cancer. Nancy said her husband would visit with Jim, but Jim is usually asleep during the day. He doesn't realize that his sleeping patterns preclude visitors.

    For example, I was going to ask John to visit today, so that we could reframe the mattress. When I pulled Jim up in bed a couple of weeks ago, the mattress slid again. I tried to fix it, but I'm not strong enough. I didn't text John this morning, as Jim was sleeping. When he woke up in the afternoon, there was eating and changing britches, etc. After he ate, he fell asleep.

    Jim has to get up out of the bed for the mattress to be reframed. The chairbed is too low for him to get up using his rollator. So, he would have to go to the toilet to have the mattress moved. It needs to be done as he's only getting alternating on one side of the bed now.

    Anyway ... it was a long night and day.

    I finally got the Brita pitcher set up to cleanse the water, with the hope that it will taste better to Jim. I had to clean it with soap and water, and I used too much soap, so it took forever to rinse it out. Then I filled it with tap water three times to clean the filter. I carted that heavy pitcher out to the yards and watered plants. So much water was wasted on this effort. It holds 3 16 oz bottles of Arrowhead Water, which we have delivered. In fact, we got it today.

    I told Jim, "If you don't think the water tastes better after all of this, don't tell me!"

    I drink this bottled water too, of course. It tastes fine to me. But Jim has read about and seen TV shows discussing the rip off of various bottled water. The fact is this: we live near a closed Superfund site, and we're not drinking our tap water. We've been drinking Arrowhead for decades. That isn't what caused Jon's, Michael's, Jim's or my health problems. And we have all survived longer than our life expectancy significantly. It's not the water.

    BLUEBERRY PIE RECIPE?

    I have two frozen pie crusts (Marie Callendar) and a big bag of frozen blueberries. Without adding sugar, what is your recipe? Open to all who have ideas. Thank you so much!

    We thank you all for your love, prayers, support, friendship and caring. We pray for you and your loved ones every day and send you healing energy and bouquets of LOVE.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  17. #439
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    Hi dear Rose, here is a recipe for sugar free blueberry pie! https://www.food.com/recipe/sugar-fr...rry-pie-447990. Let me know if it's OK. xoxo Love D
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com



  18. #440
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    Rose, I hope all is well with you and Jim. Always thinking about you both and keeping you in my prayers.
    Mary Grace

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