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Thread: Jim's Update

  1. #151
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Thank you funnylegs4 and Mary Grace for your love and prayers.

    I'm not familiar with the veggie bullet, but I visited the website. It looks like a cool gadget. I hope you enjoy many delicious meals with your bullet, funnylegs4!

    We have a VitaMix and a variety of other chopping and infusion gadgets, as well as a steamer. We even have a machine that turns frozen bananas into "ice cream." We have very little space for any of them!

    Jim is recovering well, holding good SATS and other vitals. He is gradually getting his energy level back up. He's anxious to be more active, but if he overdoes even slightly, he gets quite winded and has to rest. Thanks to steroids, his appetite has been constant, so he's gaining weight. Now that he's finished steroids, perhaps his appetite will slow down a little, and we can maintain a good weight for him.

    Tomorrow, Jim sees Dr. P for a follow up to his hospitalization. He'll likely have a blood draw, but he isn't scheduled for a chemo infusion. I'm sure that she wants to be confident that Jim's immune system is strong enough to withstand chemo.

    Jonathan is still leaking over his catheter, and last Friday at 4 a.m., I had to wake Jim to assist me in reinserting his catheter. I've done it on my own many times now, but I was really tired and could barely stand on my feet. Later that day, we discovered that Jon had flooded his bed, so we had to turn him, bathe him, clean the mattress, and put on a new sheet and pads. John had left town for the weekend, and we were on our own. Jim did well in turning Jon, with no adverse effects thankfully.

    John returned today and stopped by this evening to turn Jon. Big surprise ~ I cut Jon's hair today, with Jim's assistance. It's a big job, so I tend to put it off, and then Jon's hair is really long and thick making it twice as difficult. You'd think I'd learn by now, eh?!

    Upcoming events for Jon: catheter and trache change, toenail treatment, a visit from a program case manager, a wound care nurse visit, a PT visit. All of that combined with Jim's appointments leaves zero time for me to get my eyes examined/new glasses (my glasses are 11 years old) or get my teeth cleaned/checked. Every year I declare, "This will be my year to get new glasses and dental care!" Ummm ... yeah.

    Hey, let's go here



    and have some of these



    Summer is waning ~ Let's Go to the Beach!

    Thank you all for your love, prayers and support!

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  3. #152
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Thank you funnylegs4 and Mary Grace for your love and prayers.

    I'm not familiar with the veggie bullet, but I visited the website. It looks like a cool gadget. I hope you enjoy many delicious meals with your bullet, funnylegs4!

    We have a VitaMix and a variety of other chopping and infusion gadgets, as well as a steamer. We even have a machine that turns frozen bananas into "ice cream." We have very little space for any of them!

    Jim is recovering well, holding good SATS and other vitals. He is gradually getting his energy level back up. He's anxious to be more active, but if he overdoes even slightly, he gets quite winded and has to rest. Thanks to steroids, his appetite has been constant, so he's gaining weight. Now that he's finished steroids, perhaps his appetite will slow down a little, and we can maintain a good weight for him.

    Tomorrow, Jim sees Dr. P for a follow up to his hospitalization. He'll likely have a blood draw, but he isn't scheduled for a chemo infusion. I'm sure that she wants to be confident that Jim's immune system is strong enough to withstand chemo.

    Jonathan is still leaking over his catheter, and last Friday at 4 a.m., I had to wake Jim to assist me in reinserting his catheter. I've done it on my own many times now, but I was really tired and could barely stand on my feet. Later that day, we discovered that Jon had flooded his bed, so we had to turn him, bathe him, clean the mattress, and put on a new sheet and pads. John had left town for the weekend, and we were on our own. Jim did well in turning Jon, with no adverse effects thankfully.

    John returned today and stopped by this evening to turn Jon. Big surprise ~ I cut Jon's hair today, with Jim's assistance. It's a big job, so I tend to put it off, and then Jon's hair is really long and thick making it twice as difficult. You'd think I'd learn by now, eh?!

    Upcoming events for Jon: catheter and trache change, toenail treatment, a visit from a program case manager, a wound care nurse visit, a PT visit. All of that combined with Jim's appointments leaves zero time for me to get my eyes examined/new glasses (my glasses are 11 years old) or get my teeth cleaned/checked. Every year I declare, "This will be my year to get new glasses and dental care!" Ummm ... yeah.

    Hey, let's go here



    and have some of these



    Summer is waning ~ Let's Go to the Beach!

    Thank you all for your love, prayers and support!

    Love & Light,



    Rose
    Small world! I also have the gadget for frozen bananas and used it yesterday to make blueberry and banana "ice cream" . Yum! So glad Jim is feeling better. Tell him to be patient when he has to rest. Hope the doc appointment goes well. Sorry Jon is still leaking but glad Jim is well enough to help. Prayers as always!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  5. #153
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    Rose, I hope the appointment went well! I really admire how healthy you guys eat! We have a Magic Bullet and it does soooo much for a small machine. I've made "banana ice cream" in it with just a frozen banana and vanilla. One of the kids I babysit asks to make it almost every day. We have a little gadget called the veggetti spiralizer to make veggie spaghetti. It fits in a drawer. I need small things that do a lot my kitchen is small and i don't have much storage space either.
    Praying for some good news from the appointment.
    Mary Grace

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  7. #154
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    ((((((Hugs to All)))))) ~

    Jim thinks I'm overprotective, when I suggest that he rest or not take on anything too strenuous. He's ambitious and wants to do things he did before cancer arrived.

    He often says that he'll do the grocery shopping. I have to remind him that I'm on my feet pushing a cart, reaching up for something on the top shelf, or stooping for something on the bottom shelf, for at least an hour in every grocery store we use (we go to 4 different ones to get all of the foods we like). Unloading the cart (we buy a substantial amount, so I don't have to go more than once a week), then loading the bags into the van and unloading at home. Then putting the groceries away. It adds up quickly to 2 hours, and by the time I'm finished, I am exhausted. And I walk about 2 miles every morning around our neighborhood. So I know he couldn't manage it. He just remembers when he did all of the shopping and errands for many years. He misses it.

    The other concern is exposure. He just spent 6 days in the hospital with pneumonia, and was home quite ill for a week prior. His immune system is severely compromised, so he needs to avoid public contact.

    For the last 9 months, John has visited 2-3 times a week to turn Jon, and at least once a week to transport Jim to appointments. Jim feels strong enough to turn Jon now, so we're giving John a reprieve. No one deserves a rest more than John. This evening, Jim turned Jon, and we changed his sheet, pads, and wound care pads, and Jim fared pretty well. The only drawback is that Jon will miss John, his bud and his bro', but John assured me today that he will come over to visit Jon soon. I can't express how important this is to Jon, who knows that his dad is ill, and who misses his little brother, Michael, even 14 years later.

    Jim's blood work was excellent last Tuesday, so Dr. P sent him to the hospital for his Navelbine infusion. He has to drink a lot of cold water during the infusion to avoid back spasms, and he became chilled, shaking, needing 5 warmed blankets. Probably also a reaction to the chemo, but he chooses to blame the cold water.

    Otherwise, he's been fine since then. And we give abundant thanks!

    On Tuesday, Jon will see the Toenail Team (two very pretty ladies) and his nurse for a catheter change. So, it will be Ladies' Day in Jon's Room. Of course, they adore Jon, and they all fawn over him. He hates that ...

    Leaking is about the same, but his urine output would embarrass American Pharaoh! Unfortunately, not enough fluid is going to his bowels, so we have to intervene with MOM.

    Thank you, funnylegs4 and Mary Grace for your love, support, and prayers ~ and to all who are following our journey ~ thank you.

    Banana Ice Cream for Everyone!!

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  9. #155
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    You said, "no one needs a rest more than John." I object. No one needs a rest more than you!

    ANN
    There comes a time when silence is betrayal.- MLK

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  11. #156
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Jim thinks I'm overprotective, when I suggest that he rest or not take on anything too strenuous. He's ambitious and wants to do things he did before cancer arrived.

    He often says that he'll do the grocery shopping. I have to remind him that I'm on my feet pushing a cart, reaching up for something on the top shelf, or stooping for something on the bottom shelf, for at least an hour in every grocery store we use (we go to 4 different ones to get all of the foods we like). Unloading the cart (we buy a substantial amount, so I don't have to go more than once a week), then loading the bags into the van and unloading at home. Then putting the groceries away. It adds up quickly to 2 hours, and by the time I'm finished, I am exhausted. And I walk about 2 miles every morning around our neighborhood. So I know he couldn't manage it. He just remembers when he did all of the shopping and errands for many years. He misses it.

    The other concern is exposure. He just spent 6 days in the hospital with pneumonia, and was home quite ill for a week prior. His immune system is severely compromised, so he needs to avoid public contact.

    For the last 9 months, John has visited 2-3 times a week to turn Jon, and at least once a week to transport Jim to appointments. Jim feels strong enough to turn Jon now, so we're giving John a reprieve. No one deserves a rest more than John. This evening, Jim turned Jon, and we changed his sheet, pads, and wound care pads, and Jim fared pretty well. The only drawback is that Jon will miss John, his bud and his bro', but John assured me today that he will come over to visit Jon soon. I can't express how important this is to Jon, who knows that his dad is ill, and who misses his little brother, Michael, even 14 years later.

    Jim's blood work was excellent last Tuesday, so Dr. P sent him to the hospital for his Navelbine infusion. He has to drink a lot of cold water during the infusion to avoid back spasms, and he became chilled, shaking, needing 5 warmed blankets. Probably also a reaction to the chemo, but he chooses to blame the cold water.

    Otherwise, he's been fine since then. And we give abundant thanks!

    On Tuesday, Jon will see the Toenail Team (two very pretty ladies) and his nurse for a catheter change. So, it will be Ladies' Day in Jon's Room. Of course, they adore Jon, and they all fawn over him. He hates that ...

    Leaking is about the same, but his urine output would embarrass American Pharaoh! Unfortunately, not enough fluid is going to his bowels, so we have to intervene with MOM.

    Thank you, funnylegs4 and Mary Grace for your love, support, and prayers ~ and to all who are following our journey ~ thank you.

    Banana Ice Cream for Everyone!!

    Love & Light,



    Rose
    You're welcome! So glad Jim is still doing well! Jim is just as ambitious as my teacher was after his stroke LOL! It scared me so I completely know how you feel. Perhaps you can give him tasks that won't tire him out but will keep him occupied so he still can feel like he's helping. Nobody likes to be fretted over. Once his immunity is better you may want to let him do more so he can test his stamina and see what he can and can't do himself. Hope Jon enjoys ladies day!
    Last edited by funnylegs4; 08-28-2017 at 12:00 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  13. #157
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    Rose, I agree with Ann, No one needs a rest more than YOU! You are as big a part of my prayers as Jim is. I pray for your health, and happiness. You Jim and Jon are such an inspiration to me. I hope you don't mind but I share your story (nameless of course) with others. I share your approach with healthy eating but especially your Love, respect and positive attitude. Of course the many prayers also. I absolutely believe that these things combined have created a more positive outcome. It's very inspiring. You took control of a seemingly out of control situation and made miracles happen.I applaud you both. I will continue my prayers for your family. I hope Jon enjoys his ladies day!!
    Thanks for the updates! and the banana ice cream LOL
    Mary Grace

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  15. #158
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    ((((((Hugs to All)))))) ~

    Ann ~

    You're right, of course, that I need A LOT of rest! Especially today, when I'm trying to finish the never-ending cleaning of our home in preparation for tomorrow's visitors. It's 95 degrees, and I'm steam cleaning our laminate floors! I think I'm delirious from sleep deprivation!

    But I don't put myself in the same category as others, who live a closer-to-normal life than we do. And in that category, John stands out above the crowd for all that he does for others ~ his elderly mom, his daughter, wife, family and friends, and for us. His dog is recovering from surgery, and his cat is old and vomits continuously. So, his free time at home is spent cleaning up after the pets. He gets up at 5:30 every morning, and he works an extra job on Saturdays with his cousin (a family business).

    As I mentioned, he has committed at least 3 days a week to us all year, and that is time, when he could be resting or doing something fun. He interrupst his work day to transport Jim. He told us his motivation is love, which is obvious. He says, "If everyone in the world helped just one person, imagine how wonderful the world would be."

    So that is why I nominate John as the one who most deserves rest. And we're just grateful that for now, Jim is able to turn Jon to allow John that rest from helping us.

    funnylegs4 ~

    Thank you for your suggestions. Jim is becoming more aware of his limitations now, and we're having open conversations about how much is more than he can handle. He's helping me in the kitchen now, which is so appreciated. I spend far too much time on my feet every day. We just have to take it a day at a time.

    Mary Grace ~

    Thank you for your kind words. I don't mind at all that you share our story with others. This is how we all learn and grow, by sharing our stories.

    The infusion nurse, who gave Jim Opdivo, which caused the horrid RA flare, absolutely worships Jim. She has told every patient, nurse, doctor, staff person, anyone within earshot, our story. When he comes in for his infusion, she greets him and then tells the patients and nurses, "This is Jim, who I was telling you about!" Jim is so embarrassed. And then, even if she isn't his nurse, she dotes on him.

    So, we are used to it! And if we can inspire and encourage others, then what a wonderful blessing! I believe with all of my being that we were placed here and given our challenges to teach others, to help others, to love others.

    I vividly recall a moment, when I walked into Michael's hospital room after my lunch break to find a nurse at his bedside, holding his hand and crying. Of course, I panicked, "What's wrong? Has something happened to my son? Why are you crying?"

    She hugged me and apologized, "Nothing is wrong with Michael. He is just so beautiful. When I look at him, I see the face of God."

    When I sought counseling and comfort from the hospital chaplain, and I introduced myself to the chaplain as Michael's mom, she exclaimed, "You are Michael's Mother?! Oh, how blessed we are to meet you!"

    I was confused and distraught. "You know Michael?"

    "Yes," she took my hands, "we all know Michael. He is being called 'The Angel on the 5th Floor' by everyone, who is caring for him."

    And you, Mary Grace, and every other parent here at CN, know what this experience is. The purity and beauty of our children captures the soul of everyone with an open heart. You and Kathleen have inspired me. Every parent and child from CN through the years has been an inspiration to all of us. I thank you!

    I think that's our Earthly purpose. The internet has given us an incredible avenue to share our journeys, which allows us to touch more souls and open hearts.

    Thank you all for your love, prayers, and support ~

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  17. #159
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    Rose, What beautiful stories! I'm so glad that John is in your life and is such a big help. Keeping the prayers going for your family.

    Mary Grace

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  19. #160
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    Rose, I came on to check to see if Jim is getting chemo again and just where things are at this time.

    I have been praying nightly for healing for Jim, that Jon will have a good day and rest for you. Guess I was right on cue with the rest you need. I wish you had someone you trusted to come in once a week or every other week, if nothing but to clean floors, bathrooms and things like that. Even if you had part of the things to do, it would not be like doing it all - all the time.
    Virginia

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