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Thread: A Prayer Request For Jim

  1. #91
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    You guys are really being rung over the coals. So sorry everything isn't going more smoothly. Chaos drives me up a wall, as does incompetence. Praying for a better week ahead, peace, comfort and answers. So wish we lived closer. I would love to help you with a this. Take care and know you are thought of and prayed for.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  2. #92
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Tamie ~

    Thank you for your prayers and positive thoughts. You are so sweet to want to help us, but you have your hands quite full too. I wish I could help you too. But we do help each other, right here, with love and support. And that is a blessing.

    TODAY'S UPDATE

    Jim got his groove back today. He ate a good meal during his night shift (my sleep shift), some toast later in the morning, two tubs of yogurt with blueberries and flax seed oil, and then this afternoon, we cooked together. We made his favorite, Veggie Shepherd's Pie. He's the chef ~ sautes, adds the herbs and creates the sauce. I'm the sous chef, peeling, slicing, dicing, cleaning up. So delicious; Jim had 2 helpings!

    His Orgain shakes arrived today. 31 lb box, and Jim said he wasn't sure he could lift it. So I dragged it in off of our porch. A case of 36 shakes, which means I won't have to drag that box in again for another month! One less thing to look for in the store; one less thing to lift and carry into the house and put away.

    His beanie knit caps also arrived today. Jim's head is oval shaped, particularly noticeable now that he's lost his hair. The caps were too big on him, pointy, and I wasn't quite sure what we could do to adjust it. I could wash them, hoping they will shrink. Hand wash, lay flat to dry. Next to "dry clean only," those are words I never want to see. Like I have time to hand wash anything!

    We had some hearty laughs over the beanies. Just when Jon has adjusted to his dad's baldness, he shows up with a beanie cap. Jon was bemused. He's used to seeing dad in the surgical caps, because Jim wore them in between haircuts, when his hair got in his eyes. Irony. There's a lot of that going on with us these days.

    Jim does have a variety of surgical caps, which match the patterns on Jon's "designer" hospital gowns (yes, that's what they are called), but we call them "shirts." They actually look nice on him, and then we call him "Dr. Jim."

    https://surgicalcaps.com/collections/hospital-gowns

    Jon has all of the tropical themed, Hawaiian, surfing, blue lagoon gowns shown. And Jim has the matching caps.

    For the past 2 nights, Jim has gotten up earlier, so that I can go to bed. It's been truly a blessing to get more sleep. It has been so long since I have had restful, restorative, deep sleep, that if I dream, it's a jumbled mess, which makes no sense. But in the past 2 nights, Michael visited me in my dreams. Exquisite dreams. I held him close to me and kissed him. I could smell him and feel his presence. Michael was radiant, beautiful, his eyes reassured me, and his smile calmed me. He is at peace, and I was at peace with him.

    To have a moment of peace with my beloved son, amidst all of the chaos, uncertainty, fears, changes, and stress is the greatest blessing that I can imagine right now. I needed Michael to remind me that he is forever near, and that he and his band of Angels are watching over us.

    I'm certain that Michael has been telling me this all through these nearly 14 years since he received his wings. But, I didn't or couldn't take the time to listen now, because I was too caught up in the chaos. I needed to be separated from it physically, through sleep, to listen and receive properly.

    We don't know what tomorrow may bring. But we have today. And it was a good day for all of us.

    Blessings to all and thank you all for your positive thoughts, healing energy, 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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  4. #93
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    Rose, always reading your posts. they never fail to tire me out just reading them. I so wish I could help more but know that I'm always sending positive thoughts, prayers and hugs your way. I'm so glad to hear that Jim was feeling better that must have been a difficult week working so hard at staying healthy and having a setback that is out of your control. I pray that the next round goes much more smoothly. You and Jim amaze me and make me feel lazy in comparison. I'm especially glad you've been able to get some good sleep. Sleep with a message that is so uplifting and I'm sure invigorating! So glad you have an angel watching over you. I'm certain he is always close by and is so proud of you and all you do to keep your family healthy and happy.
    Kathleens birthday went amazingly well! We had tacos chili fajitas rice and beans and of course Margaritas! Kathleen was so surprised! We played one of her favorite songs for her when she came in the door My Girl, I think that made her as happy as the party did. She got so many wonderful gifts. Lots of fantastic books, she loves to read and will read for hours at a time.I'm still having trouble getting pictures to my computer but I will work on that and post some. I need my son to help.
    Tomorrow night Kathleen is going to WWE wrestling She LOVES WWE and watches it on TV but this is the first time she will see it live. We have several friends going with her and I'm certain she will be in Awe if it all.
    Thank you for all your updates, I read every one of them and you are always in my prayers...
    Mary Grace

  5. #94
    Distinguished Community Member agate's Avatar
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    Rose, I know what you mean about finding Amy's frozen meals that are high in protein. I check them out regularly and notice that many aren't high enough in protein for my preferences.

    What a shame that you're having to haul groceries--Is there a possibility that you could use Peapod or one of the other ways of ordering groceries online and having them delivered?

    There are also the services like Blue Apron and HelloFresh that deliver the ingredients for meals, and you make the meals. I have an impression those arrangements are pricey but work well. I haven't tried them and so can't speak from experience but I'd be lost without home delivered groceries.

    I use the Safeway sometimes but there's also an organization of volunteers who shop every week for people who qualify for their program (over a certain age and having problems getting groceries). Maybe your community has something like that?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  6. #95
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Thank you for your prayers and positive thoughts. I'm thrilled to report that Jim has gained 4 pounds!

    Kathleen, always the party girl! I'm so happy that she had a great birthday (she always does thanks to you, your family and friends). I look forward to seeing your photos. Maybe you could post on the March Update thread, or start a separate thread, so that the photos don't get lost here in this rambling thread.

    agate ~

    Thank you for your suggestions.

    We eat a lot of Amy's foods ~ tortilla chips, soups, pizzas, bowls, burritos, because they are organic and nutritious. Not necessarily high in protein, so we have to make up for that protein in other ways.

    Field Roast (grain substitute for meat) is very high in protein. It's also fabulous and fun to create meals around. Yves soy meat substitutes are high in protein. We eat Yves deli "meats," "hot dogs," breakfast sausages. Jim also loves Quorn (which is a fungi), very high in protein.

    I shop at 3-4 different groceries to get the food we eat, need and want, because they don't all carry these products. Or if they do, they only carry a few items, not the full line. Only one store carries the full line of Yves, and it's a 20 minute drive from our home (so 40 minutes to/from). That store also carries our multi and Vitamin D vitamins.

    As much as possible, we try to buy organic fruits and veggies. Two of our stores cater to organic vegetarians (although they sell meat/poultry/fish too).

    Jon's nurse has used Hello Fresh for organic veggies and fruit, but she says that the offerings are limited. I know about Blue Apron and other similar programs, but I've not read a lot of positive reviews on them. And again, the offerings/choices are limited to what they're serving during the week/month. And, I've noticed that the selections for vegetarians is rather sparse with most of them. At least they were the last time I looked, which was probably last year.

    I don't know whether we have any grocers, who deliver in our area, but, it wouldn't be useful to us, if they don't sell the products we regularly buy.

    We probably do have organizations, who provide assistance to families like ours, with a cancer patient and disabled adult child. I haven't explored this, because what we get is very specific, and I spend time mulling over options in the store ("if they don't have this, then should I get that?") and duplicating what we have to stock up, so I don't have to shop more frequently.

    I guess I don't feel comfortable asking a volunteer to do as much and as specific shopping as I do.

    Boy! That was a long-winded response and probably much more than you wanted to know!

    Our Shepherd's Pie should tide us over for a couple more days. Jim just gobbles it up, and it's working since he's gained some weight.

    Thanks to everyone for your prayers, love, support, positive, healing energy and good thoughts. We're making progress.

    Oh ~ Jim shaved the top of his head today (I will shave the back tomorrow) and surprised me. It took me a minute, and then I said, "You shaved your head. Wow! Yul Brenner! Shall we dance?"



    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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  8. #96
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    Hi Rose,

    I’m so sorry Jim had such a rough time! Jen from the “Little Couple” got dizzy like that after her chemo. I would guess it’s from the chemo itself as well as the utter exhaustion. I was really worried about Jim so I am so relieved he got his strength back! What you wrote about Michael is beautiful. I think Michael is trying to tell you that everything will be okay and Jim will get better. I know Michael is helping you. I am praying for you all!
    So sorry for my delay in responding. I had a crazy week that I will write about in the March update thread.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  9. #97
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    I met a cancer survivor today so I wanted to share this story to encourage you and Jim. I was working on my film again and this woman blurts out "I had a brain tumor". I was like "You had a what?!" So she proceeds to tell me she discovered she had a brain tumor after giving birth. Luckily the brain tumor was small enough that with surgery and chemo she was completely cured and is now cancer free 24 years later. "They can do a lot for cancer now" she said.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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