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Thread: Jim's Update

  1. #141
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    I'm so sorry Rose! When I saw the word "hospital" like you I worried it was the cancer but thank god it is NOT the cancer! I also thank god Jim is safe and being taken care of at the hospital. I'm praying for you all. You will get past this. I promise you.
    Sorry I have not been around. I was on vacation...
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  3. #142
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    Smile Jim Is Home

    ((((((Hugs to All)))))) ~

    Jim came home from the hospital today. He is feeling very good, holding good SATS on room air, is well hydrated, and much stronger than when he went in. He was tested for MRSA (standard for all patients) ~ does not have it. We're surprised, since Jon and Michael had it so many times, and we've been exposed. We just expected that we were colonized.

    He had a spacious private room with bathroom/shower on the Oncology Unit, with a view of a serene garden outside of his window. He watched hummingbirds feed on Magnolia blooms. His bed had a state of the art alternating pressure mattress, and he had massaging booties on his legs to prevent blood clots.

    While it may still be called a cafeteria, it's more like a restaurant, serving fresh, delicious, nutritious meals any time of the day or night. This is all new since we were there with Jon in 2012. The only meal Jim didn't enjoy was the veggie spaghetti, because the sauce was too thin. So his first meal at home tonight is a hearty sauce veggie spaghetti dinner, with a small chef's salad, and french baguette. No, I'm not a gourmet restaurant, but after he told me that their pancakes were better than mine, I realized that I have to step up my game now! He's been spoiled!

    He has had nothing but praise for all of the physicians, nurses, therapists, aides, even the cleaning crew. We've always been impressed with the caring, compassion and dedication to healing of everyone, who works in our hospital. We often joke that it is the "UN of hospitals," because every imaginable nationality is represented among their staff. And they are all committed to the hospital's credo of care, treating patients and families with dignity and respect, and working tirelessly to bring patients to wellness and wholeness.

    Jim was allowed to walk around the Oncology garden with an aide, and this began building up his stamina. Now he wants to continue walking around our neighborhood to maintain his strength. I couldn't be more thrilled with his choice. At first, we'll have to take it slow. On his first walk in the Oncology Garden, his sock caught on something, and he tumbled. Minor abrasion on his hand, and thankfully no broken bones, because he stopped his fall. Rule #1: Wear shoes outside!!!

    It's just wonderful to have him home and feeling so much better. Jon and I missed him terribly, and Jim missed us.

    Thank you all so much for your love and prayers!

    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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  5. #143
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    Rose what a rollercoaster ride! So sorry about the hospitalization. Sounds like he got some great care though. The children's hospitals Kathleen has been in had the same process for food. She ordered what she wanted from a menu when she was hungry. Boston Children's had this even 15 years ago when she was there.
    What a scare that must have been with the fall! So glad he didn't get hurt, what a set back that may have been. He must have some strong bones. I will keep the healing prayers coming you and Jim are doing such an amazing job, healthy eating and positive attitude is such a key! Thanks for the updates I look forward to another great update soon.
    Mary Grace

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  7. #144
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    So happy to hear Jim is home! Best place for his complete recovery. Lots of love, good food and his own bed and routine.
    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."

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  9. #145
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    Rose these are some of the hardest words and I write them as a minister. please do not hate me for my counsel. Can you communicate with him? What are HIS wishes. I have written let god give him a better life where he will be free from pain and being poked and prodded Cynthia had a livng will - as do I, they wanted to put her on a ventilator - I said no - Please, some of these tests and chemo HURT the patient, I know you love him dearly, but please, if it is his time, let him go to Jesus, I a crying as I write this, and I know you want him around, but think about him, his quality of life and if you can, talk to him about what he wants. As I said at the beginning of this post, Don't hate me.

    Alex44
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    Last edited by alex44; 08-13-2017 at 11:20 PM. Reason: lost pat of post

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  11. #146
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    ((((((Hugs to All)))))) ~

    Thank you Mary Grace and Tamie for your love, prayers, and support.

    Alex ~

    I could never hate you, my friend, and I appreciate your concern.

    Jim is my husband, not my son, and he is fully functional and able to make his own decisions. He has done well with chemo, and although he is recovering from pneumonia, he is not in pain, nor anywhere near the end stage of his Earthly life. In fact, he has made remarkable progress, which has stunned all of his physicians, especially his oncologist.

    I know how difficult it is to let go and Let God, as we had to make that decision for our son, Michael. We are as prepared as possible to make that decision for Jon someday. Jim is clear about what he will/will not do in regards to his cancer. For now, he is fighting the good fight and winning.

    Many prayers of healing on the way for you, as you grieve for your precious Cynthia. Peace be with you.

    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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  13. #147
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    I am sorry, I had the two confused and I am glad you realized that, I only come from love and I will keep praying for your Family(you Included)
    Blessings and I hope Jim gets better soon.
    Blessings
    Alex44
    Last edited by alex44; 08-14-2017 at 05:47 PM. Reason: Spoke before i Read whole thread - ASpoagys. A.

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  15. #148
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    Thumbs up

    ((((((Alex)))))) ~

    Please, no need to apologize. This is a super long thread covering months of Jim's journey, and you're new to our story. I can see where it would be easy to confuse Jim and Jon, as this is the Child Neurology forum. It would be expected that I'd be talking about my son, rather than my husband.

    Child Neuro has been my home forum for 17 years, so that is why I post here about Jim and our family.

    I know you come from love, Alex, and I pray for your healing and strength.

    Thank you for sharing your love with me and for your blessings~

    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. #149
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    Hi Rose,
    SO RELIEVED JIM IS HOME! Walking is an awesome idea! In regards to veggie pasta, have you ever heard of the "veggie bullet"? I just got it as a gift. It makes pasta in a spiral shape out of vegetables. It totally reminded me of you and Jim! My prayers to you always.
    Last edited by funnylegs4; 08-14-2017 at 07:31 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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  19. #150
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    Just checking in for updates...I hope things are still going well and Jim continues to improve. Your family is always in my thoughts and prayers.

    Mary Grace

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