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Thread: Jim's Update

  1. #91
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    Wow! I'm impressed that Jim was able to help turn Jon! That's an AMZING improvement! Prayers Jim gets even better. You are right to warn him not to overdo. I have seen people overdo when sick and it is not pretty. Keep us posted on the infusion please??? I would get a bruise near my tailbone sometimes, sometimes just trying a new position helps a ton.

    Good news, on my end we had film rehearsals and they went rather well!
    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. #92
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    Keeping the strong prayers coming! Think about you every day...
    Mary Grace

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  5. #93
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    Prayers are still being said for all of you. In addition to you and Jim, I am concerned about Jon's wound. I keep thinking of Cat and what she went through, so I hope that the schedules can be worked out to get the wound care nurse in soon. So much on one person Rose - you are amazing.
    Virginia

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  7. #94
    Distinguished Community Member jendie's Avatar
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    Continued positive thoughts for the 3 of you, Rose. I'm happy to read about Jim's improvement.

    Jendie
    I've been a member of this forum during its different incarnations since I was dx in 9/98


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  9. #95
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Thank you for your continued prayers and positive thoughts and healing energy.

    Jim has reduced his steroid maintenance dose to 10 mg/day. He's sleeping like he's been on a bender for weeks (he has, on steroids), and he doesn't want to eat every 10 minutes. Amazing what going from 20 to 10 mg does. Still not having pain. Some residual aches from overdoing, as expected, but he's being more cautious now.

    Jon's been having a lousy couple of days with a lymphedema flare. Belly full of fluid, low SATS, high heart rate, slight temperature, low urine output. He's miserable. It doesn't help that it's been in the 90s the last 2 days. We turned on the a/c yesterday evening, and we all felt cold. And stuffed up. So today, the fans are all going.

    funnylegs4 ~

    Thank you.

    Congratulations on the successful film rehearsals! I'm looking forward to seeing the final result!

    Jon has an alternating pressure, low air loss mattress, specifically for prevention of decubitus ulcers. His wound from 2009 was 5" deep into his buttock and took a year to close up. His wound on coccyx is a deep depression, which we've been watching for many years. His right hip has a rod and pins, and his left hip is gone. So, it's a challenge to turn him, and he cannot tolerate pillows to keep him on his sides.

    It was quite taxing for Jim and me to turn Jon, and uncomfortable for Jon, because we don't have the strong arms and secure hold that John provides. But we do what we have to do.

    Mary Grace ~

    Thank you. I hope that all is well with you, Kathleen and your beautiful family.

    Virginia ~

    Thank you. We're still waiting on our GI doc for the G Tube visit, because that has to take priority right now. When he lets me know when he'll be here, I can schedule the nurses, and John, so that he can turn and hold Jon for the nurses' exam.

    jendie ~

    Thank you. My thoughts and prayers for peace and comfort are with you too, jendie.



    Love & Light,

    Rose
    Mom to Jon, 47, (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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  11. #96
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    Sure glad to hear Jim is out of pain and able to function better. Nice to hear. Is the heat causing Jon's lymphedema or making it worse? These guys have to deal with enough as it is. Sure hope this week is better for him.
    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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