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Thread: Our Black Friday

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Unhappy

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

    The supplies were not delivered today. And we've been suctioning Jon constantly without saline.

    Jon's nurse called tonight and switched her visit to tomorrow. Our house is a mess, because I haven't had time to clean in the past week with Jim and Jon and everything else.

    Jon's on 2.5 liters now, with no sign of improvement. I fear pneumonia.

    I'm running out of answers and energy.

    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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    Sorry to hear that Jon isn't doing well. Sending prayers up for him.

  3. #13
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    ((((((Marcie)))))) ~

    Thank you for your prayers ~ they're working! Happy to report that Jon is off of O2 and holding reasonable SATS on room air. Yesterday, he tanked again at 67, had to suction, which woke him up. But he didn't have to go back on O2, thankfully. His sleeping is all over the map.

    Supplies are dribbling in. At last we have saline!

    Everyone is awake now, so I'm going to vacuum. I have to grab these opportunities.

    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.

  4. #14
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    Wish we lived closer. I'de come and help you out. Happy to hear Jon is a bit better and you are finally getting some of your supplies. You have to get some rest though.

    I've had company for the past two weeks. Jen (Sebastians mom) and Helene (Carly's mom) came to visit. I love that we have stayed in touch for all these years. They are leaving this weekend and I will be sad to see them go.

    Take care of yourself Rose.
    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."

  5. #15
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    ((((((Tamie)))))) ~

    Bless you, dear ~ with all that you have going on with Tyler, wishing that you could help us. Back at you!

    Please give my love to Jen and Helene. How wonderful that they are visiting you. Perhaps you could encourage them to drop by here occasionally?

    Jon's nurse will visit tomorrow to change his catheter. We're looking forward to seeing her and hoping that she has some wisdom for us. And that is why I'm cleaning the house today. It was quite helpful that both Jim and Jon were awake this morning, so that I could get a lot accomplished.

    Enjoy your visit!

    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.

  6. #16
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    After hearing your story about the stolen supplies I'm staying home waiting for the Christmas stuff I ordered, just in case.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  7. #17
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    ((((((funnylegs4)))))) ~

    It's a good thing to keep an eye out for sure. I ordered supplies for Jon today, and our supplier (who is a wonderful, caring person) said, "It's not just you. It's happening to a lot of people. It's the world we live in today."

    Hope everything gets to you safely.

    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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  9. #18
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    It's a good thing to keep an eye out for sure. I ordered supplies for Jon today, and our supplier (who is a wonderful, caring person) said, "It's not just you. It's happening to a lot of people. It's the world we live in today."

    Hope everything gets to you safely.

    Love & Light,

    Rose
    Very true unfortunately. I got everything! :)
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. #19
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    What the hell? I can't believe that. I hope you get the issue taken care of, and got his supplies replaced. Goes to show you that there are a lot of sick people in this world, who think just because they see boxes on the porch, automatically assume that they are Christmas gifts, or something they might want for themselves. I don't know what I would do if somebody did that to my fiancé, as he and I are both blind and he uses CPAP at night.

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