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Thread: What Is Next For Jonathan?

  1. #51
    Distinguished Community Member agate's Avatar
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    Rose, I'm so glad that the Baclofen worked on the hiccups and that you had a real Thanksgiving, the 4 of you.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #52
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    It only took a few doses of Baclofen to calm Jon's hiccups, and they have not returned!! YAY!!

    Today, his nurse visited to change Jon's catheter. All went very well. We are hoping that we have the remedy now to keep it in place to prevent excess leakage.

    His vitals are excellent. And he couldn't stop smiling at her. She has taken such good care of him (and us), and he loves her dearly. And vice versa, of course.

    Since her next visit isn't until after Christmas, we gave her gifts today. She has an old avocado tree in her yard, which produces the most divine avocados. She brought us 1/2 dozen. What a treat! You can't buy avocados in the store that are anywhere near as delicious as hers.

    We're on a roll ... let the positive vibes continue!!

    Thank you all for your love, prayers, and support. As always, please know that we love and pray for you all too.

    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. #53
    Distinguished Community Member agate's Avatar
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    I hope your letter will get some results, Rose--good results for you. Seems as if they could at least have given you advance notice of this change and included possible options for you. Changing the rules without notifying the people affected by the change is so unjust.

    It forces you to live in everlasting quicksand, never knowing what is going to change next or how much inconvenience that change will cause you.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  7. #54
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    ((((((Hugs to All)))))) ~

    agate ~

    I think you're referring to the supplies situation, which is now resolved. I learned that Jon's nursing agency is not a DME, so they weren't supposed to be supplying patients. The kibosh was put on them by a new director. So I didn't write a letter.

    With the new supplier, it seems I have to negotiate every month to get what Jon needs and was prescribed by his physician, and not what they want to send to Jon. He has a DeVilbiss suction machine, and only DeVilbiss canisters will fit it. I had to discuss this with a supply rep for nearly an hour last week. Jon's canisters and tubing arrived today, and they are the correct ones. So, I succeeded! I hope I don't have to reinvent the wheel every month!

    Jon's catheter is holding, with minimal leakage. He's lethargic, likely a combination of his seizure meds, hypothyroid, lymphedema, and lack of exercise.

    We'd love to get him out of bed, if he could tolerate it. We're trying more therapy and massage with him these days, so we're working toward that goal.

    On Monday, the young lady, who helped me to the van to load my groceries, commented on what a great van it is. It's a 1998 Dodge Ram with a raised roof and custom interior detailing. W/C lift in the back, two w/c tie downs for Jon and Michael. Four Captain's chairs. We used to take the boys out of their w/c's and put them in the Captain's chairs, which were specifically designed for them.

    I said to her, "We bought this for our sons, both of whom used wheelchairs. It has a TV too, so that they were always entertained. But my youngest son passed away, and my oldest son hasn't been able to go out in the van for over a decade. We're thinking we should donate it, and get a smaller, more efficient car."

    When I turned to get the next bag from her to put in the van (which is not convenient at all, as I put them in front of and behind the captain's chair (Jon's) on the side of the van), she had tears in her eyes. "I'm so sorry."

    I thanked her, and apologized if I over-shared. "You didn't. I hope I see you again before the holidays."

    When I got in the van and put the key in the ignition, I turned around to look at the back of the van. I saw my boys, in their Captain's chairs, watching the TV, laughing, with Jon pointing at every fast food sign, and announcing, "Hamburger!" All of the memories of our outings, both good and bad, flooded through my brain in an instant.

    "Okay," I sighed. "I need to get gas and get home."

    No time for nostalgia. We live in the Now.

    Thank you all for your continued prayers, love 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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  9. #55
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    Rose, Such a beautiful story. Your beautiful family touches so many people. You seem to always share just the right amount to just the right people. I absolutely believe everyone enters our life for a reason. YOu don't have to answer this but do you keep a journal?
    Mary Grace

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