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Thread: New Free Online Future Planning Magazine for SN Families!

  1. #1
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    Default New Free Online Future Planning Magazine for SN Families!

    I'm off to a clinic appointment this morning with Nick and then to Montreal to see my Mum, but I had to tell my friends before I leave about this GREAT new free :) future planning magazine that just came out today. I blogged about it here and the link to the E-Zine is here. We're featured on pages 10-11 (click the videos, they are kind of fun.) Love to all, Donna x
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member houghchrst's Avatar
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    Donna an awesome tool for those needing it. It really covers a wide scope of things. Loved the videos.

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    ((((((Donna))))))

    Thank you for sharing this link with us. Looks like a wonderful resource. I will have to learn how to navigate it and use all of the features. I did find your articles and did see (but not hear) your video. There is a lot to explore there!

    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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    Hi guys, Rose, I took all your advice today and wiped down my Mum 's room with disinfectant wipes and it's a good thing because she's positive again with C-Dif. We are so discouraged. I'll keep you posted! Can't imagine why you don't get sound on the videos, that's strange. Sending love to your family! xoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  5. #5
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    ((((((Donna)))))

    I'm so sorry that your mum has C-Diff again! It can be a challenge to conquer, like MRSA. I'm sending lots of healing prayers.

    It's a shame that caregivers and patients have to be responsible for disinfecting their rooms. That is something that should be done by nurses and aides every time they step into the room. If that were the case, then your mum would likely not have C-Diff right now.

    About sound ~ I have sound on my computer, and I can get sound on any video etc., but I don't have headphones. The only time that I use sound on the computer is when both Jim and Jon are awake. And that is unpredictable every day. Usually, when I want to listen to something on the computer, one or both of them are asleep. Later on, when they are awake, I forget or I'm too busy to watch/listen to the video.

    But, I did listen to your video on the E-zine site. I love your positivity and hopefulness. And those are things that NEED to be contagious!

    Be mindful of your own health during these stressful times.

    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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    Hi dear Rose, I just got home from Montreal where I spent most of last week with my Mum and then up to our family cottage on the lake for yesterday and today. It was lovely but I still worried a lot about my Mum. My sister was with her yesterday and I was on the phone with Mum today three times and she was actually doing OK. She's now on BOTH flagyl and vancomycin - have you ever heard of that? They said that she will probably feel much better in a couple of days, we shall see. She is 90 and can't stand the onslaught of these symptoms and heavy duty medication for much longer, I don't think. But wow, she is strong. My cousin said that she will outlive us all and be the last one to turn out the lights in the province of Quebec! Anyway, I have to get on to Nick's neurologist tomorrow, see the respirologist Tues and then go back to Montreal that evening. Gotta visit Nick tomorrow too - I miss my treasure. He's doing really well, very interested in the Euro cup soccer and in the Stanley cup hockey playoffs. Hoping and praying that you, Jon and Jim have rest and peaceful days/nights. Much love to you and all my dear old pals here on CN2. xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  7. #7
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    ((((((Donna))))))

    I'm relieved to read that your mum is improving, and I pray that she will continue to respond to the antibiotics and be free of C-diff very soon. Is your mum being seen by an Infectious Disease doctor?

    Yes, I've heard of Flagyl and Vanco given simultaneously. Jon can't take Flagyl (Dilantin), so he depends on Vanco. He has been on as many as 6 antibiotics at one time (Michael too), while in ICU.

    As I mentioned, C-Diff is a tough bug to beat, so if one antibiotic isn't really attacking it well, another one is added. Your mum may be weaned off of Vanco, if she improves with the addition of Flagyl. After a period of time, antibiotics lose their effectiveness, and this is especially true of Super Bugs like MRSA and C-Diff.

    Very happy that Nick is doing well. Who is he rooting for in the NHL playoffs? Our neighbors are very loud Kings' fans, as you might guess. We are not hockey followers. Football, basketball, a little baseball, some soccer, and a touch of rugby are the chosen sports of the men in our family.

    Thank you for your hopes and prayers for us. Jon's urine output slowed down today, and we went into "ICU Mode," as we call it, suctioning, re-hydrating him every 15 minutes, and withholding formula, as he was gagging and gearing up to toss his cookies. Thankfully, it all worked, and his output is increasing with each hour. It is so very scary, when this happens, because he could literally drown in his secretions and excess water in his system. What comes gushing out of him is quite astonishing. Without his trache, I'm sure he wouldn't have survived this ordeal he's been going through for over 6 months. That trache has saved his life.

    Sleep and rest isn't available to any of us in a large quantity these days. But we get what we can, and we keep moving forward.

    Please deliver hugs and kisses to Nick and your mum from us. Healing prayers continue ~

    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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