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Thread: It's About Time I Caught Up With My Oldest Friends!!!

  1. #1
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    Default It's About Time I Caught Up With My Oldest Friends!!!

    Hi Everyone!
    I've been reading all your news - everyone is so busy and hopefully life will slow down a bit and the Gods of aches and pains will be kind this spring (to us, I mean) - the Gods of health for our children - we'll hope they look kindly on our families too (that's most important)!

    All is well with us. Nicholas is doing well these days - he had a bad spell leading up to Christmas and in January, but we adjusted his pain pump and added oral baclofen as a PRN and that helped a lot. He's having lots of seizures some nights, but usually only after exciting hockey games (when his team wins). But for the most part, the ativan works OK to stop them. He can have it every second night, so some nights are bad, but we have nothing to give him. We have a neurology appt April 14 (my 60th birthday!).

    Jim and I have been in Cat Island for the past month and we go home on Wednesday. We are so excited to see Nick, but he's not missing us too much. We skype twice a day (thank goodness for technology)!!!!!! He wants a bottle of rum and a rum cake from the duty free, god bless him. My disability Mama friends down here are all well and I've enjoyed visiting with them so much. My native Cat Island friend Olive King introduced me to another disability Mom called Lenore who has a son with autism and epilepsy. We all visited and compared stories and strategies.

    One day, it would be great to hold a retreat here with all of us and local Moms together. That is my dream. My other Cat Island friend today was chatting with me and we were talking about a mutual friend who is going through the most appalling and unimaginable family circumstances. She said "I wish she (our friend) could be a baby again and I would pick her up and hold her". Isn't that an amazing and beautiful thing to say?

    I love you 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


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna)))))) ~

    I've missed you! But I am happy for you that you've enjoyed a lovely vacation on Cat Island with Jim and your dear friends there, and that Nick has been stable in your absence.

    Are Nick's seizures pain related, do you think? When Nick gets excited, does he tense up? Does he move or sit or lay differently? I'm just thinking about how excitement might contribute to pain. I hope Nick's neuro will offer some good suggestions to minimize Nick's seizures and pain.

    I gather that Nick likes rum?

    HAPPY BIRTHDAY, DONNA!

    Wow! You're turning 60! Welcome to the Wonderful World of Senior Citizenry! It is ... different ...

    A retreat for all of us on Cat Island would be fantastic ~ great dream, Donna. Can you imagine all of us together? Talking incessantly! The power of the energy with all of us in one place might tilt Earth!

    Prayers for safe travels for you and Jim on your homeward journey ~

    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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    Donna, Great update.It's such good news that Nicholas has been stable. Glad you've been able to to connect with your friends. Beautiful statement your friend made... It explains some feeling we all have at times I think.
    Mary Grace

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    Hi Everyone,
    We're home now and tonight Nick is out with Jim at a hockey game. Nick is doing fine except for increased seizures at night. His PRN ativan just doesn't seem to be working anymore. So, we have an appt with the neuro April 14 and in the meantime we're getting blood levels. I had a lovely day long visit with Nick yesterday and we just chatted and hung out. Everything is pretty stable right and I feel like we can solve the seizure - our neuro is good. I'll keep you posted!
    x Donna
    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
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Welcome Home ((((((Donna)))))) ~

    Happy to hear that Nick is stable and out with his dad at a hockey game tonight. But, I'm sorry to hear that Nick's seizures are on the rise. Ativan can wear out its welcome, so to speak. I hope that an adjustment in his seizure meds dosages is enough to put the kibosh on these night time seizures.

    Noting Nick's age of 26 ~ Men go through a hormonal change around this age. My boys did. Jon was seizure free from 19 to 26, then seizures returned. Since his seizures correlate with hormonal changes (2, 13, 18, 26, and mid-40s), neuros agreed with me (imagine that!) that it was hormonally-related.

    Men, whom I've known through the years and asked "what was your life like at the age of 26?" frequently responded, "different, confusing, unsettling ..." So there is something to that theory that men go through some sort of hormonal portal at that age.

    Just tossing it out there for consideration ...

    I can just imagine how wonderful it was for you and Nick to be reunited. I'm sure you had a great visit.

    Hoping that Spring is making an appearance in your neck of the woods ~

    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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    Distinguished Community Member andromeda31's Avatar
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    Hi Donna!

    Glad you had a great trip and are back home safely! I would definitely be up for a retreat there someday, it is fun to see your pictures on fb....the island is beautiful!! Glad Nick is stable and hope they can figure out why he is having seizures. Hormones do sound plausible, I know they told me to watch out for Caitlin since she is going thru puberty right now. Hope the guys have a good time at the hockey game and that he does okay after all that excitement! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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