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Thread: Just checking in...

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Cn reunion

    ((((((Paul))))))

    You read my mind!

    I've been thinking about organizing a CN Reunion since this new site went live.

    I am not on Facebook (and am probably the last person on Earth, who isn't and never will be), so I miss our CN family very much. I wonder how all of our members and their children are and the changes going on in everyone's lives. We were once so connected here, and it feels like everyone moved away from the neighborhood.

    I began lurking at CN in 1999, and at the urging of Mama Sue, I joined and began posting in 2000. So that's 11 years of posting, 12 years of following.

    In the U.S., we are approaching a holiday, Labor Day, which means a 3 day weekend. Some children have returned to school or will be doing so next week. So this is a busy time for all families here in the U.S.

    Now may not be the best time for us to launch a reunion campaign, but I guess we could get the wheels turning and target a date when we hope our CN friends will have time to post here.

    One of your contests, with your great prizes ought to lure 'em back, Paul! You're so sweet!

    For those who are on Facebook, spread the word that we're planning a CN reunion. In fact, I'll start a thread to get the movement rolling. Then everyone can link to that thread on Facebook.

    I'm so glad you brought this up, Paul. For me, at least, it would be wonderful to catch up with our old friends here, but we could also have lots of fun, like we did in the old days.

    CN REUNION! Let's Do It!

    Love & Light,

    Rose

  2. #12
    Distinguished Community Member
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    You win Paul. I've been here about 14 years. Hard to believe. Remember the original? Hard to navigate and you really had to hunt for messages and
    information. No color, no definition, no icons, just desperate families looking to connect with others who could understand their day to day traumas.
    Would love to hear updates on many of them.
    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."

  3. #13
    Community Member
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    I have no idea when I signed up. Amanda was born in 95 but I know it wasn't that early. Probably more like 2000. Been too long ago now to even remember. Just very thankful this place existed. It gave me much needed support when I was alone and didn't know where to turn.
    Carrie mom to Amanda my new angel 12-29-07.NO LONGER DXD Multicystic Encephalomalcia, Acryptic CAH, Loved to watch mtv hits, wrestling, 3 stooges, Andy Griffith and Spongebob Square pants.

    And Josh 21 year old brain.

  4. #14

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    I'm around. Glad to see familiar "faces."

  5. #15

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    I am here as well. Lots happening in my world. As for specifically relating to CN, I believe Matt was two when I joined here and he just had his thirteenth birthday... he's having botox tentatively this week followed by serial casting in order to avoid a surgery consult. I'm not thrilled about it but will allow one last trial...
    Noah (8) was dx'd LD and ADHD this week.
    Anyway, I'll keep in touch also.

    lucinda
    Lucinda
    mom to four boys who keep things interesting...

  6. #16

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    I guess it has been a while since I've been here. New look and all. Still here will try and check in more often. I think I have been around for about 12 or 13 yrs. This place was my lifeline for many years. So many old and dear friends.
    Last edited by Tracy Sheppard; 09-07-2011 at 03:34 PM.

  7. #17

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    Hmm maybe 11 or 12 years. I wanted to find people who knew what it felt like to have a seizure, and then also to find a proper diagnosis for Travis. There were lots of thoughts and not much happening with the paediatrician, and the visiting paed neuro was going round in circles as well. We finally got on the right track and have been able to give T the right drugs and management.
    It good to see the forum back even though I don't post much.
    Yvonne xx

  8. #18
    Distinguished Community Member andromeda31's Avatar
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    Hi!
    Still here! Need to come by more often though! I started around when Caitlin was 2 or 3....I didn't really 'fit in' anymore at the Prematurely Yours board I was posting at, Caitlin was way more severely impacted than the others there. I had started looking into the hydrocephalus association and saw postings from Lizard and a link to here and voila! Here I am!!! :) (so 7 years I would say!)

    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!!

  9. #19
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    Paul, you pushed me here from FB.. I am so TIRED of changes :-( I can't remember when I first found CN. I know it was SEVERAL updates ago. I think Heather Riley was 3. We thought she had a stroke, had no idea what was going on with her. Found out she was having seizures and todds paralysis- much later-

    Seems like a lifetime ago! She is 12 now.

    Life for us the last several months has gotten busy. At the precise moment Heather Riley is very rock stable which is a miracle. August she was in the hospital 4 times with status seizures. It was very discouraging. I returned to school and felt crushed, her health declined and it made me worry that I had made the wrong choice. LGS cycles of good and bad,she is back into a good cycle. I am praying it lasts.

    Heather Riley is in group Faith Formation for the first time, we put her with 2nd grade. She loves it. I stay with her as a one-on -one. She looks forward to it every week. This year she will have first communion with this group of kids. We haven't felt like she was ready until now. She is very excited. We all have a lot going on and there are lots of changes going on in everyone's life.

  10. #20
    Distinguished Community Member
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    Hey folks.

    It is good to see the old faces and the new faces again.

    Let's get the child neuro folum up and running and so busy that it is difficult to keep up with the posts :)

    So, lets get cracking :)

    Seeya all here soon.

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

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