Recent content by mommy2boysNC

  1. mommy2boysNC

    Sharon, you helped me a lot over the past year. You were a great listener. I'm so sorry I...

    Sharon, you helped me a lot over the past year. You were a great listener. I'm so sorry I dropped off the face of the earth due to stress with my husband's father the last 2 months. I thought about you often. I was going to write you last week and didn't and for that I'm regretful. I ♥ you...
  2. mommy2boysNC

    Talking to the kids

    Knowing the progression is worsening, I was trying to come up with a game plan on how to prepare them for the changes and the inevitable. When my mom died, he would even look at her picture for a few months. :(
  3. mommy2boysNC

    Talking to the kids

    It breaks my heart to see how its effecting him, because he definately understands a lot, enough to confuse and scare him. The emotional maturity isn't there yet though. My 5 year old is very resilient. Thanks for that link!
  4. mommy2boysNC

    Talking to the kids

    Advice please on now to discuss ALS with my 7 year old? He's having a tough time. Sometimes he is open to talking about it for 2 minutes and sometimes he is like a locked door. Certainly back off, not wanting to push him. How'd you guys do it? It's his grandfather who has ALS.
  5. mommy2boysNC

    upcoming clinical trial of Mexiletine

    Oops! My first post didn't post. Been a while since I have posted. Perhaps I messed up. Was just saying we have read the same info as Just.
  6. mommy2boysNC

    Come for tea

    Speaking of Chai! Yum! It makes my house smell so good and my 5 year old loves it!
  7. mommy2boysNC

    Hey, we are from NC! Did your doctor say say anything about heart patients of his who have...

    Hey, we are from NC! Did your doctor say say anything about heart patients of his who have taken it specifically? We read the same scary stuff you did.
  8. mommy2boysNC

    upcoming clinical trial of Mexiletine

    One more question. When did this trial start?
  9. mommy2boysNC

    What are you reading? (In memory of Allen (trfogey)

    I just read Hopeless by Colleen Hoover. AMAZING! I just finished The Edge of Never. Can't remember the authors name. Its not a common one. I really liked it too. Luckily, my husband doesnt complain about my reading habits $$$$ I may not get to bed! It's already almost 4:30am now.
  10. mommy2boysNC

    upcoming clinical trial of Mexiletine

    I'm planning on watching the webinar. We have heard the same thing here. We asked a pharmacist friend about it after we read for ourselves. My husband talked to his gp about it Monday while he was there getting some meds filled. He said you have got to be careful with anti-arrhythmia drugs...
  11. mommy2boysNC

    Shane has died/his note to family,friends

    We think the world of Shane!
  12. mommy2boysNC

    Please sign our petition if you haven't already!

    Please sign and drop by and visit us on Facebook too! There is a group page and "like" page. Let's keep this thread bumped up high so everyone sees it! :)
  13. mommy2boysNC

    Good luck!!! :)

    Good luck!!! :)
  14. mommy2boysNC

    Anyone from NC?

    Allison, I hope you can get back here to be with your Dad. That has to be hard. We are only 1.5 hrs away but, I know my husband will struggle as things get worse with his Dad.
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