LaurenM

Your Replies

  • LaurenM
    August 29, 2016 at 6:58 am

    Hi Marcel,
    Apologies for the delay in responding, but wanted to thank you for your post, the info and encouragement. Really appreciate it. Sending thoughts and prayers to you and your mom that her progress continues. Paul’s weaning from the ventilator felt like a journey of inches, but we eventually got there and your mom will too!

    LaurenM
    July 27, 2016 at 1:29 pm

    Thanks for the perspective Jamie. Paul has actually experience severe pain and sensitivity in his feet and hands since early on with the diagnosis. It took quite a period of time for the medical team to have his pain managed through various medications. There is still sensitivity, but not the pain and discomfort he had in the past which was so difficult to watch.

    We’ll keep an eye out for any burning sensations- I asked him if he has felt anything like that yet and he said no.

    I would love to connect directly and hear more about your story and experience if you’d be willing to share. Just let me know how best to get in touch.

    Thanks again,
    Lauren

    LaurenM
    July 24, 2016 at 9:21 am

    Thank you all for the feedback, it means a lot.

    Jamie- Paul is 25, so close in age to you. He does have PT everyday weekday, and I do range of motion on the weekends with him when the PT isn’t there to help keep things from getting stiff. Glad to hear you are improving and I expect the same for him. We’re just going to keep doing what we’re doing and try to be patient that this all just takes time and we’re grateful he’s alive after everything he has been through.

    GH- thanks for your comments as well. He had 7 rounds of PE and then IVIG but said they wouldn’t see a benefit in doing more this far along, just need to give the nerves time to regenerate.

    Eric- appreciate your insight as well. We aren’t giving up hope and it’s great to hear all of your positivity.

    Thanks again to you all, this is very helpful and encouraging for us.

    Lauren