Update on my sister, Sandy.

    • Anonymous
      March 1, 2010 at 11:54 am

      Some of you have emailed me personally to inquire about my sister’s progress. Thank you very much for your concern. We have been very been very busy over here in Chicago.

      Quickly, she was admitted to the hospital on 11/18/09 with paralysis to her lower half. By Thanksgiving it had creeped up the upper half. Around the beginning of Dec, she was put on a breathing tube and 10 days later had a tracheostomy. Since then she has been completely paralyzed and unable to speak, yet fully aware of everything going on. She knows every Dr, nurse, medication and dosage. We had come up with a way to communicate (since she always had so much to say) where we would go through the alphabet and she would blink when we reached the correct letter. It was tedious but at least she was able to communicate with us.

      So here we are…some 3 1/2 months later. What’s new? You wanna talk about baby steps?! She can nod and shake her head. She can put ear to shoulder on both sides. She can shrug one shoulder and turn up the corners of her mouth ever so slightly. She is breathing above the vent consistently. She can swallow and stick her tongue out.

      This is after 2 Cytoxan treatments. She continues to receive Ivig. It seems she is always bouncing back and forth from ICU to the respiratory floor of the hospital. Infection/antibiotics…

      We still are receiving amazing support from family, friends and the community (she is a teacher and church music director).

      She continues to have a sense of humor, although I don’t know how. her husband of two years has slept every single night in the hospital with her.

      The Drs have let her know that it is up to her now. They are simply there to keep her well so she can heal herself. I don’t know anyone who is as strong or as courageous as she has been. She has never complained or gotten angry. She takes each day as it comes and is determined to fight this thing as best she can.

      If you are on Facebook, you can search “thinking of you sandy” and look for updates or leave a message for her. We read them to her whenever we can.
      Thanks for your support. and as i always say….
      Keep the Faith!

    • Anonymous
      March 1, 2010 at 12:03 pm

      I just saw a movie last weekend, “The Diving Bell and the Butterfly.” It is French with subtitles and based on a true story. The editor of Elle had a stroke and was completely paralyzed and could only communicate by blinking one eye. They used the most common letters of the alphabet and would read them to him and he would blink. He wrote an entire book doing this. Amazing story!

    • Anonymous
      March 1, 2010 at 2:38 pm

      [I]Jenny, I went to check out the Facebook site and what wonderful notes to your sister. Reading what others say must mean a great deal to her.

      It will get better. A good friend went a similar route as your sister. There was a pretty long time in hospital and then about 6 months rehab. He was able to drive. He could walk, though did use a cane as an assist.

      And … he and his cane danced at his best friend’s wedding.

      If ever there was something that taught patience …[/I]

    • Anonymous
      March 1, 2010 at 7:38 pm

      Hi Jenny,

      I’m happy to hear Sandy is showing improvement; small victories turn into large ones. Those baby steps turn into strides. I look forward to reading about those, too!!

      Take care,


    • March 2, 2010 at 7:11 am

      Jenny, thanks for the update and glad to hear some encouraging words (baby steps) about Sandy. And I look forward to Sandy personally posting on the Forum someday in the future … She is blessed to have such a caring family.


    • March 2, 2010 at 11:28 pm

      Hi Jenny,
      Iam so glad to hear you sister is healing and on the way to better health.
      Lots of prayers and good wishes.