Wanted to share something Emily said today

    • Anonymous
      May 31, 2011 at 11:06 pm

      As I’ve mentioned here before Emily is taking roller skating lessons. Today was the dress rehearsal for the upcoming recital. While I was curling Emily’s hair we were talking & she says “Mom…are you proud of me for skating?” I replied that I was. She then asked if I was more proud because she was skating & has CIDP. I told her that I was certainly more proud because she has come a long way [I]& [/I]I know how hard she has worked to get here.

      She then says “You know…some days I forget I even have CIDP”.

      That to me is success!

      My kid can go about her normal everyday life & not worry about her illness. Of all the things I’ve done wrong in life at least I know I’ve done this one thing right! (GO me!, LOL)

      And by the way…Thursday will be her last every 4 week treatment. We’re going to see if she can go 5 weeks now! FINGERS CROSSED!

      Hope everyone had a pleasant holiday weekend. We spent Monday lounging by the pool.


    • Anonymous
      June 1, 2011 at 7:48 am

      You go Kelly!

      As a mom it had to make you feel great when Emily made that statement.
      She has come a long way and is able to enjoy her young life.
      You have an amazing daughter.

      Great times always Emily.

    • Anonymous
      June 1, 2011 at 1:47 pm

      That is a really positive indication –that she on some days forgets she has CIDP. Great Kelly!

    • Anonymous
      June 1, 2011 at 5:43 pm

      Reading your post on what Emily said made my day, thank you.
      I hope I can stretch my infusions out too and we’re already discussing it.
      Got new [I]IG Living[/I] magazine today and main article is “Lifelong Need for IVIG ?”

    • June 1, 2011 at 7:42 pm

      So happy for Emily and you Kelly. I made the same remark to my wife Tuesday; then the CIDP flared up again. Oh well, sigh … CIDP hasn’t gone away after all.

      My neurologist said early on his goal was to get me to the point where I wasn’t focused on CIDP every day. We’ve achieved that and so much more. God has been very good to me.

      I pray that God will grant Emily complete healing and she wouldn’t live a life focused on CIDP.


    • Anonymous
      June 1, 2011 at 9:07 pm

      Yay Mom!

      What a wonderful thing to hear. ๐Ÿ™‚

    • Anonymous
      June 2, 2011 at 12:22 pm

      Kelly, that is wonderful! Brought tears to my eyes…that is every parent’s goal right?…to make sure that your child’s life is safe, healthy and happy!! Kudos to you.

    • June 2, 2011 at 9:49 pm

      That was such a nice post to read—I am glad Emily is doing so well : )

    • Anonymous
      June 2, 2011 at 11:04 pm


      I truly am happy for you, Emily and your entire family. What a precious moment – thank you for sharing.

      Wooooo Hooooo!!!!!!!!!!!!!

    • Anonymous
      June 6, 2011 at 2:40 am

      That statement brings tears to the eyes ๐Ÿ™‚ I wish for the rest of her days to be so. What joy for you ๐Ÿ˜€ Thanks for sharing. jz

    • Anonymous
      June 6, 2011 at 8:55 pm

      Thanks everyone. I cannot tell you how happy my girl makes me.

      She had her recital yesterday & she did GREAT! I am just SO proud of her! 5 years ago, after getting her diagnosis, I never would have thought she would be able to roller skate & do it well.

      Kelly (one proud mama!)