Very quick update on Emily

    • Anonymous
      July 8, 2011 at 11:42 pm

      I am very excited to announce Emily has gone 5 weeks + 1 day between IVIG infusions. She’s getting 20 grams every 5 weeks! (and she hit a growth spurt & is now 86 lbs!)

      Emily has been a very busy girl this summer too. She’s roller skating & playing baseball…doing each activity twice a week. On Wednesdays she goes to roller skating practice & then plays 2 hours of baseball.

      I hope others out there can remember that you can get better. It just takes time (5 years to get to the this point!) and, in Emily’s case, a whole lot of IVIG!

      Happy Summer!

    • Anonymous
      July 9, 2011 at 1:02 am

      Thanks for sharing!

      Wishing you and Emily a fun filled, active summer ๐Ÿ˜€


    • Anonymous
      July 9, 2011 at 7:12 pm

      I am so excited for Emily ‘ ‘ ‘

      I’m also spacing out my infusions and hoping for equal success. :p

    • Anonymous
      July 9, 2011 at 11:56 pm

      Thanks Rhonda!

      Limekat – I hope you too have success with the spacing out! Fingers crossed for you!


    • Anonymous
      July 10, 2011 at 12:49 am

      Kelly is so uplifting to read about how well Emily is doing! Fingers are crossed that things stay this way. Hubby is going to see a vascular surgeon about the possibility of getting a port. Any advice for this preliminary visit? They are having lots of trouble finding his veins. He is a 62 yr. old overweight fellow who sleeps on his stomach and he is squeamish at the best of times. .

    • July 11, 2011 at 6:19 pm

      Great news about Emily. I am new to IVIG. Only had three infusions so far. I am trying to get to 4 weeks between but seem to start to get symptoms back at around 14 days. Is there anything I can do to lengthen time between the infusions? It is very frustrating to have to spend so much time in the infusion center. I guess I need to be patient as this is so new to me. Maybe time between will come in time. Good for Emily!!!

    • Anonymous
      July 12, 2011 at 6:14 am

      What a thrill!! You and Emily have been an inspiration to me ๐Ÿ™‚ Someday, I too, will run again ๐Ÿ˜‰ Have a fantabulous summer doing all those fun things together ๐Ÿ˜€ Judi

    • July 12, 2011 at 11:47 pm

      I’m new here, and don’t post much. But I really need to tell you, however, that your little girl’s experience has been so inspirational to me. It gives me hope that someday I will have the health to do many of the things I once did with my own little girl. Roller skating in particular has always been a favorite of mine since I was a very young child. If I can go back and do that again I would be thrilled beyond words. I do remain optimistic that someday I will go from wheelchair, to walker, to roller skating beside my daughter. I’m one to think if I can see it in my mind’s eye; I’ll achieve it. Having the attitude of your Emily, and that of all the other children who live with CIDP shall work wonders no doubt. Congrats!!!

    • July 13, 2011 at 6:40 am

      Nice thread Kelly, glad Emily is enjoying some Summer fun:)

    • Anonymous
      July 13, 2011 at 4:32 pm


      Great news! I hope you and Emily have a great summer

    • Anonymous
      July 13, 2011 at 11:25 pm

      Laurel – Personally I would recommend having the port put in in the subclavian. I have a really great link that explains the surgery very well. [url][/url]

      Sleeping on his stomach should not be an issue. Emily has slept, with her port accessed, on her stomach MANY times. As far as being squeemish…Emily is too. We would put a special blanket in front of her face during access so she couldn’t see the needle coming at her.

      It’s a very easy surgery & I really think it’s worth it if you are having vein accessing issues.

      ChirpyBirdy – I understand your frustration with your IVIG schedule. There really isn’t anything you can do to lengthen the time between your treatments. Do you have to go to an infusion center? Can you have your infusions done at home? Having them done at home really made all the difference in the world for Emily. She needed IVIG 2-3 times a week in the beginning.

      Lovemotherhood – Thank you SO VERY MUCH for your kind words. I agree that positive thinking makes a world of difference.

      Judi Z, Northernguitarguy & Jim C – Thanks! We just got back from a 4 day camping trip. Emily has discovered a love for fishing…which should make my husband very happy, LOL!


    • Anonymous
      July 15, 2011 at 11:52 am

      Thanks Kelly. I haven’t figured out how to look at the link yet, but will try again.

    • Anonymous
      July 17, 2011 at 10:53 am

      Sorry Laurel – The site is automatically putting “URL” in the link at the end. Can you try just typing the link in? I don’t know why it’s doing that…UGH.


    • July 28, 2011 at 9:39 pm

      That is such good news—glad to hear she is doing good ๐Ÿ™‚ I can’t even begin to imagine how hard it must be for a child to go through this. that is one thing that I am greatful for—is that if someone had to get this it was me and not one of my children. From all of your knowledge and posts on this site i am sure you are the reason Emily is where she is today Kelly. Hope all continues to go well for her and she can be done with ivig for good one day. Lori

    • Anonymous
      July 29, 2011 at 9:47 am

      Hello Kelly,

      Just stopped to look at the forums and saw your post. Thank you for keeping us up to date on Emily. This is wonderful news.

      Over the years Emily and your family have been through so much. You have been such a support to Emily and many others here at the foundation. Thank you for giving hope to those who continue to look for answers and support.


    • Anonymous
      July 29, 2011 at 3:32 pm

      Lori – Thanks! I honestly believe Emily is where she is today because nothing can hold this kid back! She is an amazing person & I’m just lucky enough to be her mom.

      Kassandra – Thank you for the kind words. It’s true that hasn’t always been easy for our family. I remember needing the support of the people here & how grateful I was to get it. I made a commitment to help as many people as I can here because of the support I received.

      Hope you all are having a great summer! We are gearing up for another camping trip. It’s nice to be able to go away & not worry about Emily’s health.


    • August 1, 2011 at 1:50 pm

      No I can’t get them at home. Insurance only covers 80% of in home infusions and 100% at the center. Bummer. I guess I just have to deal and hope the time lenghtens between over time. I was wondering about Cytoxin. I hear this gives you a better chance of going into remission than staying on IVIG forever. But what are the repercussions of taking Cytoxin? I hear it can cause cancer…that really scares me. To finally go into remission for CIDP and then to learn down the way that you have cancer! I just don’t know enough about other treatment options. I know I don’t want to go on Prednisone. I tried it in the beginning and felt just horrible while I was on the pills. Plus I am afraid of gaining weight and getting the round moon face. I sure which someone would come up with more options for treatment of CIDP and even a cure!!!

    • Anonymous
      August 3, 2011 at 10:36 am

      Always glad to hear positive news on here. So happy for you and Emily!