Today is Emily’s 7th birthday!

    • Anonymous
      September 9, 2008 at 1:56 pm

      It’s hard to believe that my baby is 7 years old. A lot has happened since she’s been on this earth. The world has certainly changed.

      I’ve been thinking back over the last 2 years & 9 months since Emily was diagnosed with CIDP. I remember her 4th birthday party & it was just that – a birthday party. Now her parties celebrate everything that we’ve been through & it’s a chance to look back at everything Emily has overcome. She’s been through more in her short 7 years than I have been in my 30. It amazes me everyday that she still wakes up with a smile, loves life & ends the day waiting to see what will happen the next.

      We had Emily’s family birthday party here on Saturday. Most of the family came – which was nice. Emily, of course, made out with gifts – as she does every year. We’re having her friend party in a few weeks & it’s shaping up to be quite the shin-dig. It’s a dance party & we made backstage pass invitations. They are necklaces & Emily is asking all the kids to wear their backstage passes to her party. I’m going to teach the kids some dances & pass out some prizes. I think I’m as excited about it as Emily is.

      It just amazes me that my kid can dance. Seriously. There was a time, even 2 years ago, that I didn’t think it would be possible. I didn’t know what her life be at this age. I’m so grateful that Emily can live a nearly normal life & seems to be no worse for the wear.

      My wish for this year for Emily is for her to FINALLY take the training wheels off of her bike & to learn to ride with 2 wheels.

      Here’s a pic of Emily at her party on Saturday. Her & her friend played dress up & put on a concert for us in the backyard.


      And these are pics of Emily with her cake




    • Anonymous
      September 9, 2008 at 2:40 pm

      Happy Birthday Emily.

      Kelly, the credit goes to you for Emily’s feeling normal again and enjoying life. God and the doctors certainly get credit too, but they made it possible for you to be the mom that you are.

      Tell Emily she looks gorgeous all dressed up and I love the crooked candles on her cake……….Emma

    • Anonymous
      September 9, 2008 at 3:40 pm

      Kelly, you have a beautiful daughter.

    • Anonymous
      September 9, 2008 at 3:43 pm

      Woohoo Happy BDay Emily! Love that outfit. So wonderful to see her looking so well an happy. Makes my heary happy! 😀 Good job Kelly!

    • Anonymous
      September 9, 2008 at 3:44 pm

      [SIZE=3][COLOR=magenta]HAPPY BIRTHDAY EMILY!!!!!!!:) [/COLOR][/SIZE]
      [SIZE=3][COLOR=#ff00ff]Kelly, I have to agree with Emma, You are the reason she is up , dancing and Living her life to the fullest!!! You’re The Best Mom!!!! Great Job Kelly and Emily for getting through the past 2+ years! Keep Up The Good Work!!![/COLOR][/SIZE]
      [SIZE=3][COLOR=#ff00ff]Emily, you are the Cutest Young Lady I know!!! Its Wonderful to see the Smile on your face! My Wish for You is to have the Best Birthday ever and the Best Year ever!!!:cool: [IMG][/IMG][/COLOR][/SIZE]

    • Anonymous
      September 9, 2008 at 7:32 pm

      Happy Birthday little Emily. What a great mom you are Kelly and what a beautiful little girl. Just a question Kelly–down the road will the doctor stop the IVIG since he thinks Emily is in remission? Is there a game plan for stopping it and assessing i.e. weaning?

    • Anonymous
      September 9, 2008 at 8:20 pm

      Thanks everyone!

      Emily had a great day at school today. She passed out cupcakes & got many compliments on how good they were – triple chocolate fudge & vanilla icing with sprinkles & chocolate chunks on top. I made her favorite dinner tonight, spaghetti & garlic bread & now she’s in the bath. She even caught the ice cream man today & got her favorite ice cream! I’m letting her stay up a little bit later tonight because it’s her special day. She’s looking forward to reading more tonight since she gets to stay up later.

      Laurel – Emily is being weaned off of the IVIG now. We just go VERY slowly.

      She’s currently getting 20 grams every 3 weeks. In October I have to make the decision to go either 3 1/2 weeks or straight to 4 weeks in the lengthening. Emily has always had 20 grams, even when she was 35 lbs. So with every pound she gains I guess she’s getting weaned down there too.

      The goal is to get her off of IVIG completely. I have no idea when that will be. Just the thought of it makes me nervous. I try to not think that far ahead – I just take it one day at a time.

      Her neuro is worried about her port being in her for so long (2 years now). He didn’t want her to get it in the 1st place – so I’m not surprised that he’s still worried. He’d like to get her off of treatments sooner rather than later so she can get the port removed. I’m not so worried about it & I think it’s more important to go slower with the weaning off of IVIG. In the end, the neuro will do whatever I want though.

      Hope everyone had a great day!

    • Anonymous
      September 9, 2008 at 9:04 pm

      Happy Birthday Emily..Glad to hear you had such a great day..Can’t wait to hear about the dance party. Keep us posted

    • Anonymous
      September 9, 2008 at 9:55 pm

      When I had GBS, 32 years ago, I was pregnant. The doctors thought that I would have a better chance of recovery if I aborted the baby. I didn’t, thank God. Her name is Emily.

      Happy Birthday to your Emily.

    • Anonymous
      September 9, 2008 at 9:57 pm

      Happy, happy Birthday Emily and lots more of them to come full of the joy of living. It is so great to be a big seven. Life just has more possibilities! I know that you all know this very well especially considering the last two years.

      Just my two cents on the port. Virtually all of our kids with cancer at our hospital have ports or central lines. For the girls with leukemia, the ports stay in at least two and a half years. For the boys with leukemia, the ports stay in at least three and a half years. I have know a few kids in which the ports stay in five to six years (because of relapses or need for ongoing immunoglobulin therapy in some). Two of the children that I can think of right away have had a port for seven years. As long as Emily needs it for infusions and as long as it does not get an infection that means it HAS to come out, let it be. She is big enough, she might do okay with an IV every three weeks now if she had to, but why not let life be a tiny bit easier on her as long as the port is functioning okay and it might for as long as she needs it, I pray.

      Each birthday is especially precious when a child has been facing a serious illness. We are all so happy that Emily is doing well and that she is doing so well that she can very slowly wean immunoglobulin infusions. It is our prayer that peace stays with her immune system.


    • Anonymous
      September 9, 2008 at 10:48 pm

      You’re right – the world certainly has changed! Emily would have been born a few days before 9/11. I was pregnant with my son who will be 7 in Novemeber and remember thinking what kind of world was i bringing this child into.

      Glad to hear she had a happy day – the photos are lovely, thanks for sharing

    • Anonymous
      September 10, 2008 at 4:38 am

      This is a very happy ending for Emily. She went through a very rough time to now be dancing again. I am so glad she is doing so well and I pray that she continues to stay okay and never gets this mess again!
      So glad she had that wonderful Birthday Party and got to enjoy it!
      This to you has also been the most special day of your life! To once again see joy in your family instead of worries! May she be blessed with many many years of happiness and be free from illness! Hugs

    • Anonymous
      September 10, 2008 at 10:46 am

      Hey Emily! Happy belated birthday!!! I didn’t get to check here last night so missed your big day, but it’s never to late to send birthday greetings. Sounds like your party on the weekend was a blast and the one yet to come is an awesome idea. Your friends are gonna love it.

      Hugs to Mom too! Kelly, your daughter is so lucky to have a mom who never gives up. I am the mom of a son with a disability. Although different issues, some things are the same. We never stop fighting to get our kids needs met. Good for you!