Update on Emily (actually it’s really bragging)
AnonymousJune 26, 2007 at 1:46 am
I thought I’d do a quick update on Emily just to let you all know what’s going on with her. I hope I don’t jinx anything with this.
SHE IS DOING FAB-U-LOUS!
She’s getting IVIG alternating every 7 days & every 10 days. She just went the 10 days & did FANTASTIC! She had zero deterioration! We’re going to do this for 2 months then wean her again to once every 10 days. It’s amazing to FINALLY see this much progress. A year ago she was getting 9-10 IVIG treatments a month and was still in some pain. She rarely has any pains now & is doing things I never thought I’d see her do.
We’ve been swimming everyday in an in ground pool. A few weeks ago she went over to the side & PULLED HERSELF UP & OUT OF THE POOL! I remember doing that when I was a kid & it’s not that easy to do. She is also able to hang (using her arms) on toys at the park. She couldn’t do that 6 months ago! Oh and at the dr’s office a few months ago, she lifted her leg up onto the exam table & used her arms to pull herself up. This is amazing because the CIDP left her with hardly any upper body strength.
It’s almost like I have a “normal” kid again! She’s super active now & is actually a pretty fast swimmer all of a sudden.
We’re not at the every 4-6 weeks treatments like most CIDP’ers but since she’s a unique case, I’ll take every little bit of progress as it comes. I am hopeful that one day she will be off the IVIG and living a perfectly normal life. Her neuro actually said to me at her last visit that he thinks she will beat this. She’s a determined little girl & nothing will stop her.
Determination is the key! EVERYONE needs to remember that. If no one ever learns anything from Emily’s story, I hope they take that much away at least.
She had an appointment with her eye dr in May & he said that her eye is at 95% and he doesn’t think it will ever get any better than that. He said that it takes about 1 year for the eye muscles to repair themselves. Even though Emily’s eye has been affected for more than a year, he still wants to hold off on any surgery. He wants to give her as much time as possible to heal on her own. We go back for another exam in August and we’ll discuss the surgery again then.
I know I’m doing alot of bragging but I have to add that she is 5 years old (6 in September) and going into 1st grade in September & is easily reading 2nd grade books. We got her report card & it said that she was above grade level in EVERYTHING!
I hope that everyone else is doing well too. I think we should try to update each other every once in a while. Just so we all know where everyone is at. I think of you all often & wonder how everyone is doing.
Hope everyone is having a great summer.
AnonymousJune 26, 2007 at 4:56 am
Congratulations Emily!!!!!!!!!!!!!!!!!!!!!!!! I am soooo happy for you all. This is truly a wonderful optimistic message for everyone! I tell you, all those IVIG’s (needles, yuk)……Emily is truly a brave and courageous and determined kid.
God bless her and continued improvement. 🙂
AnonymousJune 26, 2007 at 7:37 am
Yeah for Emily !!!!!!! That is awesome news and I will keep my fingers crossed for continued improvement. What a special little girl. And, a special mommy you are…as a mother, I know when our babies are ailing it takes everything we have to stay strong. Kudos to you as well !!!!!!!!
I’m so happy to hear she’s able to be a kid and enjoy the summer even tho she has to have treatments.
Your story made my day !
You’re both in my prayers.
AnonymousJune 26, 2007 at 7:48 am
What a great update! Its so good to hear that Emily is doing well! I hope she continues to have a great summer. Keep the updates coming. The kids hold a special place in our hearts as we know what we feel like and they just don’t deserve it! Give her a high five! 🙂
AnonymousJune 26, 2007 at 7:58 am
OH I LOVE BRAGS! EMILY HAS DONE SO WELL! Only one more case that proves that it just takes time and the right combo of meds to keep us comfortable while the body heals. I am glad that Emily is enjoying life. This is starting out to be a great Summer for me. I am able to do more around the yard and with my flowers. Last Summer all I had was pictures of flowers to look at that Ken posted. This year I am getting to see the flowers as they bloom. Keep up the good work Emily! Kelly thanks for making this day a bright one for me! I know I will be thinking of Emilly all day!
AnonymousJune 26, 2007 at 9:34 am
What a wonderful post to wake up to! I am so happy her treatments are working for her, & that she is (almost) able to live like every other child & enjoy all of these activities. Also, what is even more optimistic is that children so young have a good chance of the CIDP actually burning out. Let’s all hope that that is what is down the road for her.
And everyone who has something positive to say, or any good news, it is refreshing to hear that as well as the bad.
June 26, 2007 at 2:00 pm
Glad to hear Emily is doing great! Before you know it, maybe she will be every six weeks! I do not have the exact site in front of me, but try this, Our experience with chronic inflamatory demylienating neuropathy or Whitneys story. I will try to locate the piece of paper w/ the site and e-mail it to you if you cannot find the site. It is a great story about a young girl and her journey w/cidp. It has a great ending!!!!
AnonymousJune 26, 2007 at 8:18 pm
I’m really not much of a hugger, but I swear, if I were anywhere near Michigan, I’d get a hold of you both and squeeze you to death. With all the difficulties Emily has had to endure, I sometimes forget she is only 5 years old. This is such great, good news – I hope Emily will run and swim and play for days and days and days to come, until this is all a distant memory of her past.
Have a happy summer!
AnonymousJune 28, 2007 at 4:57 am
Thanks everyone. It is SO nice to come here & know that you all know what we’re going through. There are so many people in my life that just don’t get it. When I say “Emily hung on the monkey bars at the park today”, I can tell that they are thinking “OK” and not “Oh my gosh, that is great!”. It’s just really nice and I appreciate you all so much.
Dawn – thanks for the info on that story. I did get your phone message yesterday. Thanks for calling. My answering machine cut you off so I didn’t get to hear everything you said, assuming you kept talking. I’m going to Google that story & see what I can find.
Thanks again everyone.
AnonymousJune 28, 2007 at 10:29 am
Kelly, Thanks for the wonderful news about Emily. I’m sooo happy for her and for you also. I can understand how you are feeling inside, when you see Emily playing and doing normal kid things. Actually, I like to go to the park with my kids and try to hang on the monkey bars-just to see if I’m improving any and am able to do something new.:D and it keeps me feeling young and hopeful!:) Thanks for making my day, I can just picture the smile on your face while you are watching everything that Emily can do. Big Hugs to both of you!
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