Mar 9, 2011

Ayla's Rheumatology appointment and EXCITING NEWS!

Ok, wow, I realize that it has been too long in between posts but this Winter has really been bad for us. With the exception of the last two weeks, someone in our family has been sick (including myself) for the past 8 weeks! We have had the flu, croup, respiratory infections, strep throat, stomach virus... you name it and someone in my house has had it. I am so ready for the warm weather to get here, it can't come soon enough :)

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Ayla had her Rheumatology appointment a few weeks ago. She was actually excited to go so she could give Dr. Huggins a Valentine treat! Ayla made her a card and took her candy. She really likes Dr. Huggins and has always felt comfortable with her. We are so blessed to have such a great provider for her. I honestly can not say enough for Cincinnati Children's Hospital, it is a WONDER facility and I am so thankful for the care that we receive there! I just wish it were not almost 4 hours away :( it makes for a long day that's for sure!

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Ayla's appointment went well. She is still doing well and her labs look great so we decided to start decreasing her Methotrexate. If all goes as planned, she should be off of it by August when she starts Pre-School! She is and will still be on Enbrel for at least another year, she still complains of neck pain occasionally, but at least we are headed in the right direction!


So for the exciting news, this Month marks the third year since Ayla was diagnosed. One of the first things I did when she was diagnosed was check into seeing if our area had a local Arthritis Walk. I was so eager to advocate and raise awareness for this disease, most people do not know that Kids can get Arthritis too! I was upset to learn that my state did NOT have a walk nor did we have a local Arthritis Chapter. I called the nearest chapter and discussed starting a walk with the person who is over the walks. She encouraged me to try and get a committee together and to actually start one in my area. I was excited about this opportunity but was let down pretty quickly. I could not get enough people interested and it was such an overwhelming task for me because Ayla was not yet in remission and less than two years old and Brennan was only a few months old. I decided that I would have to wait until there was a better time.

(This is Ayla on the day of diagnoses, three years ago, so precious!)

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So out of the blue a couple of weeks ago I get an email from a local young lady wanting to know if I was interested in helping her with getting an Arthritis Walk together. What? Really? I was so excited and what an answer to prayer. I have wanted this for three years now! Her niece was diagnosed with arthritis two years ago at age three so this is very close to her heart as well. So we had our first committee meeting last week and we are having our FIRST ARTHRITIS WALK/RUN on September 10th, 2011! This is a HUGE task but one I am ready and willing to take on. Our main focus at this point is getting sponsors and raising money. I know a few of my fellow JRA moms have experience in this area so PLEASE I am willing to listen to any advice that you can give me! Erica, you out there..lol!!! I am just so excited for the opportunity to raise money and awareness for the Arthritis Foundation!
These next few months will be so busy but SO worth it! Let the advice begin!!!

6 comments:

Robin said...

such exciting news!!! And so glad to hear she is doing well.

Erin said...

What great news! CCH is very near and dear to my heart too - my niece received a liver treatment there and we actually went to the hospital back in September to celebrate her 5 year transplant anniversary! My whole family sing their praises!

Claire said...

Very exciting news!

Cxx

Living AutoImmune said...

Lesli that is awesome!

Coco's Crusaders said...

that's great!!! really glad to hear she is getting closer to being off of mtx!

Amelia's Corner said...

So proud of you ! It is hard to believe it has been three years. Miss you love you.