Chicago

This past weekend was our biannual trip to Chicago to participate in the Natural History Study for Rett Syndrome. Basically it's a chance to meet with some wonderful Rett experts. They collect data on Annie, skills she's lost or gained, medical issues that have come up since the last meeting, her height, weight, etc. All in an effort to gain more information about Rett Syndrome and how it affects our girls. We also have a chance to ask any questions that we may have about Annie and any problems she may be having.

Our meeting was not until Sunday afternoon and we had decided that we would just make the trip in one day, drive there for the apt. and then drive home right afterwards. But once I realized that the kids had Monday off of school we changed our minds, packed up the troops and took the family with us. I'm so glad we did, we had a blast.

We arrived Saturday evening just in time for dinner and then a dip in the pool - too bad we didn't bring the camera for that Annie had the BEST time swimming - looks like we'll have to come visit Aunt Katie's pool this winter!! Sunday we woke up, went out to breakfast and then headed to Navy Pier. The kids LOVED the boats!! The Chicago Children's Science Museum was right on the Pier so of course we had to check that out. Then it was off to Rush Medical Center for Annie's appointment.

We were the absolute last apt. of the day so the place was pretty empty when we arrived which was a little disappointing because we were really hoping to see some other families, but it did mean that we were in and out in record time. The appointment was all positive. Annie has gained weight and a couple inches and her doctor was thrilled with how healthy and strong she looked. This was great news especially coming off of almost 3 weeks of being sick. We thank God for Annie's health, we know how blessed we are when we hear of the struggles some of the other girls are having.

After the appointment we were back in the car and heading home. The kids did so great and it ended up being a very relaxing and fun trip for all of us -well except for Scott who so graciously drove all the way there and all the way back while I caught up on some much needed sleep! - Thanks Scotty!!

James and his giant pancake breakfast!

James and Gracie on Navy Pier


The Ladies on the Pier!

James and Grace in front of the Inventing lab - I think James could LIVE here!

James and Grace - inventing!

Annie was exhausted when we were at the museum but not too tired to give us a little giggle when we stuck her hand in the T-Rex's mouth!! Good Hands cutie!!!

Gracie turning the water wheel

James and Scott building water channels!

Toast to a Cure!

Well, "Toast to a Cure" is over, it was last Thursday evening and it was such a blast - if I do say so myself!! We had a great time catching up with old friends, meeting some new ones, talking with family and friends all night long. The night went by so quickly, I wish it could have lasted forever (but honestly I'm more of a "slippers" girl these days so my feet were KILLING me in the "cute shoes")! We had so many people come out and support us I hope I got to each and everyone one of them to thank them personally but I'm sure there were a couple that slipped by me. I also did manage to get up in front of the dredded mic too and give a thank you - lets just say talking in front of groups is not my forte - especially when it's as emotional as a fundraiser for my sweet angel. We are so blessed to have such a wonderfully supportive group of friends and family. Your love, friendship, support and prayers make this journey so much easier! Love to you all!

The Harsh Realities...

This is Rett Syndrome.
When you see the slide "Our girls were dragged Kicking and screaming into a world all their own" please remember the years we spent with Annie crying inconsolably for upwards of 48 hours - this was Rett, taking her..... Then look for her after "most have no hand function". Won't you please help? Visit www.reverserett.org

Rett Syndrome

This is a Public Service Announcement for Rett Syndrome. Pause the blog music at the bottom of the page and please take 90 seconds to view and then pass it on! It is imperative that we raise awareness for these beautiful, smart girls. Awareness will raise funds and funds will get us a cure! The science is there, the funding is not! Please join us in our efforts!

Catching Attention

I'm sorry my posting have been sporatic at best lately. We've been so busy throughout the month of October - Rett Syndrome Awareness Month! And of course Toast to a Cure is just a couple days away now. We were thrilled to get 2 articles in the paper to raise awareness you can read them here:
http://www.freep.com/article/20091103/FEATURES01/911030364/-1/rss07


http://www.theoaklandpress.com/articles/2009/10/28/life/doc4ae811ae9bb54411416940.txt

Hope to see lots of people at Toast to a Cure!!

Toast to a Cure!

We're getting close to Toast to a Cure! It's just 1 week away!! This is sure to be a great evening of wine tasting, great appetizers, live jazz music and some great door prizes!! The best part - all money goes towards finding a cure for Rett Syndrome! We're selling tickets in advance to ensure enough food and wine for everyone :) Tickets are $30 each or 2 for $50 so buddy up and email me or go the the website to buy your tickets! We hope to see you there!

Everyday Miracles and CK photography

A few months ago our family was blessed to have a wonderful, talented friend take pictures of us. Christy is a friend of mine from high school. She had heard about Annie's story when we reconnected via facebook. Christy was so gratious to take the trip from Grand Rapids to come out and do a photo shoot in downtown Rochester. Christy posted pictures of Annie along with her story on her blog and what's more is she made a slideshow video of our family. Christy is amazingly talented and has such a gift for photography and capturing the spirit of families. You can click on the CK picture to the right to check out her blog and see what I mean!

Thanks Christy! We Love You!!!