Thanksgiving!

We had the most amazing time at Thanksgiving with my family. My mom, as always, made such a great meal, turkey, stuffing, mashed potatoes, pumpkin pie, the works!! It was so nice to get the family together to talk, let the kids play and enjoy eachothers company. Thanks mom for a wonderful evening!

Beautiful Emma, getting her groove on!!

Our wonderful Uncle Jeremy!

Our newest addition - Matthew James O'Neill!

Joe, James and Annie enjoying a movie.

Best Buddies! Annie had such a great time, she smiled all night long!! Gracie and Emma being silly together!

Use your Girl Power to fight Rett!

Girl Power 2 Cure has something new we'd like to share with you! It’s the new Girl Power 2 Cure toolbar – once added to IE or Firefox, each time you shop at more than 1,300 stores (from Amazon to Ebay!) a percentage of your purchase will automatically be donated to Girl Power 2 Cure – at no cost to you (and you may even save money as the toolbar provides coupons and deals as well!). Now is the perfect time to start using the toolbar as you begin your Christmas shopping!! You will be raising money for Rett Syndrome research with each online purchase!!The toolbar also has a search box and each time you search the Internet, about a penny is donated to Girl Power 2 Cure http://www.goodsearch.com/toolbar/girl-power-2-curePlease pass this along to all of your friends. The two minutes it takes to add this toolbar to your browser can make a lifetime of difference for our Rett Syndrome angels!Get the toolbar NOW! Click Here!

Weekend Things

We had a nice, relaxing family weekend this week which was so refreshing because of the crazy schedules we've been keeping around here. Saturday Scotts work had a family day so we packed up the kiddo's and went to American Axle to check out where daddy spends his day's. James of course LOVED every minute of it and Gracie was pretty entertained as well, unfortunatly Annie could have done without the machines and noise, not to mention the cookies and donut holes everyone was gobbling down that are not part of a gluten-free diet. The kids left with bags of American Axle goodies!

Sunday was also relaxing. We all went to church together (which we haven't done for quite some time now) and Annie spent her very first day in bibe school!! Of course I stayed with her and we had a blast!! Annie smiled the whole time, she loved being with the kids and made some new friends. There was a sweet little boy who was watching me do hand over hand with her art project and told me to be very careful with her because he thought that her arms were hurt (she was wearing her arm braces). How sweet that on day one she already has friends watching out for her!! Annie spent the rest of the day laughing and smiling! Gracie also went to bible school today - she went in screaming and crying but came out with a huge smile and was so proud of the project she had made! I'm hoping they remember this Sunday so next Sunday will go just as smoothly!!

Chase Community Giving

Chase Bank is giving away $5 million to various charities and they are letting the public decide which one. The Rett Syndrome Research Trust is among the many non-profits in the running. The results of the research that would come out of this type of gift could be life changing to Annie and the thousands of girls like her. Please vote! Round 1 for voting ends on Dec. 11 and then a second round a voting begins which will give you a chance to vote again. I've said it before and I'll say it again, The science is there, the funding is not. Please help us by voting for the Rett Syndrome Research Trust!

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!!