Team Annie!!

Girl Power 2 Cure's signature event is called Dress Up 2 Cure! Over the past 3 years, during the month of April, more than 5,000 people have participated Dress Up 2 Cure to raise money for Rett Syndrome Research, raising a total of over $120,000. This year we have created Team Annie and we would like to ask all of you if you would help us! If we all work together we can raise some serious cash and continue to move the research towards our cure! Are you interested? Here are some ideas that you could help us with:

Movie Proceeds - Could you contact your local theater; see if $1 of each movie sale could be donated for the month of April?

or

Drink of the Month - Could you contact your local Coffee Shop and/or bar about having a “drink of the month,” a portion of sales would be donated?

Restaurants – Would you be able to hold fundraising night at a restaurant? Work with the restaurant on how proceeds will be donated. Some will give you a certain percentage of their total sales while others will give you all of the money they earned from selling a certain item. All you have to do is distribute fliers with information including location, time, and what the event is promoting.

Cuts for a Cure – Could you check with your salon to host a special fundraising day? Some salons will ask their staff to donate a portion of their services or tips.

Casual for a Cause – Could you ask your employer to consider hosting a “Jeans Day” or “Casual Day”? The employee’s that participate would make a donation.

Church Events - Would you be able to hold a dinner, pancake breakfast, bake sale, bingo night, etc. at your church?

Garage Sale - Could you ask your friends, family, and co-workers to donate items to your garage sale, the bigger the better!

Donation Jars - Would you be willing to place money jars at popular local businesses; on ticket counters, check-out stations, concession booths, and deli counters.

Schools - Do you have kids in school? Would you be willing to host a "Dress up 2 Cure" at their school? The kids are educated on rett syndrome and disability awareness, then they bring in their spare change on April 1st and get to dress up as silly as they want!

We would LOVE for you to help us out with this event. If you have time please consider helping us. If you're pressed for time but want to help maybe you could help us spread the word on your blog, facebook or through email. Please let me know if you're interested and I will help you every step of the way! Thanks for all the continued support. Together we WILL make rett syndrome the first treatable brain disorder.

Check out our new Firstgiving Page and click the icon to join our team!!

Every Parent Should See This

Dr. Huda Zoghbi is one of our amazing Rett researchers. She is responsible for finding the gene that causes Rett Syndrome (Mecp2). Dr. Zogbhi is also a member of the RSRT Scientific Board. Last night she discussed "The Developing Brain" on the Charlie Rose Program. I can't stress enough how amazing this discussion was. I encourage every parent (or expectant parent) of a child ages 0 to 7 years (typically functioning or differently abled) to watch this program. Yes, it is 1 hour long but it's so worth it. I have been educated on every one of my kids (all 3, ages 6 and under). This program explains scientifically how our children learn, especially the amazing capacity for learning during these ages, and what, genetically, can go wrong to thwart this progress.

Lokomat Video and Update

As promised here is more video from our Champion on the Lokomat! I just LOVE this thing! We are already seeing so much progress in Annie's walking. She is picking up her feet and bending her knees nicely when she walks at home. She also seems to be getting stronger and has more endurance. In fact, this past weekend before the snow hit, when it was really nice out, Annie and I took a little walk. We did this all summer, we would start in the garage, walk down the driveway to the sidewalk and we would see how far we could get until we had to turn around and head back. Over the summer and into the fall we could go about 2 houses down. Just this past weekend Annie made it 4 houses down and all the way back! I can't believe it with all the time she's been sick and just being cooped up for the winter. This girl amazes me!

Annie had her EGD on Monday. We went in around 1:45 and we were home by about 6pm - not too bad! The procedure itself only lasted about 20 minutes and Annie was "out" for only about an hour or so. Our GI doc took 4 or 5 samples for biopsy and saw mucosal nodules on her duodenum (bumps on her upper intestines) which he thinks may be an allergy of some kind. Problem is Annie is on a gluten free, soy free and very limited dairy diet, in addition her tube feeding formula is specially formulated for children with intolerance's. At any rate we'll see what the biopsy's show (results Wed. or Thurs.). We pray that there is something there that we can correct to give Annie a bit of relief.

Still down

Soooo this is what it looks like in our house these days. Only not only with Annie but Gracie as well. This persistant bug started with James about 3 weeks ago. He had some congestion and maybe ran a low grade fever for 1 night that we left untreated - he's been doing splendid. Gracie was next to get "it" about 2 weeks and a few days ago, she was congested and ran a low grade fever for a couple days that we treated with tylenol once or twice. Sweet Annie was the last to get "it" about a week ago, ran a pretty substantial fever for 5 days treated with tylenol and motrin and cold compresses, congestion that spread to her lungs and had to be started on an antibiotic and has now been out of school for the entire week. What a difference there is in my children and their immune systems! This little bug has also struck for a second time in Gracie (I think more the lingering congestion than an actual second virus) in the form of a double ear infection. Ugggg so this "anti- antibiotic" mom has her 2 girls on antibiotics praying relief is in sight. Mom and dad have had limited sleep these past 3 weeks and apparently it's starting to catch up with us. Pictured is my fearless husband whom I've complained about in the past for not hearing our children when they call in the middle of the night. Can't complain anymore, this man has been running on fumes and last night got approximately 45 minutes of interrupted sleep and still managed to make it for a full day's work. My (sleepy) hero!!

At this point we hope we are on the mend. Next up is a follow up chest check for Annie (to make sure the lungs are clearning). If this is well then we gear up for her EGD which has been rescheduled for Monday at 3pm to hopefully get to the bottom of the GI issues and pain. Then early March is our recheck EKG with the cardiologist to recheck the long QT wqve and a dentist apt. to see about the increased teeth grinding. Then on to the neuro for a possible 24 hour EEG because of suspicious looks we've been routinely seeing when Annie is awakened from her naps. Never a dull moment.

Please keep these little cuties in your prayers that they recover quickly and that Annie's next month comes with answers and brighter days.

Getting to the Bottom of it

Well, I posted last week about Annie's rough go so here's an update. We did an Upper GI on Thursday to try to figure out if there were any ulcers, ridiculous reflux (since we already have it pretty bad we were trying to figure out if it was so bad that the meds weren't even working) or something else. I talked to Annie's GI doc today and he said that the test showed that Annie has a thickening of the stomach lining which is typically caused from an inflammation. Where the inflammation is coming from is the question - Bacteria, Acid, H-pylori are possibilities. Our doc wants Annie to have an EGD (scope) with a biopsy to determine where the inflammation is coming from. We're getting in right away - Monday at 3pm and of course our wonderful GI is taking all the necessary precautions by getting us a great anesthesiologist and doing the procedure in the PICU. Annie should be in and out but we ask that you keep her in your prayers that all goes well with the scope and that they can determine the cause of her pain. Annie is also battling a virus at the moment so we are praying that this little "bug" gets out of her system fast so we don't have to reschedule the EGD. Poor little thing! What a trooper our little Annie is! Napping on the couch

Give a Blessing

Some time ago during one of my "blog surfing" sessions I came across this wonderful site called "Baby Be Blessed"! At this site you can buy beautiful, handmade dolls and lambs with scripture sewn right onto them. Their motto is "Spreading the word of God... one doll at a time". What a wonderful, well, blessing! I was instantly hooked and thought, "who could I buy a doll for" - (When my children were very little I sewed scripture into their favorite security things so they were out) but I soooo wanted to give one of these beautiful dolls to someone. Thankfully my mind settled on a wonderful little boy named Boston.

OK, a little background on Boston:

Boston is the newest addition to a family that I have come to know and admire. Bostons older sister Brooklyn (4) has rett syndrome and I met her mom on line when, ....well, when I was "blog surfing" (OK, I'm realizing I have a problem with spending too much time surfing blogs now that I'm writing all this - I'll add it to my list of things I need to "work on") anyways, I came across the Butlers blog a year or so ago and realized that Brooklyn what just a couple months younger than Annie, they both seemed to have the same infectious smile, they had the same mutation and were diagnosed at just about the same time in their little lives, give or take a few months. Kelly (mother to Brooklyn and Boston) also works for Girl Power 2 Cure so we've talked a bit over the inter net and keep in touch with what our girls are up to. Getting back to Boston...... Well, Boston was born 10 weeks early and went through quite a bit while growing in the NICU. Just before he was ready to be sent home the doctors ran some tests and found out Boston had Down Syndrome. A devastating diagnosis for a family that already had a child with severe needs.

Sooooo, you can imagine why I wanted to get this sweet little guy this wonderful gift. Well, it just so happened that the dolls were on back order (these dolls are quite literally made from scratch and when you see them you'll know why they were on back order - adorable!). I inquired about the dolls to the woman who runs the company (because, if you know me, I just don't take "no" for an answer). I told her Bostons story and she thought he would be a wonderful candidate for "Give a Blessing" . A way that Baby Be Blessed gives back is to help people who are experiencing a difficult time and who better than sweet Boston. Soooo, I am coming to you now and asking if you will check out Boston's story here. Please pray for him and his wonderful family and, if you are in a financial situation to do so please consider a donation. It doesn't have to be big, every little bit helps. Thanks for taking the time to learn about this sweet little guy!

Rough Go

Annie's had a rough time lately. I can't put my finger on it. Things have just been a little different with her. Eating (orally) has been tough, lots of coughing and gagging and very little actual consumption. Drinking has also been a struggle. Sleeping, which has always been an issue, seems to be different as well. Same amount of night wakings but now there aren't as many naps to make up for it durring the day. Annie's been struggling to fall asleep for a nap and once she does she wakes up just a couple minutes later, she looks so tired. She's very restless and has been crying more. Her poor body is being rocked by Rett and as her mom I am reminded again and again of how powerless I am against this horrible disease and all that it has stolen from my baby. Just when I think it can't take anymore it comes and steals again. My heart breaks. Annie's cries bring storm clouds and thunder but I know her smile will return and bring back the sun. I sit and pray for a cure, pray for our researchers and brighter days. At times like this I like to look back at the promising research, like our reversal! And the hope of our cure that is not just from a desperate mother but straight from the scientists themselves, like this interview with Dr. Monica Justice. And then of course plea for money - without funding the research stops and rett wins. If you would like to help unlock Annie and the thousands of girls like her from the grips of rett syndrome please consider donating to research here. Please join me in praying for a cure.

Lokomat

Annie had her first day on the Lokomat today. It took a little while to set up but she got on to the treadmill and walked for 20 minutes today. Annie was a little cranky while she was there, maybe because it was a new thing or maybe just because she was a bit tired but she still did great! Next week we'll be bringing her favorite DVD Boz. I'll bet that will put a smile on her face and make the work not seem as hard! Here's a little video. Sorry, I took it sideways and am not able to straighten it on the computer. Don't worry, there'll be more :)

Making Aliens

James saved up his money for a few months and went to the store to buy a special gift for himself - an alien making kit. Basically it's play-doh and slime with molds. You pour the slime into the play-doh molds, the slime hardens and you've made yourself an alien (must be a 6 year old thing). He's had so much fun with this thing. There are tons of molds to choose from so you can make countless aliens. He's even allowing his sisters to get into the fun. Here he is with Annie allowing her to choose the alien she wants him to make. I just love watching these 2 together!!

Wishes in the Dark

I read this beautiful poem on a friends blog. The author is unknown but somehow I'm certain she is a mother to a rett angel. Her words taken straight from my heart.

WISHES IN THE DARK
Sometimes when she's sleeping
I can see in my mind's eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she's sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she's sleeping
she seems so whole and well
I can't believe she won't awaken
with dreams of which to tell.

Sometimes when she's sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she's sleeping
and my eyes ache with tears unshed,
I pray she'll always be full of peace
as she slumbers in her bed.

Sometimes when she's sleeping
I can almost hear her say
"I love you, Mom, with my heart
and my soul, each and every day".

But always when she's sleeping
I am full of pride'
at the miracle that is my daughter
and the perfection that is inside.

-----author unknown