Chase Away Rett Syndrome!

Hi Everyone! We have another voting opportunity for you! Girl Power 2 Cure is in the running to share $5.5 Million in Chase Community Giving Campaign. It's easy, all you have to do is head on over to www.girlpower2cure.org/chase read more about the campaign and vote for us. The voting runs from June 15 - July 12 but you only vote ONCE! Don't forget to pass this on to all your facebook friends! This kind of money could be life changing for Annie and the thousands of girls like her! Thank you for all of your support!!!

We're all just people

When Annie had her first seizures, prior to diagnosis I remember how terrified I was, how unprepared and inadequate I felt to be her mom. I remember being in the hospital and asking them if we could please stay, I didn't feel comfortable bringing her home and caring for her. I remember asking Scott to stay home from work, I was so scared to be alone with her, fear that something may happen and I wouldn't know what to do. When Annie was finally diagnosed with Rett Syndrome we had no idea what it was or how in the world we would be able to take care of a medically fragile child with severe special needs. Just the thought of it brought me to my knees with not only grief but shock and a feeling of helplessness. Quickly after diagnosis we visited doctors to try to figure out just how to care for this very special child. We were hit with negative, futile thoughts and suggestions. We quickly retreated to care for our baby, free of the negativity in our very own home. Scott and I empowered ourselves to be Annie's "primary care" and "second opinion". We did have Annie in therapy and we clung to our therapists, we worked hard with them learning all that we could about Annie and how to work with her to help her to keep the skills she had and even start to learn new ones. Thankfully we were blessed with amazing therapists that just loved Annie - many we still work with today and we consider them almost as close as family.

Once complications arose we were forced to start to looking for a specialist to help us with Annie - it was bitter sweet. We did find someone who was positive although they offered little help. When more complications arose we added more specialists and found more of the same - not much help. Over the years we've seen dozens of therapists, specialists, teachers, and professionals. Some have been helpful, others - not so much. Some have been incredibly positive, other's extremely negative. Some have had huge impacts in Annie's life and wellbeing, others have come and gone so quickly we hardly remember. Some have had such a profound understanding of Rett Syndrome and Annie that we clung on their every word, for other's we have been the educators teaching them about our angel. Needless to say for the past few years we have had quite an education from others and have educated ourselves as well by spending countless hours on the internet researching everything there is to know about Rett Syndrome.

We've been going through a lot of changes these past few weeks, Annie's not feeling well again and we are at a loss. She is also moving from preschool to kindergarten and we are getting a lot of new people to work with our little Annie. One thing that I have been learning through this 4 year journey is that we are all just people. We are all just trying to do our best. To think that someone has all the answers because they have a million credentials behind their name is unfair and to think that another has nothing to offer because they are still a student or because they have never worked with a child with Rett Syndrome is also unfair. The only way we are going to get through this though life, the only way we can provide the best for our daughter, educationally, medically and physically, is by forming relationships with the people on our respective teams who love and believe in our daughter. Collaborating, brainstorming, compromising and listening to each other is the only thing that is going to allow Annie to be the healthiest and best Annie she can be. As long as we can find that relationship with the people who help us with our special little girl we will be just fine.

Whiffle Ball Tourney 2010

Today was a wonderful day for a Whiffle Ball Tournament. Maybe a little humid but it was warm, the rain held out and we got to see some amazing old friends!! Scotts fraternity brothers and buddies have been putting together this whiffle ball tournament each year since I can remember. When our Annie got sick and was diagnosed with Rett Syndrome the guys got together and decided to increase the price per team and give all the proceeds to the Rett Syndrome Research Trust - an organization that is close to our hearts because all they do is research for a cure (and they do it VERY effectively, check out the site!)! What an amazing bunch of guys! Scott and I were truely overcome with thankfulness and are humbled every year when the guys get together and show us their support.

The tournament is held in a park in Pleasant Ridge

20 Teams this year - that doubles the amount of teams there were last year!

Of course there were drinks (ahem, maybe too many drinks!)

Our friend Pat flew in for the tournament and had never met Annie before - He fell in love! Can you blame him? She IS pretty sweet!

We brought a picnic

The kids had a blast on the jungle gym at the park!

My sister in law was there with her beautiful kids. This is the newest addition (and my God son!) Matthew. How adorable is he???

Gracie and Emma talkin' stickers!
My brother got together a team the "Annie-mals"!

Of course Scott got together "Annie's A-Team"!

An awesome day with an awesome group of family and friends! Just too blessed! Thank you to everyone who came out to support, got a team together, donated or helped set up the event - we are more grateful then you'll ever know!

MRI

Annie had her MRI today. It was a little nerve wrecking because Annie had to go under anesthesia for the procedure and our girls with Rett Syndrome don't always do so well under anesthetic. Fortunately Annie has always done well but unfortunately we were at Children's Hospital and Annie has never had a procedure there before. Sooo it was very unfamiliar and just unsettling. We came armed with all of our information and our articles about anesthesia and girls with Rett Syndrome and the staff was actually very receptive and grateful for the info. We were at the hospital for registration at 7:30 am and waited until about 10:45 to get into a room. It was a lot of waiting, especially with an anxious little lady who hadn't eaten and drank anything since midnight. Dad did his best to take her mind off things while she waited:

We were able to stay with Annie until she drifted off to sleep with some nitrous oxide and then we had to leave her. They then intubated her for precaution and set up her IV then took her down to the MRI. After the MRI they brought her up to a room where she slept until she woke up from the anesthesia. It was only after she woke up that we were able to see her. Uggg, that was a really tough hour and a half, especially when we are used to being able to be with her while she wakes. Needless to say she was agitated, disoriented and her throat was sore but she came through it like a champ!

We got home at about 1:30pm, gave Annie a little something to eat, snuggled a bit, let her play with her sister and brother, take a nap, dinner, a bath and by evening Annie was up and dancing with her daddy! All better!

We sure have a strong little cookie on our hands! Results by Monday or Tuesday.

Girl Power 2 Cure and Sweet Julianna

This is a video about Julianna a special Rett angel. Her mom and dad are working tirelessly to find a cure for all of our girls! I am so proud to know them and to be part of Girl Power 2 Cure! We can't stand idly by while Rett steals our girls away. We are fighting for their lives! If you'd like to learn more about Rett Syndrome and how you can help please visit www.girlpower2cure.org