it's over! we did it! we had a busy weekend with Avery's study appt on Saturday and the Strollathon on Sunday! (Saturday was Nolan's 2nd birthday - we will celebrate that on the 10th)
I was really looking forward to Avery's study appt with Dr. Skinner and the team. Avery was enrolled in the study as soon as we got our diagnosis and our first visit was back in March. I met several families that weekend but it was all so new. Such a surreal experience. This time it was so different. So comfortable. So many faces I recognized from prior meetings and even from facebook. We ran into the Layton's, whom we had met in March and we feel so close to now. Leah and Avery had fun taking turns eating fruit and being silly. It was strange to sit with Maren and think we have only know each other for 6 months? And we have gone to Vegas already? wow.
So, we take Avery back to be weighed and measured first. And by measured I mean MEASURED. Not just her height but her bones! She hates this part. lots of screaming and kicking. I was surprised to find out she had grown about 2 inches but didnt gain much weight so her BMI had dropped a little. It is just over 14%. Once girls with Rett go below 13%, alternative feeding methods are discussed. So Im thinking of trying dairy with Avery again. We took her off b/c she was getting eczema. So i gave her yogurt tonight and we will see. Next we got to see Dr. Skinner who is a geneticist from SC. He is fantastic. So sweet with our girls. And just a great man, so smart but still able to relate to parents. we invited another mom (who was visiting from St Louis and planning to open a Rett clinic there) in to our appt with us. A woman I had JUST met. But that's what this family is like. Instant connection. We also got to meet with an orthopedic surgeon from Alabama. He told us that Avery had great muscle tone and that we didnt really need the inserts in her shoes. He loved the way her feet looked and was not concerned about her minor pronation. So we might try to take them out and see what happens. Then we got to go talk to Judy the communication specialist! She offered Avery a chance to use an eye gaze computer but unfortunately Avery was ready to leave. She was done. And I dont blame her. But I got lots of great ideas and feedback from Judy. More on that later! So we left. And as we were leaving we saw all of our favorite people-but off we went. We knew we would see them all the next day-at the much anticipated STROLLATHON!
that little goose at the Study
We showed up to set up with a packed car-I literally had tables millimeters from my head. the weather was WEIRD. clouds and sun and wind and sun again. but we made it.
we didnt know what to expect. we had 140 or so registered online. and we had 360 people! that count included children and babies, but STILL! 360? Wow! I counted 18 girls and women with Rett. Amazing.
im so thankful for all the help we had from some wonderful rett parents and siblings. we had incredible volunteers and committee members. we just couldnt have done any of it without each and every person we had. we had tons of food and drink and awesome faeries who face painted, music, fun crafts and temporary tattoos!
As 2pm approached I knew it was time for me to say a few words. this is not my favorite thing to do. i honestly would feel more comfortable getting a root canal than speak in public. so butterflies were making their way around my tummy. but I had to go. so up on the stairs i went and looked out to so many people all looking up at me. as luck would have it-we had no microphone and it was windy so Im certain only about 7 people heard what I said. that made it easier. and i didnt cry. i dont remember what I said as it was not at all what I had prepared but I did it without my voice even wavering. Im really proud of myself for that. I made Paige and Red stand up there with me. Im such a chicken.
Then we took some pictures and got ready to Stroll. I almost lost it at that point. Seeing all the friends and family that had come and and were wearing our team little goose hats (in orange and black for our Giants!) really blew me away. they were all standing with us in our fight. with us. it was too much. but i pulled myself together and walked. and we talked and laughed and met people and introduced friends to family and vice versa.
Our stroll was a "down and back" style stroll so when we made the turn we were walking back the way we started and the rest of the group was still coming...high fives...smiles....waves. so much love. and the sun had come out.
team little goose was nearly 50 adults strong. We had 8 people with fundraising pages and as of today the team as a whole has raised $16,293.89. Another team, Avery's Fan Club raised $5475.00. thats a ton of money. it gets us much much closer to a cure.
team little goose. pure love.
*pictures by Debbie Lee*
for more pics, go here: