Easter at the Cape

We had a great Easter on the Cape this weekend. So relaxing and nice there this time of year. We decorated eggs and did an easter egg hunt around the living room. We attempted doing an egg hunt at the Mashpee Commons but it turned into mayhem with way more people there than expected and was described by one parent as a "complete bloodbath", so we shifted gears and did a home hunt instead. Meredith was so funny discovering her Easter basket in the morning - she couldn't stop laughing. How many times can two people say "easter basket" in 54 seconds? You are about to find out! Spoiler alert - my mommy voice is at it again (do I really sound like that???) and we all just woke up so we get a pass on hair and wardrobe : )

School pictures

Easter Egg Hunt

We don't know how she managed to do it, but somehow Meredith SMOKED her competition in the Easter Egg Hunt at school by finding 10 eggs and scoring 50 points!

Pancakes in the Park

This is the face of a girl who just had her favorite menu item: pancakes with strawberries and whipped cream.... outside at the park! 82 degrees in March makes for a beautiful day for a walking field trip to the Commons. Mer has been doing really well. Seizures have been pretty well controlled; she still has breakthroughs every 10 days or so, but most have just been single seizures. Thanks to a Melatonin increase, her sleeping has been beautiful and we are all enjoying that little perk! Her gross and fine motor have been status quo for quite some time and the emphasis has really shifted to communication. We now own several switches which we connect to the computer or toys to help teach cause and effect. Meredith doesn't have purposeful use of her hands so she seems to prefer when we mount the switch by her head. Then she uses her head to tap the switch. At times, it appears deliberate, but it's still hard to tell. So we practice, practice, practice with the hope that we'll develop a platform from which to build. It's a long and very slow process, but we are used to abandoning timelines with our little Snarfy, we just keep at it. Mer pretty consistently responds to my and Greg's voices with smiles and eye contact and that definitely keeps us going regardless of what other progress is being made : )

2012... A paradigm-shifting year

"2012 - A paradigm-shifting year....." I like the sounds of that! Below is a great article where two Rett moms (one being the Executive Director of Rett Syndrome Research Trust UK) discuss the science, the reversal, and all the reasons we have reason to be hopeful. In plain English to boot!

http://reverserett.wordpress.com/2012/02/15/up-the-garden-path-a-short-conversation-about-rett-research-treatment-and-the-validity-of-hope/

Certificate of Achievement

Meredith has been super alert and attentive lately and showing improved eye contact and focus. We were thrilled when school noticed too. She came home with this fancy award last week...

Go Pats!

The good news is the Patriots made the Superbowl again this year! That's about the end of the good news as far as the Pats go. But Meredith did look mighty cute in her Tom Brady T!

Disney World!

I have fallen behind on my blogging recently! January was a busy month for us but one of our highlights was taking Meredith to Disney World! We stayed with Greg's Grandmother who has a place right near the park. Meredith was a star traveler, had no seizures and she was extra happy and vocal the whole trip - yay!! Upon entering the park, Meredith got her "first visit" pin and we were off to the races. We did a character breakfast where several characters came around to the tables to greet the children. It was very much our speed and Mer got to add some new signatures to her autograph book. The characters were all very sweet and attentive with her. She took a real liking to Mickey Mouse and while we were there whenever we said "mickey mouse", she would smile. The whole park is super handicap-friendly and we were able to wheel her right on several rides. We took her on "It's a Small World" and her favorite, "Carousel of Progress". She also saw the 3D Captian Eo show. She watched everything and really took in all the sights and music. We walked around a lot and hit my favorite part, Around the World at Epcot. She definitely knew she was somewhere special. We got in some great quality time with Gody who was an amazing host and also a huge help with Meredith. Thank you Gody for a great memory!!

First Family Movie

We hit the theater today to see our first movie as a family - The Muppets! It was awesome and Meredith loved it. She dozed here and there, but when she was awake was really interested in watching - so much fun.

A Happy Happy New Year

Meredith's gait trainer just arrived and she test drove it for the first time this morning. She took to it instantly! She didn't go very far, but she did move a little bit and was trying to take "steps." It was so inspiring to see her trying so hard and really trying to move her legs in the walking motion. It was amazing. We think this is going to be a great mobility option for her. Yay - Mer's world just got a little bigger! If you look closely, you can also see Meredith's manicure, courtesy of Santa's Hello Kitty nail polish!! Yesterday the three of us got to meet her new baby cousin John - congratulations Auntie Beth and Uncle Paul. And now this.... a great start to 2012!

Richie Hebner!

Today at school Meredith got to meet Richie Hebner. He was a third baseman for the Pirates. He is the father of the teacher in Meredith's inclusion class. If you look closely at the picture, you can she she got to try on his shiny '94 Toronto Blue Jays World Series Championship ring!!

Polar Express!

Today we went on a Polar Express train ride to the North Pole! Which, in case you did not know, has relocated to the Readville train station : ) The event benefited Saint Catherine of Siena School and was organized by a mom we met recently at a couple Rett Syndrome functions, Paula Curly - an awesome mom who does so much for Rett Sydrome and is just an inspiration. One plus of an event organized by a Rett mommy is that they had a special needs friendly car. We left Norwood Central at 12:30 and went on a 50 minute train ride where the conductor read the Polar Express book to all the kids and we got to see Santa's elves. Meredith was given a bell, candy cane and cookie and she tried hot chocolate for the first time. We saw frosty the snowman and then Santa himself made an appearance. It was a lot of fun and we got to see a few of the new friends we have made in the Rett community. A great way to end our long Thanksgiving weekend and kickoff the holiday season!

Wonder Woman at last!

Last year Meredith was in the hospital over Halloween so she never got to be Wonder Woman as planned. So it's been a long time a coming, but at last Wonder Woman made her appearance this Halloween.

Rett research moving forward

More great stuff happening with Rett research.

http://www.uab.edu/news/latest/item/1850-uab-researchers-seek-to-reverse-rett-syndrome-in-children

Boston Marathon 2012 - Support Team Rett!

I will be running the upcoming Boston Marathon to raise money and awareness for Rett Syndrome. Here is the link to my fundraising page where you can see a short video that tells Meredith's story and allows you the opportunity to donate if you wish. Thank you so much!!

http://www.crowdrise.com/meredithlewis

Thank you Steve Jobs

As a long-time Apple fan, I instantly fell in love with the ipad as a toy that allowed me to cruise around online, read and play games. I had no idea when I first got it how beneficial it could potentially be for Meredith. We are beginning to explore various apps that hopefully will one day help Meredith communicate. Therapists are finding this to be an amazing tool for tapping into the minds of non-verbal kids. We are starting with very simple concepts - when she touches the screen, something happens. Here is an interesting 60 Minutes segment that shows how it works. I love the bit about the little boy who they discovered loved opera. Who knew!? These kids have ideas and thoughts and feelings in there - it's just a matter of getting them out.

Inclusion Gym Class

Today school sent home a few pictures from Inclusion Gym Class. MerBear made Dad proud today as she played soccer for the first time! There are a few little girls in the class that know how much Meredith likes things that sparkle or shine. So on the days they know they will see her, they wear shirts with sparkles. I thought that was just about the cutest thing ever. Here's a pic of Mer with one of her buddies and with her gym teacher.

Blue Sky Event

Today we attended our first official Rett Syndrome Event - the Blue Sky Event at Harvard Medical in Boston. Greg is in China for work but Meredith and I went and we brought Grandma too! It was a great day and we had the opportunity to meet many other Massachusetts Rett families. Dr. Khwaja was there as well as several of the researchers working on finding a cure. Each of the children climbed the stairs to symbolize their strength and perseverance. After the kids climbed, Dr. Khwaja and the researchers climbed too. It was an amazing day. The second picture is Meredith and I with my marathon buddy Jeanne and her beautiful daughter Charlotte.

Rett on The View

Again - this is Typical Rett (not Variant), but great exposure for Rett Syndrome in general. Meredith's kind of Rett is distinguished from this kind because she never had the period of normal development these parents describe and her mutation is to the FOXG1 gene, not MECP2.

Rett Syndrome on The View - January 2011 from RSRT on Vimeo.

Great Video that explains the Rett Reversal in Mice

Kind of sciency, but if you are interested in hearing someone who knows what they are talking about explain the experiment, here it is! This explains the very exciting experiment that was done where Dr. Bird was able to reverse the sypmtoms of Rett Syndrome in mice. MECP2 is the gene linked to Typical Rett. But this science is still exciting for kids with a FOXG1 mutation (Atypical Rett) because the findings indicate that a similar approach could be taken with the FOXG1 gene.

Understanding the Rett Syndrome Reversal Experiment from RSRT on Vimeo.