Monday, April 9, 2012
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 : )
Thursday, April 5, 2012
Thursday, March 22, 2012
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 : )
Thursday, February 16, 2012
"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!
Thursday, February 9, 2012
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!!
Sunday, January 1, 2012
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!