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!