Today is Blake's D-Day. That's what the Rett community calls it, "D-day" or Diagnosis Day. It's been 1 year.... On 7.7.14 our world was rocked, and our hopes and dreams for Blake's recovery were seemingly obliterated. I didn't sleep well the weeks and months following- I went to bed most nights not wanting to wake up. I was thanking God for answers, but begging Him to make it all go away. We slipped into a grieving period (me, Ben, our families...). Trying to make sense
Day 6 of "A Week In the Life Of Blake" Saturdays are the best kind of days. They are also chocolate chip pumpkin pancake days! (GFCF of course, and Blake has her own chocolate chips that are diet approved) Both of our girls can put away some pancakes. We started pancake morning tradition when we were first married and we've never stopped! We wake up talking about them and getting the girls excited about them... and they fuss and fuss until they are ready. They linger in the k
Day 5 of "A Week In The Life Of Blake" - Fridays are usually off days for us, but today we had a very exciting day, that involved therapy, but didn't feel like work--and it was in large part thanks to the generous support we've received from you guys!
Today, Blake had her first Hippo (horse) therapy appointment! She LOVED it! (I had to wake her up, and found her asleep on her tummy. I'm thankful that she still has enough mobility and coordination to turn herself over. It ma
Day 4 of "A Week In The Life Of Blake"- Thursday is the last of Bs 3-day school week. A quick note about her school, we love it because it's currently a 3 teacher to 4 kid ratio, which is pretty amazing because B gets a lot of one on one attention and help. It's led by a Speech Language Therapist (with OT support) so there is a strong emphasis on communication. Girls with Rett are noted for their ability to communicate through their eyes. Because her motor skills are so affec
Day 3 of "A Week In The Life of Blake"- Wednesdays are school days- She's in a program at Vandy which is about a 50 min-1hr commute from our house in morning traffic. We try to let her sleep as long as possible. I get her breakfast ready with all her supplements, while Ben gets her up. Picture 2 is everything that goes in or on Blake throughout the day--Breakfast, Lunch, Dinner and in between. Her body has nutritional deficiencies that we compensate for via supplements, prote
Day 2 of "A Week In The Life of Blake"- It was just one of those days today. It started out with a memorable moment for me though, so it's like most things with Blake, you have to take (and savor) the good with the bad. Usually, Tuesday-Thursday are school days for Blake through a preschool program at Vanderbilt, but this Tuesday we had an Occupational Therapy evaluation at Vandy instead. We are picking up a second OT session after school one day while she's there. She really