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 could use OT every day but that would get rather expensive , so we also work with her at home as much as we can. With Rett, if you don't use a skill (you still have), you lose it, so it's CRITICAL that she has her therapies each week, professionally and at home. The appt was at 9, so she was able to "sleep in" a bit. She's usually a little (a lot) cranky in the AM (I don't blame her), but today she was pretty happy. I turned on the Yo Gabba Pandora station on my phone on the way, and when she heard Brobee start singing, she erupted with smiles and laughter. I danced to the Peanut Butter Jelly song and she laughed even harder.
I cherish those moments with her when she's really "with me". Our OT eval lasted 2 hours--More paperwork, more assessment, more hearing where she ranks according to the "average". This use to bother me more, but I don't let it as much. I know she's capable of more cognitively and I know what she's battling. I am real careful what I say in these evals too, because Blake is in there and she hears and understands. I try to build her up even as I tell the new therapist what she can or cannot do. It was exhausting for us both, and more for her than I realized.
I took her over to her classroom to eat lunch with her friends/teachers while I ran over to another part of Vandy to see a friend. I got back in time to observe her in her class. She was a bit fussy, and then it turned into an all out screaming fit. These happen, but are more rare lately. I went in, tried to calm her, but none of my tricks worked. She screamed and cried, all the way down the elevators, and as we waited for our car...amongst a lot of people.
I just held her and hugged her--we finally got our car and within minutes she was OUT. She was just exhausted and couldn't tell me. *sigh*
When she woke up, I told her about Gaby, who has Rett and types. I got out my laptop and she enjoyed hitting at the keys. Maybe one day...
We also played outside for a bit. When she stares at the ball like that I KNOW she's thinking, "kick it!" Maybe one day...Daddy was a welcomed site this evening. After dinner he worked with her on weight-bearing on her arms and standing from her chair. Andi offered her support in the form of a kiss . Sorry so long today! (I'm currently in Kroger parking lot because that quick grocery trip I planned was thwarted by the meltdown )