This is what Gracie asks to listen to at bedtime.
Traveler.
The day after we came home from the beach Gracie came down the stairs, dressed up, carrying her sister's suitcase. Her toy bag was packed and waiting for her!
She completely dressed herself- skirt -top- stockings- leggings over the stockings and dress shoes; one of each from her best pairs.
But the show stopping piece was her choice to use footless stockings has a shrug!! Very trend-forward!!
Chris and I were very impressed as she strutted down the stairs!
Inside Out
We went to see Inside Out yesterday. It was a cute but extremely sad (for us) movie. Because, like the movie's heroine, Riley, we are experiencing a life changing challenge: moving. Not us, personally , but one if Joy's BF's is. And it's just like a family member is moving. But that's not why I have the movie's other heroine, JOY, up there. The movie shows Riley's emotions as little people that help her get through life- running a control panel in her brain. 
Joy's co-workers, if you will, are these guys up here. Sadness, Anger, Disgust, and Fear.
Anyway, it got me wondering who is up there controlling Gracie's brain?!?
Vacation interrupted
These pictures were taken last week while we were on a walk on vacation. Gracie stopped almost in the middle of the road because there was a fan on a porch. A ceiling fan. On a porch. While there was a truck waiting for us to cross.
It's times like this I wish I knew what was going on in her brain. We had to interrupt our vacation so we could take Grace for an EEG today. It was good in a way because Joy got so spend a last few days with her friend Shelby, who sadly is moving away. this is Shelby and I'm sad too that she is moving. She's a good kid, albeit a little crazy! We will miss her.
But it wasn't a good thing for Gracie. We had to keep her up till 11:30 last night and get her up at 5 today to take her to the hospital to try to get her to go to sleep while they put nodes or something on her head. Get Gracie to sleep or be calm in a hospital??
HahahahahahahahHahahahaHAHAHA- it's real!!
I knew it wouldn't work. Chris knew it wouldn't work but they won't give an order for a sedated test unless it's found that they can't get the info needed otherwise. ( should I laugh again?)
SHE's AUTISTIC!!!!!!! Of course she is not going to sit still. She's also extremely afraid of hospital/ doctor settings. So you figure it out.
So we spent two hours there - she actually did doze but not enough for them to do anything. So we went home and had to go about setting up another EEG THIS TIME WITH SEDATION!
And now we probably have to change her neuro visit.
Sometimes I feel like I'm stuck running in place-
There's a Casting Crowns song that begins:
"She is running, a hundred miles an hour...in the wrong direction"
That's me.
So now vacation is resumed. But not for me tonight.
Scare
Thought the ups outweighed the down til last nite. I went to put Grave to bed as usual and everything was fine right before I put her to bed. She just laid down on the floor and couldn't seem to move. I called her and told her to get in bed but she just laid there. Rachelle's voice in my head told me to video it and I guess it's good I did. She eventually lifted her arms to me to lift her up and I put her in bed- she sat up( which she never does) and kind of rolled her eyes till she started just blinking and nodded off sitting up ( which she never does)
Chris was at a meeting so I sent the video to everybody. Rachelle told me to call the oncall triage center who told me to take her to the ER. So now she's asleep normally and I have to get her up which means it will take her forever to get back to sleep. Anyway she was really good at the ER but I had to work to keep her calm. No one but he therapists realizes just what that takes. I had to get her favorite video games - I had to hold her down- I had to play her music box music all in effort to keep her still because she was hooked up to a heart monitor. She normally paces in dr's offices. So now she couldn't even pace.
Th Dr eventually said it COULD have been a seizure but didn't fit all the criteria-he didn't feel the need to put her through tests at the time which I sort of was grateful for but now we still don't know anything.
So we went home and Chris gave her more melatonin and put her to bed. Melatonin only works ONCE a nite w/ Grace so I knew I would have to stay up with her till she was close to sleep anyway. That was not till after 11:30. She was back to herself today because the house looked like a hurricane went through it.
I just write these things down as a document to myself so someday maybe she can talk to me about them. That's my hope anyway.
Now we can't get to the good neurologist till October- and so a new chapter begins.
More ups and downs
UPS- lunch in the cafeteria like a big girl AND ate a new food - peaches!!
Downs- visits to the Dr in Trexlertown!! Twice in one week. Her behaviors have been off lately and it didn't seem to be the usual belly pain.
Ups- she actually pointed to her throat to tell me she had a hurt!!
Downs- 1st time to the doc,I thought it might be the strep AGAIN! Called for another visit and I was thinking the dr thought I was crazy. I don't think she did actually because she kindly prescribed another antibiotic for her that was more for sinus infections, which I think she has. But I felt like she did, if that makes any sense. It was just one of those days that everything seems to drag you down.
Ups- she has been trying to vocalize clearly.
Ups-
We came home from a cleaning weekend at the beach. I hadn't yet put her suitcase away but I knew it was upstairs. Then I saw her take her box of gears and walk off. I wondered where she was going to dump it because that is what she does. Then I went in the kitchen and found her suitcase and her toy bag where I normally put the bags before I pack up the car!!!! I asked her where she was going and she said "beach house" pretty clearly!!!!!!!!
Ups- today she tried Popsicles at school. That's a pretty big deal because she really doesn't like cold things. So I guess today the ups win.
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