Day 51.5: Stubborn Emmy

I guess we all get "a case of the Mondays"... including Emerson.  Emmy has, for the most part, figured out how to resist doing what her therapists want her to do, and figured out ways to "work the system" so she can do what she wants.  At least it shows some cognitive ability that she has figured this out, I guess.

So here is what Emmy's day has been like so far:

She slept through the night from about 8:30 p.m. until 6:30 a.m.  We washed up, got into our first outfit (yes, first... a little bit of foreshadowing here people) and turned off the feeds for a bit.  Then Mommy sat and read Emmy some books, but she was not interested in books; she was interested, as usual, in scratching her face, pulling out the bow in her hair, pulling out the tube in her nose, and rubbing her eyes.  Despite the immobilizers (or "no-nose") she was determined to ignore books and squirm around until she could scratch at something, so she finally ended up back in bed.  Emerson's first appointment was with Elizabeth for speech.  Mommy and Daddy love Elizabeth, but Emmy has learned to look away from her pretty much immediately.  After 10 minutes of coaxing her, Emerson finally took her pacifier for two minutes.  Following that, we tried putting pears on the pacifier and on her lips, but Emerson just looked away.  She would not smack her lips to take the pears and even resisted us putting a little in her mouth for her.  She refused to taste today.

After speech, Emerson had PT.  Emmy has figured out that she gets "breaks" when she gets too tired and that means she can lean back on Haley, her Physical Therapist.  So what does Emmy do now?  She leans back whenever she feels like it.  Instead of sitting up until she is too tired to keep that large head up anymore, she will just decide she is done and kinda throw herself back onto Haley.  So the stubbornness continued.

Then Emerson had speech again.  We tried sweet potatoes this time because Emerson did a great job with those last week. She resisted EVERY trick Elizabeth had, though, and even kicked her away pretty much the entire time she was working with her.  It was pretty funny to watch, actually, and Elizabeth was laughing.  Emerson doesn't cry, or start breathing heavily or choke or anything when she is getting her speech therapy, but she turns her head and purses her lips, and grinds her teeth so that you absolutely cannot accomplish anything.  She even started swinging her immobilized arms around at Elizabeth.

Emerson had PT again after that second round of speech and was up on a big red ball.  The first time around at this- probably because it was new- she did a great job at keeping her head up and looking at herself in the mirror.  Then she got a break, and the second time around, she figured out that she could rub her face on her towel on top of the ball to scratch it, so she was no longer interested in holding her head up at all; in fact, she wanted to do just the opposite and just face plant onto the towel on the ball and rub her face in it all day.

She was tired after this round of PT, so Emmy took a nap on Mommy until OT came in for an appointment that we forgot about.  We turned off her feeds, cleared the tube with water, went to the therapy room and sat her up to play.  Well... as you can imagine, this was a bit much right after waking up, so she immediately threw up everything in her stomach.  We got through some sitting up in there and trying to balance on the hands.  Then, we got Emmy changed and had our third round of speech for the day.  Nothing to report there.  It was exactly the same as the other sessions.  She was totally stubborn, kicking Elizabeth, turning her head etc.

Emerson has one more round of OT at 3:30 and as we speak she is rubbing her head with her immobilized arm and kicking in her bed and just generally squirming around.  I literally JUST gave her her rattle because she was shaking her hand like she wanted it, and now she is beating her monkey Nigel with it.  I think she is in a bad mood today.  She is just mad at the world, and I can't say that I blame her. Maybe she will be more agreeable tomorrow.  We all have our bad days.