Emery did so well through the holidays. She was her normal happy little self. It was so nice to see her enjoying the festivities and daily life after her salicylate reaction was overcome.
Sadly, Emery began having issues unrelated (we think) to salicylates. Beginning the week of December 30th, Emery began acting not quite like herself. A few unexpected tears here and there, but nothing alarming. After Christmas break was over the week of January 6th, our life started to return back to normal. The kids went back to school on the 8th and Emery started school at Horizons on the 9th. She was all out of sorts during this week and we really had no idea why. She continued to get worse. Many tears and continuously hitting herself with her fists. Trust me, this little girl can throw a punch. I accidentally got between her head and her fist and took a hit on the side of my head. Wow. A lot of power for 54 pounds!
By last Friday, she had taken a turn for the worse. She would sit and rock in her chair and would not get up. Not even to eat. She wouldn't play on the ipad or with any of her favorite gadgets. She would make us keep her hands covered with her weighted blanket so she wouldn't hit herself. When we got her out of her chair to use the bathroom, eat, or run an errand, she would tear up and make us hold her hands so she couldn't hit herself. It was heart breaking. It was like she couldn't stop herself from hitting but wanted so badly not to hit. We had to hold her hands with one hand and feed her with the other. She would not let go of our hands even to feed herself.
Her therapist believes she is going through a rough time because of her transition to a new school. She is very familiar with Horizons, but she loved going to St. Anthony's. I know she probably doesn't understand why her siblings are still going to St. Anthony's but she is not. So it is quite possible that the transition is more than she can handle.
Another thought we had was that her LENS treatments were causing her issues. She went two weeks over the holidays without any treatments and she was fine. She received a treatment on December 30th and then again on January 9th and she just hasn't been the same since. Her therapist has since adjusted her treatment, but we haven't seen much of a change.
I thought maybe she was sick or not feeling well. But, she has no fever, she is sleeping fine, and she will eat as long as we feed her. So I don't think there is anything medically wrong with her.
She is doing a little bit better today. She is actually in her chair holding some plastic spoons in her hands and not hitting herself. She went to school this morning and was in a good mood and seemed to enjoy her time there. She still insisted on having her hands held so she wouldn't hit herself. She had another LENS treatment as well today. She was a little giggly on the way home, so I am hoping she continues to improve.
I so miss my happy little Emery. Praying God helps her through this soon.