First, I wanted to update you on Emily.
She is adjusting to her med increase very well so far. She almost seems like her old self again. I am afraid to say that because she does like to prove me wrong. She did wake up with a hot, red foot this morning (the left one again). That is the first time we have seen it since a week ago Friday. It was gone within an hour. The doctors kept asking me if it hurt her and I wasn't sure the answer. Well, this morning I was touching and squeezing her foot and she did not react at all. So I guess that answers that. I also am more and more convinced that this has nothing to do with strawberries. I think the strawberries were just a coincidence for what was already going on in Emily's body.
She has not had any more seizures (YAY!).
Last night, when I gave her a bath, she did not have a meltdown for the first time in a while. Of course, I kind of tricked her, but a parent has to do what they have to do. I picked her up out of the bath before shutting off the water. So she didn't have her usual trigger for her crying fit. It went very well. It was nice to have a stress free bath.
Second, I want to share some great news that we received last week. Don't want you all to think that we had nothing but stress, craziness and crying around here.
Emily had an appointment with the eye doctor on Friday. For the last four months, I was supposed to be patching Emily's right eye for 2-3 hours a day. Notice, that I said "supposed to be patching"? Well, I have not done it very consistently at all. Her schedule is a little hectic so I struggled to find a time to do it regularly. I fully expected the doctor to give me a stern lecture about it. It was quite the opposite. He said Emily's eyes have improved greatly and I did not need to continue with patching. He was very pleased with how everything looked. I left there so happy. It was great to receive some good news (also nice to know that I didn't have to feel guilty about being a slacker with the patch).
The other piece of good news came from the therapy program at Children's. They have been using a communication device with Emily since the day she started. She doesn't get to use it every time, but gets to take turns with another boy in her class. She has been making fantastic progress with the device. A couple of weeks ago, the OT told me that Emily was doing great during circle time. She was very purposeful and using the device appropriately. They were reading a story and the teacher would go around the circle to let each child see the page that they were on. Emily kept selecting the "I want to see" or "I want a turn" icon (she does this with eye gaze). The teacher would tell her that it wasn't her turn yet. Emily would giggle and then select the icon again. I always knew her nosiness would pay off!
This past week, the OT said that Emily was doing a great job with the device during circle time again. Normally they will display a page of icons that relate to what they are doing and Emily has to pick one (I believe they give her 4 options). Well, this past week, she was switching between pages on her own and selecting the appropriate icons. The OT would tell her to go to the pink page that related to the story and select something in particular. And Emily did exactly what she asked. The OT was thrilled that she was doing so well (and so was I!). The speech therapist had similar things to say about her the second day she was there last week.
So, it has been decided that Emily is going to be put on a list to get her own communication device. This process can take a while, so I am trying not to get overly excited about it. I am just thrilled that she is learning this skill and finding ways to communicate in her own way. I think Emily has a lot to say and we might as well feed that desire by getting her the tools that she needs.