The last few weeks have been this crazy roller coaster. She's doing better, and then she takes a turn and then back to better. It's hard to keep up myself. So after the big seizure, we thought she was struggling with sleep because she was getting up every morning and wanting to go back to bed within an hour and a half. Then by afternoon, she was screaming a lot and sleepy (which would trigger a seizure if she couldn't get to sleep). But after taking multiple, very short naps, she would be in this fabulous mood by evening. So with her Melatonin raised to 9mgs, we thought if she's still groggy all day then maybe she's having seizures in her sleep. All that said, when we looked at our seizure log, the only time she was having a big seizure is when she was super groggy and couldn't get to sleep. But we stayed up really late one night to see how much she woke up. She had a few turn overs and made a little noise but went back to sleep immediately. Then we had to assume that maybe we're coming at this from the wrong angle. Was it possible that she was doing better and didn't need such a high dose of melatonin and this is what was making her want to go to bed at 9:30am? Well, our best bet was to test it. So last night we gave her 3mgs of melatonin to see how she felt. This morning she is awake and perky, happy and babbling and it's 10:30!!! That to us is a sign of her doing better...needing less melatonin!! She is also screaming less--yay!! Of course, this is just one night, and we require patterns around here, but the reduction seems promising!!
Developmentally, Lily is still feeding herself; in fact, she has now progressed from raking the food and struggling to get it in, to doing a pincer grasp to pick up individual pieces and getting the bites in with ease!!! She's saying dada to daddy and yesterday she turned and looked at me while I was in the kitchen and said mama. She wants to talk!!! Today she is also just more "with us" and we couldn't be happier!!! Since Lily is really focused on speech right now, that is what we are focused on as well. Lots of speech therapy at home with us and the school district will be adding in speech for the school year as well!! Really, what an amazing difference Afinitor has made in our lives! Lily has also lost quite a bit of hair in the back and it is also definitely thinning. I'm not sure if this is the Afinitor or not. She also likes to rub her head on the ground a lot being silly, so that could be contributing as well. We'll ask her neuro Dr in Seattle today. We're excited to see them and most especially Alice~she's one of Lily's best cheerleaders and just calls to check in on her! Lucky us! We'll also be hearing about the MRI results from the Dr, so I'll let you all know if there is any new information. Well, Lily's babbling up a storm right now so I need to go and take it all in!!!
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