Medical Catch Up

Since I haven't posted a lot lately, I wanted to give a general medical update on how Lily is doing. Her seizures are better controlled with the Trileptal and we're down to 0-2 a day. Mostly it's 0-1, but every now and then she'll have two. They are about 5 seconds long, and she pops right back up afterward. This is really good seizure control for Lily, so we're very pleased. Developmentally she has started sticking her tongue out at me when I do it to her. This is our first real step at mimicking. A huge deal!!! Once you learn to mimic, it helps you to do so many things. She is also really motivated to get to certain toys. She has learned to play with a toy on her tummy or on her hands and knees. I can tell that she tires quickly in quadruped, but even if she does it for a few minutes, it helps her gain more and more strength. She is saying dada more often, and I'm addressed as mmmm. She is doing really well with school and gets so excited when she knows Ms. Sharon is coming! She's getting better at using the iPad as well. I have been focusing a lot on making the choice between a drink and a bite, and she has progressed to touching drink, and then she'll hold out her hand for you to give her the cup--she obviously has learned what she's asking for!! An amazing advancement that I believe would not be possible without Afinitor. She started a prophylactic antibiotic and has not had a UTI in some time. Also, we are headed on Tuesday to Seattle Children's to see an opthamologist to check her vision, nystagmus, and to ensure that she does not have any tumors in her eyes. She hasn't been ill in some time either; we've tried to somewhat keep her away from crowds and kids to let her immune system catch up, and we also added in a probiotic that was recommended by her neurology nurse since there is some research showing that it improves immune systems in people on oral chemo. So, health-wise she's doing really well, and we're hopeful that we can keep this reprieve going!!!