A Call from the Neurologist

Well, to start off with, Kendall's seizures have been particularly nasty this weekend. They are way more frequent than they have been. That said, we are definitely wanting to try something new. The Neurologist was waiting for the Hematologist appointment to decide the next step. Late Friday afternoon, he called to give me his plan...sort of. He said if I "can be patient" this Wednesday he is meeting with his team, including the Neurosurgeons to present Kendall's case. He said he has reviewed it in detail and thinks she may be a candidate to have that part of her brain removed. I know there is a term for it, I've read it on other's blogs, etc.. like recession or hemispherectomy or something like that. Anyway, he's concerned the Factor V could cause another stroke, so he's going to talk with his team to determine the plan. I'm a little nervous about this. Shouldn't they try some other medicine before deciding to cut into her?? I'm sure all those questions will soon be answered if I can just "be patient."

Despite the seizures, Kendall has been very smiley this weekend and in great spirits. She enjoyed a visit from her Aunt Kristin on Saturday:

And we were finally able to get a family picture:

Kendall pants loves being outside. Now that the weather is starting to get warmer, I'm excited to enjoy the outside with her. ECI is ordering her a bath chair that they say we can also put on the top step of our pool! I'm sure that sounds pretty simple, but to us it's huge! I'm finally starting to feel like we can do some "normal" things with her. Even being able to push her around in the jogger, or her entertaining herself somewhat in her bouncy chair is a huge accomplishment. For us, its a big deal to not have to hold her every time she's awake! This morning she actually found her pacifier in her lap and put it in her mouth! It took her a while...but she did it! Of course, I was cheering, then she smiled and dropped it again! Oh well, baby steps!