Right now we're waiting to hear from the neurologist about whether he wants to start Alex back up on the Sirolimus for his SEGA, or whether we're just going to have to have it surgically removed. Due to Alex's self injurious behaviors, he just isn't a very good candidate for taking an immunosuppressant. He's often got open wounds that take forever to heal, which then tend to lead to infection. His neurologist is afraid he'll end up catching something really nasty. We saw great results at first, with the SEGA shrinking...but since then, it's pretty much remained stable, even after going up on his dosage. Given that fact, and that he's more prone to infections, the neurologist is kind of leaning towards just doing surgery. He said he'd consult with the neurooncologist and neurosurgeon to see what they thought regarding risk vs benefits of surgery or staying on the drug. We're really not wanting to do brain surgery (for obvious reasons), but we also don't want to see Alex keep getting nasty infections.
Ben seems to be doing well in 3rd grade. He has a new best friend, Robert, and was just invited to his birthday party. They will start off at the house, then go bowling, then go back to the house for cake and ice cream. Do people really just drop their kid off with a strange family they've never met, and let that family drive their kid all over town? I'm going to call and see if we can meet them beforehand. Ben really really wants to go.
Claire is one! Hooray! She's walking all over the place now, getting more and more confident about it every day. She absolutely loves dogs. She gets so excited when she sees one (alive or even a stuffed animal), and will start barking at it. She also is a fan of birds (she tweets) and cats (she meows). She is starting to get a little temper when things don't go her way.
I think my time is almost up. Here are some recent pictures....
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