Marissa’s Bunny

So, as what likely comes a shock to nobody especially if you’ve followed us on twitter, we’re still waiting. The powers that be have found some more tests so they can feel better about themselves before we get started. Our doctor at this point is seemingly less in total omnipotent charge of the situation and more in charge of attempting to herd all the independent self interested forces at work to one conclusion like a herd of cats. A proverbial stick has been found to keep the treatment window propped open just a little longer, and we’ll see if we have to use it.

Marissa’s back to her unusual sleep pattern again. She’s not sleeping until about 2AM, with a wake for a munchie at 6AM. Yesterday, she slept from 6:15 AM until about 11:30, today, not so much. She’s out here in the living room with me talking to her toys and Mr. Sun coming in the front window showing no signs of fatigue. When I’m done updating here, we’ll move on to her physical therapy homework, and see if that helps with the sleepy issue. It’s too late for me, I’ve got things to do, but if she goes to sleep can somebody catch a nap for me? Thanks.

Her sleep schedule and her cluster schedule are inexorably linked, so nobody’s quite sure how to fix this for a more parent compatible schedule. Her medicines keep clusters at bay while she’s awake, but without fail if she’s asleep more than 2 h0urs, she’ll have a cluster when she wakes and the severity of same depends the concentration of her meds in her little body. We’ve seen a small bit of improvement with her drops by going to three klonopin pills a day, but she’s still having them. Development is going about as fast as you’d expect for Marissa, meaning excruciatingly slowly, but every once in a while we see a spark of something- a little extra focus on a toy, a purposeful lunge, intentional loud yells in context. Purposeful stimulus response is the fuel that keeps us going. It’s not that we’d ever stop trying to help, but any help is good help.

NATO Fairfax at Wembley

Hey, look at that! NATO Fairfax finally decided to let me know how things were going. Busy guy, that Fairfax.