Pre-update update

Well, I've been waiting for some sort of significant update before writing another post, but that doesn't seem to be happening any time soon. But life goes on even when insurance companies are SLOW. We head to Chicago Monday through Wednesday of this coming week. We were able to combine two different appointments into one trip, so that is good. On Monday afternoon Micah will have another two hours of developmental testing to get a baseline before possible surgery.

We did this same thing several weeks ago, but they need to do some additional things because he's kind of falling between two tests developmentally and age-wise. They'll patch some parts from both together. It was frustrating that they didn't get what they needed that first day, and it's always exhausting to have Micah do these kinds of tests. It's hard as a parent to be part of a situation where the person working with my child is there not to help him succeed. She was there to get a snapshot of what he was willing to do at that moment on that day. There were things I knew that he could do--if he had cared. He just didn't feel the importance. And really, I don't care very much. This was a hoop to jump through. It has no bearing on services that he does or doesn't receive. It is just so that they have something to compare it to after surgery.

We will spend Monday night in Chicago and then he will be admitted to the hospital on Tuesday morning to be hooked up for a 24-hour EEG. We are excited that this will be our first time in the new Lurie Children's Hospital of Chicago! The old hospital, Children's Memorial, has been renamed and moved to a gorgeous new building downtown. If you want to take a look, there is a virtual tour here. We'll be spending most of our time on the 19th floor. The new building will mean: Micah will have a private room for the duration of his stay. This is such a relief! The most stressful part of being at the hospital has always been having roommates. You're stuck in this tiny space with other families of hospitalized kids who may or may not share your desire NOT to have the TV blaring at all hours of the day or night. And when your own kid wakes up at four in the morning, it will be so nice to have only two people (me and David) be annoyed by that. Oh, and we can both stay in the room with him! This means easy tag-teaming in case of another 4:00a.m. wake up. We look forward to exploring the new facility, but will miss the noodle and falafel joints in Lincoln Park that have sustained us through Micah's previous hospital stays.

We are still waiting for our insurance company to approve the MEG test that we need to do before surgery can finally be recommended. We have already waited more than 6 weeks. They said "6-8 weeks", so we're still in that window, I guess. I also had to spend way too much time talking on the phone to reps from our health insurance and the hospital and doctor's offices this week after a claim for an EEG was denied, because it was "inappropriate" care. You are probably as surprised as I was. I finally figured out, in the course of these many conversations with different people, that the problem came from a diagnosis coding error. The code linked to this denied claim was too vague to qualify. And yes, I was the one to figure out what the problem was. Good thing I had time and skills and persistence to figure it out. I still haven't nailed down whose fault that was. Everyone is denying responsibility for the error. But they do all recognize that an EEG is appropriate for a kid with  a severe seizure disorder, so I have faith that it will work out and we won't be stuck with the (rather large) bill.

Non-medically, we're having a grand time. David's parents were here for several days last week and Micah had so much fun building towers and lounging on the trampoline with Grandpa and reading books with Grandma. These days he is fascinated by any mag-a-net (as he says it). He has fun building bridges and experimenting with his magnetic Tegu blocks. It is kind of wild how magnets let us defy gravity! His friends Abigail and Deborah gave him a magnet board and he also loves playing with his letters on it.