Don't scratch your hat!

After a hot and windy few days in Chicago, we arrived back home yesterday afternoon. Development testing is finished for now. We'll wait for a report, though we pretty much know what it's going to say. In fact, I'd rather not know the gritty details. It's just not fun to subject your child to this kind of testing. Micah has been comprehensively tested five time in the past two years. These tests don't reflect the wonderful progress that he has been making in the past few months. And there has been tons of progress, as many of you have witnessed! We are thrilled about this. But these tests only show the "delays." I have come to loathe these tests.

This developmental stuff is much harder to deal with than the medical things. The medical things are relatively easy to talk about because they are concrete. And I KNOW I can't do anything on a daily basis, other than giving the appropriate medicines, to change them. The developmental things, however, are a different story. It feels like I should be able to fix these "delays." That if I somehow just work harder, and force him to work harder, that everything will get better. But I am his mother and not his therapist. I can follow through at home with the suggestions from his therapists, but I can't do it all day long, every day. Neither can he. He's a little kid, after all. So, this, like the fact that he has epilepsy, is something I can't fix. I grieve this. I grieve that he has to work so hard to master some things that just come naturally to other children. This is just as hard as dealing with his epilepsy in the first place.

And these tests will never test some of the things he excels at, like music. He has a spot-on sense of rhythm and pitch. He can make up his own fancy (and musically appropriate) endings to songs--the kid's got flair. When we get to the end of songs on familiar CDs, he not only knows what song is next, but can begin singing it, in the correct key, before it starts. His musical creativity and memory are something special--just a few of the many special things about him!

He's also a big-time trooper! He was hooked up to the itchy, uncomfortable EEG for 23 hours, and was incredibly patient most of the time, even though our mantra had to be, "Don't scratch your hat". We were so grateful (as I posted before) to have our own room in the Epilepsy Center at the new Lurie Children's Hospital in Chicago. When Micah did cry and scream a few times, all we had to think about was helping him to cope and calm down, rather than having the additional worry of bothering whomever our roommate was. And no one else's crying bothered us, either. Micah actually slept about 9 hours last night. David and I also got almost sufficient sleep, despite the typically uncomfortable hospital furniture (new, though it was). Not bad.

We haven't gotten the final results of the EEG, but we did learn that he appeared to have a few of the electrographic/sub-clinical (ones we can't see happening) seizures again. Big-time bummer! Our epileptologist is not alarmed by this, though, saying that it is consistent with the active malformation Micah has. We are increasing one of his meds to try and stop them. The EEG is also still pointing toward the possibility of surgery, but we  have to wait for the MEG test before getting final approval.

All in all these were a good few days, considering that they were filled with medical appointments for a three-year-old.

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.