Carnival of Email #6: Summer Vacation Edition

Dear daughter had another test with the audiologist this morning which began with a screaming, crying fit. She's had a thing about anyone in the medical profession since her trip to the pediatric opthamologist last January to get her eyes checked for CMV; the pupil dilation and light shining in her eyes didn't go over well at all. I'm hoping she gets over things before too awful long, because she's got a loooong road ahead of her when it comes to doctors.

On with the carnival!

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The Omaha World-Herald highlights an outdoor garden that an area school put together with a grant from Lowe's. There's a bare patch at my school that I think would be perfect for a giant greenhouse, complete with outdoor classroom; if I ever need another big project in life, I might go for it.

Science Daily with some important new research on nutrition:

Adults who had improved nutrition in early childhood may score better on intellectual tests, regardless of the number of years they attended school, according to a new article.

This probably speaks to the importance of school breakfast and lunch programs for children from low-SES families.

In Tennessee they've picked up on Marguerite Roza's research and are up in arms over the fact that more experienced teachers tend to go gravitate towards better schools. They're looking at ideas like "combat pay" to solve the perceived problem; it could be an interesting process to watch.

If you show your ass during your high school graduation, I don't have a lot of pity for you. The "Hey, look at me!" mentality is one that I've never really been able to understand.

The San Francisco Chronicle talks about the importance of expanding the school day for kids who are struggling in the classroom. I think we're not far away from a reckoning when it comes to the structure of the school day and school year; the systemic flaws become more and more pronounced every day.

Teaching the Bible as an elective is OK in Texas after action by their state Board of Education. It's about time; the separation of church and state aside, knowledge of the Bible is a Rosetta Stone for understanding thousands of works of literature, film, TV, etcetera.

In the District, Michelle Rhee is looking at creating more preschool-through-8th grade schools, pointing to a research base that shows pre-8 buildings work better for middle school aged kids. There's competing evidence from Philadelphia, though, that the model Rhee's relying on is flawed. It could be an interesting one to watch.

The Chronicle of Higher Education has started a new blog, VP Watch, where they'll be talking about the search for a good vice-president to go along with Obama and McCain. I'm sad that Jim Webb has recently taken himself out of the running.

Colleges are having a Mexican standoff with Margaret Spellings, the Secretary of Education. She says do this or else; they say that the end is near and make raspberry sounds in her general direction. The thing about lame ducks is that their quacking often goes unnoticed. More here.

Finally, ESchool News has introduced some new sidebar widgets that people can use to spiffy up their blogs. I'm considering adding one over to my sidebar, just for the sake of trying something new.

Thanks for reading!

Read more here, if any.

Daughter Update

I've come over time to believe that the phrase "Sleep like a baby" is a load of horseshit, because my dear daughter doesn't sleep. She kicks her daddy in the ribs, she flails, she hits her head against things--she puts out more energy sleeping than I do awake.

My official diagnosis for my daughter right now is congenital cytomegalovirus (CMV or CCMV, depending on where you look). The way that it's manifested itself the most is deafness--she was born with total hearing loss in the right ear, and a 70-80% loss in the left--and the concern with CMV is that she could also lose her eyesight, which would leave her deaf-blind. Yesterday we received a bit of hope from her ENT doctor, who said that the hearing she has is maintaining nicely, and that with CMV kids most of the problems are there at birth, and almost certainly by age three. We're halfway there, so it gives us a target.

Insurance is a pain in the ass. Couldn't live my life right now without it, but it's still a wonky, wonky system. My daughter is qualified for physical therapy and speech therapy, but they only authorize for 12 visits at a time, and the referral has to come from her family doctor, not from the office where we get PT and speech. That means that I have to do some careful calendar watching to make sure we're not running out of referrals, then call the family practice, who calls Group Health, who calls the PT center, who confirms with Group Health, who then sends out a referral. We do this every 10 weeks or so. With my daughter, who is certainly going to need both for the forseeable future, wouldn't it make more sense to give me a 1-year authorization with a reminder to stay under the 60 visit cap that's in the plan?

Such is life with a special needs child.

In other news, we're still efforting getting an appointment with the pediatric neurologist to go over the results of her MRI and find out what exactly that scar tissue in her brain means. That'll be a big appointment. In two weeks we have her eye appointment, and we're praying hard for that one to be where we want it to be. If you're of that bent, and candles lit would be appreciated.

Happy weekend!

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The Next Doctor’s Appointment

My wife met me at the door the other day with tears in her eyes. Never a good sign.

The developmental pediatrician had called with the results of the MRI. Dear Daughter has scar tissue on her brain, and the working theory now is that my wife was infected with a virus called cytomegalovirus (CMV) when she was pregnant. It’s been linked to premature labor (DD came 6 weeks early) and hearing loss, which is also my daughter. There’s also a strong correlation between CMV infection and mental retardation, though I’m not sure I believe that one, because my daughter seems like a pretty smart kid.

Now Mrs. is blaming herself. I’ve tried to talk with her about how that’s a ridiculous game to play that won’t change anything, but she’s still beating herself up pretty hard. I don’t really know what to say to make things better, beyond what I’m already doing. She's sleeping a lot and trying to get back to center, and I let her because she's my center too and this feeling of being adrift hurts.

I didn’t know how much I didn’t know until I became a parent.

To confirm the CMV diagnosis they needed a urine sample. Dear Daughter's not potty trained, so we had to get a urine collection bag that adhered to the skin. Put bluntly, we taped a ziplock to her cooter and waited for her to pee. Hopefully we’ll hear results on that next week. I don’t know what this means for the earlier suspicion of DiGeorge’s Syndrome, but the blood work on that should be back soon, too.

Our new specialist to add to the list is a neurologist, who will take a closer look at the MRI results and administer a CAT scan so that we have a better picture of what’s going on with the brain. We’re also supposed to see a geneticist depending on how her blood work comes back.

The more we know, the less we know. The more I know, the less I understand. I get to my feet, and there goes the rug one more time. The knowledge as power meme really isn’t resonating with me right now.

One day at a time.

Read more here, if any.