Claire Update - Saturday 11pm

We're worried. It's been a somber and distracted evening.

Claire's symptoms, frankly, appear to be getting worse. If her diagnosis is what they suspect then there are treatments. They have to be right about the treatment, though, or the consequences could be severe. The results of the recent bone marrow biopsy could take days. Claire has to hang on until then.

Sarah is beside herself. Her experience has taught her (for better or worse) that a patient shouldn't be patient when a doctor says to wait. But she knows this one has to be right. The kids keep trying to cheer her up in their seven and three year-old ways.

Unfortunately, a lot of us have lived the terror of being afraid for a child. But still we can't know exactly what Mike and Emily are feeling right now. We just know that parents endure what they have to endure and we wish we could somehow make it better.

And poor Claire is in a lot of pain.

We're worried.

Claire Update (Friday 6:00pm)

Just a short list of facts at this point:

• Claire is was scheduled to be transferred today from their local hospital to the Columbia NewYork-Presbyterian Hospital nearer to NYC


• They may be getting closer to a diagnosis. That would eliminate a lot of the mystery from all this, but of course any diagnosis at this point is likely to be scarier than Mono.


• Emily, Mike, and the doctors are weighing treatment options. How agressive to be at this stage? They're getting lots of advice, and of course Emily and Mike are more knowledgable about these things than most of the rest of us.


• Megan is coming to NJ to help out.

Claire update (Friday 6:34am)

It's been a couple of days of encouraging ups and fightening downs, but Claire's kidneys do appear to be responding to the dialysis. Emily reports to Sarah that they are looking better every day. There is a possibiliy of another endoscopy to rule out more bleeding somewhere.

So Claire's kidneys are starting to do their part. Now her blood has to get with the program.

Email and text messaging is helping with communication, but still it's frustrating to have this happening so far away when it must be so draining to the Reinhards. I wish we could DO something.

Pencil in April 14th

For what it's worth, we have an actual date of delivery scheduled for the twins: April 14th. Assuming they actually cooperate and wait that long, that would make the them just over 36 weeks "old." They could be expected to be about six pounds by that time, which is smaller than the Burke-typical 8+, but is a very respectable weight for a twin.

The babies are in the 60th (girl) and 70th (boy) percentile for growth so far. The doctor said they are developing very well. One of their heads is a little smaller than the other but the doctor said that was nothing to worry about.

Some pictures follow below (scroll down), and as usual you can see just about all our pictures at our Flicker site.

	A short video of the actual ultrasound. Only true pregnancy geeks need click. Much of it is unrecognizable as human, although you do get to see an unmistakably Orwig face or two and hear some heartbeats. Grace's reaction when she saw it: "Is that a monster?" I explained that it was video of the babies, but she looked doubtful.
	An Orwig face in profile.
	Geri (whose last name I won't use here), the wonderful woman who is carrying the twins. We couldn't ask for a better person to do this for us. Geri is a smart, successful full-time working mother of three.
	Geri and her husband Jeremy. Jeremy is a hard-working and supportive father and husband. As a tall, athletic, highly social outdoorsman, Jeremy is pretty much my opposite, but I like him a lot. Doesn't he look like a guy you would want looking out for the woman who is carrying your son and daughter? Geri and Jeremy are high school sweethearts just like Sarah and me.

Claire update (8:45 PM)

Sarah just got a text message from Emily. Apparently there were no lesions in Claire's stomach, but there were some in her . . . maybe nasal passages (? - sorry for the uncertainty). The suspicion appears to be that she had been swallowing the blood from there. Claire had no platelets, and the bleeding started getting suddenly worse, so they brought in an ENT who cauterized the bleeding. At this point I'm assuming that the mono is to blame for the absence of platelets.

Also, they weren't satisfied with how fast Claire's kidneys were responding, so tonight they started dialysis. So that's good for Claire, but it can't be what anyone wanted. Hopefully it will take the pressure off her kidneys and allow them to improve at their own rate.

I had a central line put in once when I was 25 and I was a total wimp about it. I can't imagine how Claire is coping with the kind of plumbing that must be necessary for dialysis.

A Singular Case of Mono

Before I get started, let me say that the end of the story is that Claire Reinhard is stable and seems to be improving toward a full recovery.

Let me also say that I don't know all the details of the story. Sarah has been sending email updates to those who know Claire directly. For now, this is background for other parts of the family. I'll also try to post any updates from Sarah promptly.

Okay, Claire is the second daughter of Mike and Emily in NJ. She's now a Senior in high school (which is terrifying to me because it seems very recent that she was Grace's age, a bundle of verbal skills sitting on my lap when Sarah and I went to visit . . . anyway). A few days ago Emily told Sarah that Claire had a bad case of mono and was expected to miss weeks of school. Shortly after that, Claire began vomiting blood and was taken to the hospital. They aren't sure what caused it (possibly too much Motrin to treat her fever), but her blood cells and chemistry were seriously out of whack and her liver and kidney weren't functioning properly. She was put in pediatric ICU.

After a blood transfusion last night she is doing a little better today. Although dialysis is a possibility it may not be needed as her kidneys appear to be functioning again. They scheduled an endoscopy today at 5:00pm to "cauterize the bleeders". I don't have any more information about the bleeders but if they are there, cauterizing them would have to help.

More to follow as we hear . . .

Mongolian Barbeque

We did an adventurous thing on Saturday: We took the kids to the Mongolian Barbeque in Ann Arbor. We weren't sure how they would take it. On the downside, they serve (primarily) food that is not pasta and white milk, there is lots of noise, actual flame, and there is sometimes a wait involved. On the positive side, they do have (a little bit) of pasta, white milk, and things to watch.

As it turned out we did have to wait but Harrison and Grace occupied themselves pretty well pretending to cook Harrison's hat as a "pizza" and serving it to Sarah and I. When the pager went off Harrison grabbed it and took it up to the hostess himself. It turned out they had also (if you'll pardon the expression) beefed up their vegetarian choices of things to cook, so Harrison was able to select lots of pasta, broccoli, and corn. He literally jumped up and down as they cooked it.

Grace was interested in the cooking and just ate a tiny bit of her meal. But that's all she ever eats at home, too, so we can hardly blame that on the Mongolians.