Monday, March 31, 2008

News Can Be Good News

We've been operating on the "no news is good news" principal around here, but today Sarah talked to Geri and the news sounded good. She (Geri) is still having some kind of contractions, but only about 3 to 4 an hour. She (Geri) is allowed up to 8 per hour before calling anyone. Not, I imagine, that she is craving more.

She hasn't spotted any more spotting.

Geri had a non-stress test today (a relative term nowadays) and things looked fine (again, a relative term). Both babies monitored fine.

So, sorry for the boring update, but that's exactly the kind I hope to be giving for the next two weeks or so!

Friday, March 28, 2008

Friday: A Spot of Trouble

A bit of a scare today just to keep us on our toes.

Geri had some mild spotting along with some more obviously labor-like pain. She went to her local hospital, where they hooked her up to monitors and used the modern medical technique of having her lay on her side. After a few hours a doctor examined her and determined that she was dilated to 2cm, which is 1cm larger than before. Sarah and I went on high alert. Apparently the side-laying did the trick, though, because after a few more hours the new pains subsided, there was no more spotting, and they sent her home.

So no babies today, although Sarah and I will continue to jump every time the phone rings . . .

Wednesday, March 26, 2008

Is That Near Cincinnati?

Geri's hometown is a metropolis compared to the Ohio town my family is from, but it's still not one that most people have heard of.

As we tell people about our trips to the Buckeye State we're also finding some general confusion about the way Ohio has chosen to place its cities and just how far away we are when we visit.

There's Cincinnati (where turkeys don't fly), which is technically part of Ohio but if you look at the map you can see it is actually attached to Kentucky. In fact, what you can't tell from a static map is that Cincinnati is slowly making it's way over the border. Up and to the right is Columbus, appropriately named after the guy who sailed the ocean blue in '92. I say "appropriately named" because Columbus the City is surrounded by a highway that allows the uninitiated to circumnavigate it for hours before they realize what is happening and exit in The Bahamas. A smaller city that figures prominently for us is Dayton, which is where the Wright Brothers chose not to fly their first airplane. Dayton is up and to the left sightly of a line drawn between Cininnati and Columbus. Way up top is Toledo, which is really a part of Michigan (I mean, c'mon), and finally Cleavland which is unmistakably Ohio but is hiding behind lake Erie.

I have created a Google Map which lays out all the important locations for us. If you click here you may get to see it.

I'll also lay out the locations here for clarity:

  • Highland District Hospital - This is Geri's hometown hospital and where the twins will be born and stay until they are released to us if everything goes according to plan.

  • Cincinnati Children's Hospital - We've never been here. They don't do birthin' no babies, but they do handle all kinds of babies born early. If the twins are born before 35 weeks at Geri's hospital then this is the place to which they would most likely be flown.

  • Kettering Memorial Hospital - Just south of Dayton. We hadn't heard of this place until Dr. Banias sent us there after the ultrasound. His practice is just around the corner.

  • Miami Valley Hospital - Don't get excited. This is Miami, Ohio, not Florida. Just a little less south of Dayton than Kettering. Neither Geri's doctor nor Dr. Benias have privileges here. However, they have a very well respected Neonatal Intensive Care Unit (NICU)and fast helicopter service. So if Geri is in pre-term labor we can't stop, and if we have the option to move Geri from her local hospital to a hospital before she delivers, this is where she'll go.

Wednesday Q & A

How (and where) is Geri?
She's home. We heard for a while that she was going to be simply moved to the hospital near her home, where she would stay until she delivered. That would certainly be more convenient for her and, arguably, her family. It did make us a little nervous for a couple of reasons: (a) Did this mean someone thought she would be delivering in the near future, and (2) the hometown hospital doesn't have a nursery that is equipped to handle 33-week babies. If they are born before 35 weeks the babies will be flown to another hospital.

As it turned out, though, they examined her at the hometown hospital and released her. So she is on Bedrest With Extreme Prejudice (only up for bathroom and maybe an occasional shower).

Is everything still going well?
The labor does seem to be stopped. As far as we know, the babies are still doing well. There is a natural tension that inevitably creeps in at this point. Geri, who is understandably miserable between the twins and the medication, wants the little darlings out. She wants them to be well, but if someone told her they would be born completely healthy today it would be a relief. Sarah and I want them to be as well done as possible before coming out. We don't want Geri to suffer at all, but if we knew they would stay in there until 37 weeks just to be sure, we would be relieved. So we all want the same things, but as we're getting news about what the doctors have (unilaterally) decided, we are listening with slightly different priorities. That's completely expected at this point.

What if the contractions start up significantly again?
If that happens before the twins "turn" 36 weeks, then Geri will go to her local hospital for what they call a "mag wash." That means they'll put her back on the magnesium sulfate to try to stop the labor. Ideally the labor would stop and they would return her to the pump and send her home. If not and they had to go ahead with delivery, we don't know where that delivery would take place. Would they risk sending her back to Kettering where they have a nursery equipped for premature newborns? Or would they deliver at the local hospital and fly the twins to the proper hospital? That would probably depend on how far along she was in labor and how far they thought she could travel. Whatever the decision, rest assured that Geri, Jeremy, Sarah, and I will find out about it long after it has been made.

I use a Tablet PC just like you, with a recent install of Windows Vista. Recently, while I was away, I began having serious problems with it. Any time the User Account Control box (i.e. "Cancel or Allow") would usually appear, it simply doesn't. This means I can't do some important things, like connect to the hotel's free wireless Internet service. Do you have any idea what might be causing this?
I have no idea, but it does sound like it would render your tablet pretty much useless, which might be very annoying if you wanted to, say, research treatments for pre-term labor or keep your family informed about what was going on.

Should I try spending hours attempting to run various utilities as an Administrator, or searching the Microsoft website for solutions?
No, that won't do any good. My recommendation would be, now that you're home, to simply ignore it and hope it fixes itself before you need to go away again. That might work.

Our car, a hatchback, has one of those automatic opener/closer thingies that allows soccer moms to hold on to their grocery cart and 2.5 children rather than having to let go to raise and lower the hatch (although they still have to let go to push the button). Recently the hatch stopped going down. My wife was completely stumped and so she just left the car with the hatch open in the garage, which of course meant she couldn't put the garage door down, either. Any suggestions?
Yes, there is an old, forgotten technique that can still be used to close the hatch. Stand behind the car and raise your hands above your head. Now put your hands on the hatch, and with a quick, downward motion just push the *&#@$ thing closed.

How is Sarah?
She is in Power Nesting Mode. We feel like the timelines are tighter now, so it adds urgency to every preparation. I don't know if I mentioned before that Sarah was diagnosed with a severe case of Bronchitis the day we left for Ohio. She doesn't have a fever, but she is on antibiotics and is supposed to do a breathing treatment every few hours.

How are you?
I may have the bronchitis, too. Maybe not. I have a fever and cold symptoms. I think I was actually sick the whole time we were down there.

So, time for the sick blogger to take a nap. Grandma has Grace today and HJ is at work, so I am in the rare situation of being home and able to rest!

Monday, March 24, 2008

Defeated But Home

We finally got home tonight. We were later than we thought, and we didn't have any closure in Ohio, but we're home. How about I just do a quick status update of everyone:

Geri: Still in her hospital bed. She's doing better on the Terbutaline but still very jittery. It's like she guzzles a pot of coffee every three hours. She was told this morning by the doctor she could go home today, but she needed permission from her insurance company to take the pump home, and she needed to talk to her doctor. And then we waited. When we finally left this afternoon she hadn't heard from either.

Since then she has heard that the doctors talked between themselves. So really she is stuck there waiting for some insurance agent to sign off on the pump, which would certainly seem to be in their interest since they're already paying for the pump and if she goes home they don't have to pay for the room.

The Twins: On the magnesium sulfate, the twins heart rates had both been around 120 beats per minute. When that was removed and the Terbutaline added, they settled in at 160. I pointed out that we were told to expect a 10 beat/minute increase but had seen about 40 instead. The nurse pointed out that the mag sulfate would have suppressed their heart rates (which we hadn't been told) but didn't have an answer when we pointed out that meant the mag sulfate must have suppressed their normal rate by 30 beats/minute.

Otherwise, indications are that the babies are fine. The Girl moves more than The Boy.

Jeremy: He finally had to get back home to go to work tomorrow. He stuck it out this whole time and even slept in Geri's room last night.

Sarah: She's going to work tomorrow, too. She's in taskmaster mode getting things ready for another long-term, short-notice trip if necessary.

Sarah's stomach and appetite still haven't recovered completely from the stomach thing, either, so she's not at full strength.

Me: I'll be on home duty tomorrow. I may have to do some working from home to finish getting a vitally important state report submitted. The rest of the time I'll be cleaning and helping the house recover from our unexpected absence. Grandma and the kids were here but there is still work to do (i.e. litter boxes that already needed changing before we left [shudder]).

I don't like the Terbutaline. It is having a dramatic effect on Geri and on the babies. They keep saying none of the side effects are permanent or serious, but I don't believe that's entirely true. Still, this seems to be the standard treatment for pre-term labor, and I guess they've finally convinced me that the twins are better off in the womb with Terbutaline than outside the womb without it. Not that they've given us all the information we need to make an informed decision. All the decisions seem to be made by the doctors, and we (including Geri) find out afterwards.

Also, I have a low-grade fever. I've been complaining every afternoon and evening that I don't feel well. Tonight the thermometer vindicated me. I have a real fever (99 degrees, but it counts!).

Our post-natal children: They both had fun with Grandma. Harrison went to school today and Grace stayed at the house with Grandma. They both seem to be over the illness, but we haven't had a meal with them yet.

Grace won't be much help with the state report tomorrow but she may help with the house ("Hey Grace, want to dig in the kittie's sandbox?")

Grandma Labuta and Grandpa Joe: I expect they will sleep well tonight. Maybe they already are! They were an immense help through all this.

Time to go tend to my raging fever and go to (my own!) bed.

Sunday, March 23, 2008

Sunday Night Update

It's 10pm and we just got back from the hospital.

First of all, we were happy to see an email from Emily with more good news about Claire. It sounds like she is making remarkable progress.

Geri made considerable progress today, too. They took her off the magnesium sulfate. It turns out that does have an effect on the whole cardiovascular system of both Geri and the babies. In fact, we were told today that when babies are born within hours of coming off the mag sulfate their breathing and heart rate are often suppressed enough that they need assistance until it wears off. There was never any mention before that it would have any effect on the babies. Supposedly it just worked on the uterus.

To replace the magnesium sulfate, Geri was put on a Terbutaline pump. That is a little gadget that pumps a small amount of -- you guessed it -- Terbutaline into a tiny tube that goes into her leg subcutaneously. That is supposed to prevent the labor from starting again. It does have some side effects. I asked specifically about arrhythmia, for example, and was told there was no danger. Now that I'm reading about it I see that arrhythmia is on the list of rare side effects.

In general, it hasn't been a good weekend for informed consent.

Geri is currently feeling extremely jittery and anxious. The Terbutaline "pusher" who hooked her up said that was normal at first and she shouldn't worry about it.

Sarah and I are going to go camp out at the hospital early tomorrow morning in the hope of being there when the doctor comes to see Geri. The word we got tonight was that she will be discharged tomorrow, possibly early tomorrow. We'll see. Sarah has to work tomorrow. I don't have to go to work but I do have to be at a (real) computer and available to work for an important report. We've also got a long list of things to do in case the Terbutaline doesn't do the trick.

The kids are home with Grandma right now. They had a good Easter without us. It helped a lot that Aunt Amy was there. It's a real treat for both of them to see Aunt Amy.

More to follow, but I most likely won't get a chance for another update until after we're (fingers crossed) home tomorrow.

Saturday, March 22, 2008

Dayton Update (Can't Really Call It News)

Once again I'm submitting this from a hotel lobby and people are waiting for me to finish. I'm going to start by pasting in Sarah's email, which explains things better than I could (I might edit a little):
If you haven't check Scott's blog recently, the latest news on the twins is that they tried to make an early arrival on Friday. Geri came down with a stomach bug on Thursday night, which caused her to vomit great distress. This then brought on major contractions. We had an ultrasound appointment Friday morning and that's when we discovered that she was partially dilated and continuing to have major contractions. Geri is The babies are now 33 weeks -- they are a little too soon to be born.

The doctor sent her immediately to Kettering Memorial Hospital (near Dayton, OH) where they have a Level II nursery. They started her on magnesium sulfate (an anti-contraction medicine) (a very general muscle relaxant that can depress cardiovascular function in the mother, and as far as I know, the babies) to get her contractions under control. They also gave Geri two rounds of a steroid to mature the babies' lungs just in case they could not stop the contractions. Fortunately, the mag sulfate drug worked and she's still having contractions, but they are much less severe and farther apart.
They are going to take her off of the mag sulfate (unless they ask yet another doctor who has another opinion) and start another drug that will be administered through a pump that she can take home with her. This pump will be "installed" tomorrow and they want to monitor her for 24 hours (unless they ask yet another doctor who has another opinion) before they release her. We'll be here until she is released to go home, which will hopefully be on Monday.
So bottom babies yet, Geri resting fairly comfortably, Grace and Harrison home with Grandma, and Scott and Sarah a little less stressed out for now.

So I guess I'll just a few things to that:
  • We packed for ONE NIGHT, so we're out of clothes.
  • The hotel is very nice. We spend most of our time in the hospital, of course, but at least we have a nice place to sleep.
  • You're not likely to see the best of a hospital on a holiday. Kettering seems like a great hospital, but Geri was largely ignored today. Sarah and I have lots of questions for the doctor who is making the decisions (note I didn't say recommendations) about her care. But his orders are given by phone to the nursing staff, who has only been letting little bits of them get through to Geri. Given our history, Sarah and I like to be much more actively involved in medical decisions.
  • I'm uneasy about pumping muscle-relaxing drugs into the twins, particularly when Geri is at home and unmonitored. Maybe somebody could calm my anxieties about that, but there isn't anybody around to even try.
  • I miss the kids a lot already. They really did amazingly well with all the waiting around they had to do yesterday. I know, though, that they are a lot happier back home with Grandma than they would be here.
  • It doesn't seem likely we'll make it to the 18th now, both because of the early labor and because of the fact that they are big for their "age" (the girl is 5lbs and the boy 6 lbs 3 oz).

Well, I've overstayed my turn at the keyboard so I should go. More to follow . . .

Adventure in Dayton

I just have a few moments at a hotel lobby computer here. Long story short:

We all came down Thursday to stay over before an ultrasound on Friday. Geri's whole family came too, so we planned to make a little party of it.

As it turned out, Geri got a bad case of the stomach flu everyone else had. She had a miserable night. Even worse, it appears that trauma sparked off pre-term labor. So she was admitted yesterday and put on anti-labor drugs. They also gave her steroids to increase the chances that the twins 32 week-old lungs would be developed if they couldn't stop the labor.

Skipping to the end, it appears the labor is stopped and we won't be delivering (now 33 week-old) twins. But it also seems unlikely now that we'll make it to April 18th.

Sarah and I are staying down here until Geri is released but Grandma is taking the kids back home.

More to come when I get a chance.

Monday, March 17, 2008

Home Sweet Home

Selfishly, the best news I can deliver about NJ today is that Sarahjane is no longer there. It was good that she went. That was where her mind was anyway, so she wasn't any good to us here. But now she's done it and she's back.

Sarah has been texting me so much good news about Claire it has been hard to keep up. She (Claire) has eaten jello, juice, and broth. She's walking a little. She's making platelets now. They lowered her steroid treatments. Best of all, at last word the tentative plan was for Claire to return home this Wednesday.

I'm sure it will still be a long, hard trip back to regular life, but it sounds like the journey has begun.

[p.s. - Emily sent word that their home phone isn't working right now, so the best way to reach Emily and Mike is by cell phone.

Emily, I took your cell phone numbers down just to make sure no bad guys can get at them! Sarah will email them to her family list.]

Happy 80th John (Doe)!!

This is, after all, a publically accessible blog, so I don't want to give away too much private information. Suffice it to say that on a day in 1928 (not saying which day exactly) was born an intelligent, good-natured conversationalist who has come to make all of our lives better and more interesting. While we don't get to see him nearly often enough as he hides out in his undisclosed tropical location, it is always good to know that he is attending to the needs of the Burke matriarch and looking for interesting things to send us all.

John (seen here in a rare photo without his trademark dinner jacket and trousers) is a valued member of our family and I am looking forward to seeing him again soon.

Happy Birthday John!

Sunday, March 16, 2008

Sunday, March 16 Q&A

How is Claire?
I haven't head any new medical news. I did hear that she walked to the ice machine. I don't know how far that is, but it's not the sort of thing I expect is right next to her bed. So that's more good news.

How is Harrison?
No barfing last night. He still has a fever today but reports that he feels much better.

How are you?
No worse, which suggests to me I'm going to dodge this.

What is a typical reaction of a three year-old to having her Mommy out of town for a few days?
Incessant talking and asking questions (i.e. Chatterboxism). It can be quite distracting from doing ANYTHING ELSE AT ALL.

Is she talking to you right now?
Huh? Oh, yes. Yes she is.

I'm trying to use Visual Studio 2005 to create an ASP.NET form that UPDATEs a record in a large-ish SQL Server 2005 database through an ObjectDataSource control. I keep getting an error. What's going on?
This is a quirk (arguably: bug) of the ObjectDataSource that will occupy hours of your precious development time. For some reason, in order to get this to work reliably you have to set the primary key to editable both in the database and in the user interface(!!). That's a bad, bad idea. You may be able to get it to work by Googling around for a hack that involves manually editing the ObjectDataSource and manually setting some properties. But if this is just a one-off form, I recommend using a SqlDataSource instead and being done with it. What you give up in multi-tier best practice you'll regain in reliability. Hopefully this problem will go away with LINQ.

My wife recently bought one of those Scrubbing Bubbles Automatic Shower Cleaners. Those things don't actually work, do they?
To my amazement ours does seem to be working for us. We have well water with a water softener and a rather forgiving shower enclosure with glass doors, so your mileage may vary.

It almost seems like my shaving mirror is getting usable again since we started using this device, but I didn't think it sprayed that high. To check, I'm thinking of peeking in at the device while it works, being careful to open the shower door only while the nozzle is spraying the other direction. What do you think?
I would recommend not doing that. The little sprayer rotates a lot faster than you think, so when you slide open the door and peek inside, instead of forbidden Scrubbing Bubbles knowledge you will just get shower cleanser sprayed in your eyes.

Is it caustic?

So do you think it is spraying my mirror?
Surprisingly I do have an answer to that. Considering the mirror is lower than eye level, it must be.

What is the state of the house with Sarah out of town?
Don't ask. I can report that the shower is quite clean.

As long as you're sitting at the computer, shouldn't you be programming?
Oh, yeah. Gotta go.

Saturday, March 15, 2008

Things are going swimmingly

Getting out of the deep end: It sounds like things are continuing to improve for Claire. She's been out of bed a few times. The bleeding in her lungs apparently left some residue behind and they want to get her moving around as much as possible to break it up. She's really looking forward to the jello, although she is mildly nauseated much of the time. Sarah clarified that the mild chemotherapy is a treatment she'll need on a weekly basis for a while. So she's not plugged into it all the time and the dose is low enough they don't seem to be expecting serious side effects.

Sarah also reported that Claire misses her home and her friends a lot and is very eager to get back to them. Which leads to the best news: There is a possibility that she will be released to home sometime next week! She'll still have to go back for treatments and such. Her biggest goal right now, says Sarah, is to get to her prom in six weeks. I'm sure there are obstacles to that I don't know about, but from where I sit that sounds like a reachable goal.

Treading water: I'm sick, but it's coming on slowly. I can feel the fever sneaking up on me and my whole head is feeling clogged up. If I can hold on through the weekend while parenting and simultaneously doing some complex programming needed for work before Monday AM, work a solid day Monday preparing data for a vitally important state report that's due Tuesday, be well enough to attend a Microsoft launch event Tuesday that I've been eagerly awaiting for months, get some other important work done at work Wednesday, then I'll be able to recover on Thursday for a few hours (with Grace) before we leave for an ultrasound in Dayton.

Now that I type that I realize I'm completely screwed.

Going under: Harrison is sick. It came on quickly. He wasn't feeling well this morning before he was to attend a birthday party at the Saline Rec Center (pictured above) at noon. When we got there, he reported he thought he was going to "barf" and he wanted to go home. I attributed it to nerves, although I had a feeling there was more to it. I left Harrison and came back two hours later. Sure enough, I felt quite smug when the Mom In Charge reported that as soon as they started swimming Harrison perked right up. In fact, I had trouble getting him to get out of the pool to come home.

When we got home, Harrison walked through the tiled laundry room, past a bathroom, through the tiled foyer and hallway, across the wood-floored kitchen, entered the carpeted family room, and -- you guessed it -- barfed. He's been laying on the couch ever since and he definitely has a fever. I'll get him to bed early tonight and hopefully he'll be better tomorrow. I was counting on Grandma taking Harrison out during Grace's nap time tomorrow so I could do my work programming. If he's not well enough then that's off. We would all be disappointed.

We'll see . . .

Jersey Report - Sat AM

Just got off the phone with the Temporary Jersey Girl. She made it in last night.

Updates on Claire from The Garden State:

  • Claire has had more tubes, etc, removed recently, which must make her feel better.

  • She has been out of bed a few times.

  • She'll be moving out of Intensive Care as soon as there is space somewhere else.

  • In addition to the very specific chemotherapy Claire is receiving, she is getting a steroid treatment to reduce swelling.
  • If her pancreas performs as expected, Claire will actually be able to eat some jello in a few days!

As for things here in the Multi-Primary State, we're getting along. The bedtime routine was all out of whack without Mom, of course, but teeth got brushed, pajamas donned, and songs sung. Grace pointed out with panic as she was dropping off to sleep that she had forgotten to wash her face. I told her we would do it twice today.

The kids both really miss Mom. Gracie keeps saying "I want my Mommy back," particularly when I get something wrong.

I discovered one of those "parenting tips" to make bedtime go more smoothly: Keep the kids up way past their bedtime. Then they don't argue about going to bed and fall right off to sleep when they hit the pillow.

I wonder if the same would work for mealtime? Can you get a kid hungry enough to eat a Ceaser Salad? See, put a psychologist 100% in charge of the kids for a few days, and these are the kinds of things you can learn.

Friday, March 14, 2008

Claire Update as of Friday

Sorry for the delay in getting this information posted. Knowing that Claire is doing better and that Sarah is going out there, I haven't been getting information as often as before.

This is what Sarah told me as of this morning:

  • Claire has been diagnosed with Hemophagocytic lymphohistiocytosis (HLH). At first that was what they suspected, then questioned, then doubted, then began to suspect again. This week it was confirmed by a bone marrow biopsy. There are a number of causes for HLH. Since Epstein-Barr is the cause of Mono and one cause of LHL, I'm guessing that's the cause for Claire. That's just my guess, though.
  • As treatment for the HLH, Claire will begin a low dose of chemotherapy soon, possibly today.
  • As of yesterday, Claire was experiencing some abdominal pain, which Emily attributed to pancreatitis.
  • Claire has been scheduled for an MRI of her head for days, but it keeps getting rescheduled.

Sarah leaves this evening for New Jersey. I'll be getting regular information from her and I'll post updates as fast as possible (for a single parent).

Thursday, March 13, 2008

Sarahjane is NJ Bound

View Larger Map

There are lots of reasons not to go, but the reason to go trumps them all: She wants to be there. There's nothing she can really do, of course, but still.

So Sarah is leaving on a jet plane Friday night and will return Monday afternoon.

Some Comments About Comments

I'm getting feedback that people are reading the blog but are unwilling/unable to leave comments. If you've got something to say that you would like everyone to read, please, leave comments. Here are the most common reasons people have given for not posting:

"Everyone will be able to read what I post"

True. In fact, that's the idea. If you have something private to say, then you should stick to the old fashioned, much more personal way: email.

"I don't have a Google (Gmail) account."

You don't need one. Well, you don't need one to post (you really do need one because Gmail is totally cool and everyone has a Gmail address - even Microsoft fanboys like me are using them now). As you can see from the picture, at the bottom of the list (circled in red) you have the option of signing your post with just your name. You can even make up a name if you want.

"I don't want to post my name on a public forum."

True, there are evil 'bots searching the Internet all the time harvesting names. Without an email address that name is pretty worthless, but if it makes you uncomfortable just click the little "anonymous" circle and leave off the name altogether.

"I don't want people to know I associate with you."

Well, Mom, I can't help that, can I? Just use the anonymous option.

So go ahead. Click on the "[x] Comments" link below and join in!

Tuesday, March 11, 2008

Impressive Napping

Grace isn't big on naps, and I tend to keep us running around so much in the afternoons that she doesn't often get much chance. She needs them, though. She's a bear in the evening if she hasn't slept at least an hour in the afternoon.

She does fall asleep in the car. So a pretty common scenario is that we're driving along, having a conversation, pointing things out to each other along the way, and suddenly I realize I've been able to follow several paragraphs of whatever podcast I'm listening to without distraction. I check: Sure enough, she's out cold.

I'm getting pretty good at slipping her inside without waking her. No matter how far gone she is, if I try to put her on her bed she jumps awake and that's the end. So I just lay her down on the rug in the foyer and she can sleep for hours.

Harrison and I can hold normal conversations and watch TV. I step over her on the way in and out of the den. The cats sniff her every now and then. I haven't tried vacuuming yet, but when this girl naps, she naps.

Just Like His Dad

Coin structure Harrison has trouble paying attention to long, tedious school tasks, yet completely on his own he built this . . . structure out of coins. So much like me. I can't pay attention for more than a few minutes to something that doesn't interest me. But give me a creative task, and however tedious I'll stick to it like the most anal-retentive perfectionist you ever met.
I don't remember making anything like this, though, when I was seven years old. You can see that he started with simple towers, but when those started getting unstable he came up with the idea of staggering them like bricks.

What impressed me even more than Harrison's design skills was how well he took the fact that his masterpiece would have to be torn down. I thought he would flip out at that, but he just suggested I take a picture of it and post it on here.

So here it is!

I Did Say To Use Pencil

Our momentous, life-changing family event has been rescheduled due to someone's work schedule. It's actually a very important person who needs to be there, and as it turns out it's a very good thing medically, too. Every day those little lungs have to develop is a bonus. So we're glad it worked out this way.

The new date: Friday, April 18th.

Monday, March 10, 2008

Claire Having A "Wonderful" Monday

Emily reports that Claire is off the breathing tube, her organs are working better, and her bone marrow is making blood. Current bone marrow biopsy results suggest she does NOT have HLH.

What a difference a couple of days can make!

Sunday, March 9, 2008

Follow the Bouncing Knitting Needle

I got to play my trombone on Thursday. That's something I do every few months. There was a time (back in the late-80s/early 90s) when I would practice hours a day, so I'm finding my current once-a-quarter practice regimen a little lacking. However, I wouldn't be playing even once a year if it weren't for the Saline New Horizons Band.

When my mother, Mary Labuta (formerly Mary Orwig formerly Mary Shepard) and her husband Grandpa Joe (formerly Dr. Joseph Labuta formerly Joe Labuta) came to Saline a few years ago, they started the Saline New Horizons Band. It's a part of the national New Horizons Music Association, which was started by Roy Ernst, a professor of music from Eastman, former professor at Wayne State, and still a friend of Grandpa Joe and Mom. Grandpa Joe directs the Saline New Horizons Band while Mom plays various woodwind instruments (usually bass clarinet) and serves in a number of indispensable positions in the group. Since the Saline NHB was so small during its formative year they asked me to play for some of the concerts. It was fun to take out the horn again, and although the band has seen amazing growth over just a few years and they don't really need me anymore, I do still play when other obligations occupy their regular players. Thursday's Saline Evangelical Home concert was such an occasion. Since the Evangelical Home is also the current home of Great Grandma Wealthie Shepard (formerly Grandma Wealthie Shepard formerly Wealthie Meyers) there was more than one reason to do the gig.

Unfortunately when I agreed to the gig I didn't realize that Harrison only had a half day of school. That meant that by the time he got off the bus, I had less than an hour before the concert started, during which time I had to feed two kids, load them into the car, get to the Evangelical Home, park (no small feat), get into the building, FIND the concert, and get read to play. I JUST made it.

I was greatly impressed and encouraged by the way Harrison helped with the whole thing. He held Grace's hand as we walked through the parking lot and my hands were full with my trombone and music stand. He helped keep Grace from going into tantrum mode a couple of times during the concert. And at the end, when my hands and Grandma's hands were full of instruments, he pushed Great Grandma back to her room in her wheelchair. With his help, for the first time I could see how it might be posssible to leave the house with four kids (not that I have any plans to do that when not absolutely necessary).

Marjorie Shelton has played flute in the band since the beginning, and her husband The Honorable Donald serves as regular photographer and webmaster. Unfortunately The Honorable Donald also has some kind of day gig, so he wasn't available for this daytime concert. So I handed our little HP camera to HJ and told him to take as many pictures as he liked. You can see that he did.

Dr. Grandpa Joe has written a series of textbooks about conducting and taught generations of Detroit-area music teachers to conduct. So you'd think when he goes to a concert he might remember to, you know, BRING HIS BATON. I mean, that must be lesson one of any conducting book, right? Well he missed that little detail for this concert. So a hunt went out for baton substitutes, and a knitting needle actually turned out to be a pretty good analogue. Something for the next edition of his book, I guess.

I think the concert itself went fine. I say "I think" because I was sight reading most of the music and had a three year-old hanging on to me, my trombone, and sometime even my slide as I played. I didn't have much attention left over to devote to critiquing how everyone else was doing. I just know that I stayed with the knitting needle, never noticed that I strayed too far from the rest of the group, and didn't make any embarrassing mistakes.

As usual, you can see more pictures of this event at the Flickr site.

A Better Day for Claire? (Sunday)

Sarah got a text from Emily this morning that after a rough night, Claire seems to be doing a little better today. I'm sure things are still very tough in NJ, but that news sure lightened things up a lot around here.

Sarah has her cell phone attached to herself 24 hours a day. Any time she reacts to it play is stopped, typing is halted, and TVs are muted as we all look expectantly for news.

I suppose this is good practice for early April.

Saturday, March 8, 2008

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.

Friday, March 7, 2008

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.

Wednesday, March 5, 2008

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 . . .

Monday, March 3, 2008

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.