Yes, you!

Is there really anything I could add to this? Oh yeah—he’s climbing on things now, too!

I’m still pretty sure Joshua has Alport Syndrome, though. This fever was just a fever, but it seems to have caused some symptoms that pretty much only show up if the fever victim has a disease like AS. Prayers are still appreciated.

Thanks, everyone.

The hallmark of Alport syndrome is blood in the urine (hematuria). In boys with X-linked Alport syndrome, hematuria first appears in early childhood and their urine always tests positive for blood. [...] The hematuria of Alport syndrome is usually microscopic, meaning it can only be detected with a microscope or a urine dipstick. Sometimes children with Alport Syndrome have brown, pink or red urine (gross hematuria) for several days, associated with a cold or the flu. This gross hematuria eventually stops on its own. It can be frightening, but it is not harmful.

Source: Inheritance of Alport Syndrome & Your Child (Renalife)

If only we knew this before taking Joshua into the emergency room on Saturday night. It was especially stinging because:

1. we were there till 5:30am Sunday morning,
2. Joshua got a catheter so they could get a urine sample,
3. they told us to come back Sunday afternoon for antibiotics only to tell us at 8:00pm (following a three-hour wait) that it was a 24-hour dosage and they wouldn’t be giving him any then,
4. we had to follow up at the doctor’s office the next day,
5. he needed a 10-day antibiotic prescription,
6. the doctor wants a renal ultrasound this week, and best of all?
7. We have no health insurance. (In a touch of irony, we just couldn’t afford it this year.)

So now we’re weighing our options—all of them. This was also a bit of a wake-up call for me personally, because I’ve been living in this sort of “we don’t know if he’s got Alport Syndrome or not” limbo of blissful ignorance. Now I’ve got to wake up and be the responsible daddy, because this is going to be a lifelong battle: the only options for an Alport Syndrome sufferer are dialysis and kidney transplants. There’s no cure (yet).

I’m going to be a sporadic blogger for a while (it’s already started, I guess, but this makes it official). We’ve got some things to take care of before I can focus on this blog the way I was for a while there. In particular, we need to secure prayers, health insurance and a good pediatric nephrologist (preferably nearby, like at Johns Hopkins).

Right now my greatest temptation is to pull back from everyone around me and just sit quietly in a little bubble of depression and fear. Feelings of inadequacy (a distortion of Phillipians 2:3′s “count others more significant than yourselves”) lead to my believing that people either don’t/wouldn’t care, or that they’d see this as petty compared to what they’re dealing with. Either way, I feel like I’m just whining if I talk about this and I’m honest about how much fear and doubt I’m living with right now. So I just don’t talk about it…and all that does is make things fester inside me.

And then I go to work and make comic books, and it all seems so surreal. It’s like amusements are the “important” part of my life (my career), while what are quite possibly life-and-death matters (searching out the latest AS research and good doctors) are relegated to hobby status.

We live in a screwed-up world, and some days it leaves me in the fetal position.

That’s right: it’s new baby time!

Joshua Felix Seitler was born at 4:59am on July 1st! He was 21¾ inches long, weighing 8 lbs. 11.3 oz (big boy!).

We went in on Friday morning for a checkup with Nicole’s midwives, and since she was almost at 41 weeks, they ran a non-stress test. First off, the great news: he was head-down! (This boy’s been breech twice in the past six weeks! We were starting to think a C-section was inevitable…) Anyway, during the test Nicole began having regular contractions… and Joshua wasn’t responding too well to them. Next thing we know, Nicole has a room in Labor and Delivery!

Pitocin was started around 4pm, and progress was a bit slow. I tried to be up to help Nicole however I could, but by 1am I was snoozing on the couch/bed in the windowsill any chance I got. Around that time, Joshua’s pulse started really dropping during contractions: he was pretty steady at 120-150 bpm, but the number began to drop to 60 after Nicole’s contractions. (The nurses rushed in a few times that night, trying not to look too alarmed but rather quick to stop that!) At this point, the pitocin was cut back to make things easier on Joshua. It worked. His pulse began to stabilize! Just after 4am, Nicole began pushing. Just before 5am, she was holding Joshua in her arms!

We just got back from the hospital today — with the Independence Day holiday coming up, the pediatrician wanted another day to be able to keep an eye on “Lil’ Shu Shu.” Nicole’s mom is in town this week to help out, too, so you might not hear much from us for a little while. Here’s a movie to hold you off with!

Oh, this guy is so cute! I wanna go watch him sleep some more…

The condensation pan (or whatever it’s called — you know, the thing the water goes in) for our apartment’s central air conditioning fell down two weeks ago. The maintenance crew came in right away to re-attach it, but there was all sorts of water damage in our closet (Nicole photoblogged this). They came out on Monday to re-paint the wall and install a new shelf, but we noticed more water on Monday night! Looks like the pan didn’t just get dislodged; it’s also heavily corroded on the bottom and leaking. There’s a bucket on the closet shelf now, collecting the water that drips until we remember to call maintenance back out to fix it.

Joshua Felix is really wearing his mom out. (You can come out now, you know!) His due date is the 25th, so I know we’ve still got time… and if he’s anything like his dad (3-and-a-half weeks overdue, thank you!) we’ve got plenty of time! Still, we want him out in the open where we can see him! We’re not the only ones; the boys grandmoms have been calling a lot more this past week or so; you know, “just to check in.”

Jordan e-mailed me yesterday to tell me that a guy we were in Cub Scouts with was killed in a
car crash, leaving behind a 2-year-old daughter. It’s an awful tragedy… but since I remember Joe as the class clown (and he’s the only person I know to be posthumously described as “ornery”), I felt it fitting to rhyme the title of this post in his honor. Here’s to you, “laugh-man.”

There’s my boy!

Daddy’s been busy making preparations for the little guy, and Katie has offered her booster seat to her little brother — on the condition that she can sit in a “big chair” at the kitchen table, of course.

Meanwhile, “Shu-shu” (Katie insists on calling him that!) has been happily kicking his mommy for a few weeks now, and Katie and Daddy have written our first song about him:

Little brother Shu-Shu />Crawling ‘cross the ‘partment />Scooping up the dollies />And bopping ‘em on the head!

(Along came the big sister and she said…)

Little brother Shu-Shu />I don’t want to see you />Scooping up my dollies />And bopping ‘em on the head!

I’ll give you three more chances, />And if you don’t behave, />I’ll tell Mommy on you!