Our Kids are Driving us Crazy

So, Eva and Eli woke up at 5, after several night wake-ups. (Emily didn't take well to them waking up so early, but we'll just leave it at that.) I took them around 5:30, got them to nap briefly, handed them off at 8:30, slept to 10:20 myself, went to church. Then I took a huge nap with Sam (I slept like two hours, but Sam slept four hours--so not at all tired.) Then Emily took a nap while I was with Sam. Now we three bigger ones are up and the twins are down. Pure craziness. A while ago I saw a review of a popular children't book out now called "Go the F__ to Sleep." The hip reviews I have all seen scold the passive aggressiveness of the book, the anti-child tendencies, etc., etc., but what they forget is that not sleeping will make you crazy. It will make you crazy. There's a reason bad people use it against prisoners, why it's included in military training, etc., etc. It will make you crazy. This is one of the great mysteries of parenting, that you can love someone so much and want nothing so much as to be able to help them, but they have their own wants and needs.

OK, that's out of my system now.

The day was otherwise okay. Skipping the sleep drama, we were a picture of nuclear family bliss. We enjoyed church. We had a trip to the park. The evening has included viewings of Underdog and Chicken Little. A coworker and his wife and daughter stopped over in the afternoon. Sam's wearing his moped helmet and dancing around pantsless (last night he even slept without a diaper with no problems). A bath is in the future. From the happier perspective of evening (after naps and dinner), it was a fine day, solid parenting, etc.

Onto Eva. The little stinker is 6.6 again. What are you doing to us Eva?! The flip side is that she is very cute, alert, responsive, friendly. She was melting hearts at church today. She smiled her way through several sets of arms and made many new friends. Tuesday we go to the hospital to draw blood and find out what we can find out. Still not sure of an exact date on the genetic report, but the more I read the happier I am that we will soon (eventually?) get real certainty on this.

And now some recent pictures (blogger was acting up the last time I posted).

Blocks, walking, and more

A busy few days here. Eli's pulling up really well and clearly wants to walk. They're nine months today, and both show great advances in the last few weeks. Eva's articulating more and has said "da da" some the last few days.

Emily's just put shoes on each of them--it's a lot of fun and I'll post pictures soon.

Sam and I have been doing blocks. We have some of the big plastic ones. The more we play with them the more we can do. Recently we built a tower as tall as me and we've experimented with steps and different features.

Eva's driving us nuts with the weight, however. Today she is again in the 6.6/6.7 range, which means she's essentially where she was three months ago :( Tomorrow she'll have been out of the hospital two weeks. On Tuesday we go for the two week check up. We'd really like results soon. I kind of wish they hand't given us the initial diagnosis, but I'm glad they can do the testing. Today I read it's nearly impossible to get this testing in the States.

On the train...

Today was my first day doing a one-day trip to center city for a committee meeting. On the one hand these meetings are good experience--a mix of two languages, lots of terminology I don't know, a chance to get to know people from different parts of the island, etc. On the other hand, I always struggle with the business vocab (words like "awning," "utilities," etc.) and I'm not able to contribute a lot to the questions at hand. Stilll, I'm almost back home and door-to-door it'll have been about eight hours. I like the high speed train.

Other good news... Eva's up to 6.6 kg! Yes, this makes us very happy. I don't know what's doing it. I keep hoping this was all just teething. She's already got two in and I think the next two will be in soon. She's eating tons of food and we're trying lots of potassium rich things, just in case. I'm getting slightly better at giving medicine, but, wow, it would be really nice if we don't have to inject medicines two a day (or more) for the foreseeable future.

I'm also trying to figure out how timing will affect all of this. In theory, when they're doing the testing they should be starting with the likeliest syndrome and then moving on to the others, something like 3, 1, 2, 4, 5 and then G's. If it takes a few weeks it may mean they're not finding anything. I think Emily and I were both ready to believe she had this the last few days, but now, to borrow the words of my cousin Mary, maybe she was just faking it.

We still feel like we're a little bit rocky at this whole parenting thing. Emily texted me today because she had trouble getting Sam to go to school. We spent a fair amount of time together yesterday, but it is hard to get one on one with each kid, have a house that isn't a total pit, and do some work. And we're feelilng a bit distracted with daily life right now.

I think we could use a vacation. Maybe one weekend we could hop the high speed train out of town and get a couple of days somewhere nice. I'm not quite sure how this would look, but I'm thinking it would be good for our state of mind.

Saturday at home

It was a good Saturday. Sam: took a walk, played with play-dough, played with trains (you can see the track above), played with cars, played with blocks, took a long nap, watched "Cars," pasta for dinner, went swimming with mom. Not a bad day at all. The house even looks okay. Everyone ate well today. Tomorrow's church, which should be fun, followed by a quick trip to the local market and Emily wants to check out a nearby baby store.

Waiting, waiting

Lately I've been singing this song to myself. It's a Taize song they sing in chapel here. It probably makes the most sense during Advent, but in a sense we're living in Advent right now.

Good things: it's a beautiful sunny day to day, we're getting over our colds, I did some reading yesterday and Emily went to class, took a walk with Sam and Eli this morning, Emily's going to swim with Sam later, found a good online group that knows about what B's looks like for people with it.

However, Eva's gone from 6.8 to 6.5kg which is making us a little nervous. If she goes down to 6.3 we probably should take her in for an IV. Not the end of the world, but obviously would be nice if we didn't have to go in that direction. We're trying a wider range of potassium rich foods: carrots, prunes, grape juice, etc. All are supposed to be good.

I'm off to do play-dough with Sam. More later!

Recovering

It's been a rough summer for the family! I heard today my brother went into the hospital with chest pains. Results all came back fine, but another scare on top of several this summer. And not just scary in the past-tense, but in the ongoing, progressive sense.

The upside is that Eva is eating like a champ. I tried a prune-banana-formula gruel yesterday that she ate two bowls of! Sam had a good day also. He played trains tonight, was doing some sort of story with his alligator and monkey.

The last two nights Sam's also offered some interesting thoughts on his pooping. Yesterday he said "not a cockroach... a poop!" Tonight it was "nice to see you!" when Emily flushed it. It's pretty fun watching the wheels churn in that hard little head. I told Barb and Randy that the other day there was thunder outside and I told him it was thunder, but then a few minutes later he came over and explained he wasn't scared because it was "Underdog!" (a move he's been watching lately). Oh, such an interesting world.

I went to language class today. It was good to be back in it again and it was nice to have some time to practice medical terms and also to be immersed in non-medical things for a while. I really like the people here a lot. I think they really understand basic human struggle. One of my teachers lost a brother to a kidney disease and a sister to a stomach illness. This all happened many years ago, but I could tell it was still close to her. She talked about how she and her siblings and their children were all tested for the kidney disease and four of the five had it.

We're still in the middle of things here but the pace has slowed a bit and we're having a little more time to put things back together. People have been very nice to us and we're grateful for the community we have. We'll check in again soon. Jonathan

Check-up

Today was Eva's check-up. They decided not to do another blood test, just because she had several last week. I'd prepared questions, but then the doctor did a fairly good job of anticipating them. He showed us Eva's blood results from Saturday, when she'd been in the hospital on IV's for almost the whole week. Her sodium and potassium were in the lower end of the normal range, she had slightly low magnesium (which can be a symptom), and she had very high aldosterone levels. I can see why B's is their main guess/diagnosis. The doctor said it should take a week or two to test the blood. I think they basically test each type of B's syndrome, looking at the associated mutations. But then there are probably strains that haven't been identified and there are also people who have the same symptoms (and follow the same basic therapy) but don't show up in the genetic screening. And no doubt there are also many, many people who have just been misdiagnosed (here's hoping).

I'm wanting to blow off language study for the rest of the summer. I'm going to try to stick with it in July, but Emily and I may eventually want to evaluate how much more stress our summer can contain.

Thank you all for following along. We're doing okay. I'm still just tired. When I deal with situations like this, it can really keep me up. I think I've now emailed those who don't read this blog or facebook to let them know what we're working on. I'm grateful for the communities here. I am discovering how patients came to be patients, even if I am feeling a bit impatient with it all.