10:00 AM: Our first session – Managing OI in moderate children. This was mainly about the different treatments available for children with moderate OI, and what kind of effects they have. We’d heard a lot of this before, but it was interesting to hear about some of the other types of treatments that are now being used. Pamidronate is still the big one, but there are several other treatments now being administered. The main one, Zoledronate, seemed like it has some potential.
Definitely the most controversial thing about this session were the views about treating OI kids. If you’ve followed this blog at all, you know that the advice we’ve gotten from two different doctors, one with Kaiser and one with the L.A. Shriners, was to hold off on the Pamidronate. Wyatt has been growing and developing well, and they didn’t feel it was necessary to put him through a pretty hard three-day treatment when it didn’t seem necessary. The theory is that we can always start treatment if Wolf gets more fractures, or if he struggles with early development. Julia and I felt that was a reasonable approach. And one of the doctors who presented this session seemed to agree with that philosophy.
The other doctor who presented is a big proponent of starting the treatment early in infants, even though there may not have been any problems yet, so as to take advantage of as much vital development time as possible. Many other parents we met with agreed with him, as Pamidronate has done wonders for their children. I understand both sides of the argument. The main thing for us is doing the best thing for Wyatt. And I get that Pamidronate is generally helpful with extremely rare long-term side effects. But the treatment is also three days long, and can be pretty tough on infants as young as our son – usually accompanied by flu-like symptoms and requiring an IV. And when you throw in that he’s doing so well as it is…
It’s something for us to think about. Right now, we’re still of the opinion that we'll hold off for now, but as soon as he breaks again or if he seems to be lagging behind the development curve substantially, we’ll start on treatment as soon as possible. But I appreciate all the advice we got from parents who are glad they started early. We’re keeping that in mind.
11:15 AM: Got a call from the day care where Ben and Micah were spending the day. Apparently Micah hadn’t stopped crying since we dropped him off. Fantastic. I made my way down there and tried to comfort him. It took awhile, but I finally got him distracted by a little bowling set. So I snuck out the door, thinking I was home-free. And then I heard screaming and wailing and pounding on the door behind me. It appears that my absence was noted. It broke my heart just to keep going, but it would have been worse if I’d gone back in. I hope he’ll forgive me someday…
11:30 AM: Our second session, on splinting. This was not at all what we hoped it would be, although it seemed useful for some people. We were hoping for some instruction on how to do splints at home in case of fractures. It wound up being a demonstration of a certain brand of casting material. We left a bit early to pick up the boys and go to lunch.
12:30 PM: We met up with Jen and Cory for lunch at Pizza Shmizza in downtown Portland. I think they went a little heavy on the Shmizza.
2:00 PM: We dropped the boys back off at daycare, with more drama, and went to our next session, which was regarding exercise strategy for children. This was a good session, as we learned a lot of useful things about how to help Wyatt exercise to develop well and to recover fully from fractures. The presenter emphasized the importance of working in water, and how it’s a great way to build strength without putting bones at much risk. Given how freaked out of pools Ben and Micah are, this gave me hope. Maybe Wyatt will be my little swimmer, although water polo may be a bit out of his range. We’ll see!
5:00 PM: Pick up the kids and get back on the train. Micah did a lot better on the second go-round of day care. I guess the day care supervisors discovered his weakness for snacks or something.
6:30 PM: After an aborted attempt to find dinner at a rather questionable restaurant in a sketchy part of town, we took the advice of Big Ben (who was joining us again), and went to Cart-topia. The best way I can thidescribe it is a hippy version of a mall foodcourt. Definitely very Oregon. I had a spicy andouille sausage. Little Ben ate an entire giant hot dog. Big Ben shared a large tray of poutine, which consists of French fries, cheese, and gravy. It doesn’t get much better than that. Wyatt clearly wanted some of the poutine, but he got formula instead. Sorry, Wolf, we’re going to make you wait until you’re at least one before you start clogging your arteries. Some of us got crepes for dessert, while I shared a mini apple pie with the boys. Good stuff.
8:30 PM: We got the kids to bed and played a few rousing games of Zooloretto. For any of you who like playing boardgames, I would heartily recommend it. It’s a great family game. It can get a bit intense though, especially if an un-named sister of mine steals one of my kangaroos.
11:00 PM: To bed in our hot stuffy room with the barely functioning air conditioning.
Saturday, July 10th
8:30 AM: After taking the train over and continenting our breakfast (I switched it up and threw some granola in my yogurt, just for fun), we headed to a session on lower extremity surgery. There was some interesting stuff here about the different types of rodding procedures that help straighten and strengthen bowed leg bones. That kind of surgery, as far as I know, is almost never done on children under two, so we have awhile before this comes up. Still, it’s good to know what’s out there, and given the shape of Wolf’s femurs, this is definitely something that may be in our future.
10:00 AM: One of the OI parents was kind enough to put on an impromptu home splinting demonstration for us new OI parents. She even made a couple for Wyatt to use in case one of his femurs fractures. She talked about keeping a “break bag” on hand to use in situations where it’s tough to get to an orthopedist. This was very helpful for us.
11:30 AM: A session about clinical trials and some information on growth deficiency in OI. There was some good information here, but nothing earth-shattering.
12:30 PM: Lunch at good ol’ Carl’s Junior. We decided we’d had enough Shmizza for one trip.
We had a fun time drinking some beers, throwing a football around, talking about beer, watching our kids play on the playground, having a roundtable discussion about the nuances of beer, getting eaten alive by swarms of mosquitoes, and then drinking more beer. It was basically like what we do on the blog, only in real life and with more bugs. I had a great time and so did the rest of my family. If any of you from ATQ are reading this, thanks for coming and hanging out! If you’re ever down in SoCal or we get back up to Portland, let’s do it again!
6:00 PM: We left the picnic and headed to the conference dinner. We didn’t have time to get back to the hotel room, so we went in our grubby park clothes. We sat near the doors so we wouldn’t look too out of place.
7:00 PM: A mom and her son with OI joined us at the table, as well as a friend of theirs. They were from Maine and New Hampshire, respectively, so we had a good time talking about the vast differences in the places where we lived. Julia chided me for bragging about being able to barbecue in March.
When we began eating our salad, the waiter came over to us with a couple bowls of fruit. For the kids, they would substitute the fruit for the salad, which had been placed at every seat beforehand. Well, Micah happily accepted the offer of fruit, but then the waiter looked at me questioningly. It seems that Ben was eagerly demolishing all the tomatoes and carrots in his salad, and was already halfway through it, with no signs of letting up. I told the waiter not to worry about the fruit. Talk about polar opposite children…
8:00 PM: The boys had finished their desert and the dinner was wrapping up with some awards being presented. Wyatt was being great, as always, but our older sons were obviously not happy with the lack of entertainment options presented at this dinner. They like a bit of theater after their meal, and an award ceremony just wasn’t cutting it. Pretty much our only regret about the whole conference was that we couldn’t stay longer to chat with our newfound friends and take more pictures. Such is life raising small children. It’s okay, we still love ‘em.
8:30 PM: Back to the hotel and to bed with the boys, mom and dad shortly thereafter.
Sunday, July 11th
9:45 AM: We finally got out of the hotel and went to OMSI, a science and discovery museum in Portland. It was a pretty good time for everybody, and certainly something we would get passes for if we lived in the area. Micah’s favorite thing for awhile was an old Pacman game that had been slowed down to simulate the effects of alcohol on your reaction time. I don't know what that says about him. Probably just that he likes video games. Ben loved the machine that took your picture and then aged your face thirty years. They both had a blast in the kids’ area that had a small playground and a room for crafts (they made some spin art). Even Wyatt got to play in a little nook that had some toys for infants. His favorite thing was looking at the colorful fish in the fish tank. It was a good way to end our trip.
2:00 PM: We left OMSI and headed back to the 5 freeway. We said goodbye to Portland as we left for home.
2:05 PM: Micah, whining, says, “I want to go back to the Red Lion hotel!” Seriously. Words fail me.
6:45 PM: McDonald’s again. To whoever owns the McD’s in Weed, California: You’re welcome.
Monday, July 12th
5:30 AM: After 15 and a half long hours in the car, we’re finally home. It’s good to be back.
We had a great trip. We had fun, learned a lot about OI, and made some great new friends. Thanks to everyone who was a part of it!
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