27
July
2010
Three year old stats:
Weight: 12.86kg
Height: 35″
Head: 51.5cm
She’s grown a lot this past year, lengthwise, but she has not put on very much weight. According to the ped, she’s now about 25% for her actual age in weight, and made a huge jump from 3% to 10% in height. Woot!
Head is, of course, still way out of proportion at 75% or some other ridiculous number.
Grammy came and spent the night before Dorrie’s birthday, and Miss D was well behaved. She went to sleep at a reasonable (for her) hour, slept nicely, and then woke up just a little bit before 11am. So we then got her all dressed and packed up and headed off to the Fairy Tale Festival being held downtown at the park. I had been pretty concerned about the parking and traffic situation, and was right to be so, but as it happened, things worked out pretty well: since the festival started at 10, the traffic was pretty light by the time we got there at 11:45, and though there was zero parking to be had, we were able to find a place right at the park to pull off and unload.
Daddy took off to get some gas at that point, and Miss D proceeded up the hill in her chair with me and Grammy. First of all, let me just say that it was HOT. This summer has been one of the hottest I can remember for a very long time, and we’ve had a lot of very bright, sunny, HOT days. To put things into perspective, last year we had approximately 3 days of sun in all of June and for most of the rest of the summer the temps didn’t usually break 85. It’s been 90 and 100s for many many days already this year, and, of course, muggy. We don’t get dry heat.
So it was hot and bright, two things Dorrie has not had much experience with, but she handled it well. She was interested (if serious) and looked around without fussing or being upset. There were a lot of booths set up where you could do various fairy tale (aka princess and fairy) themed crafts. Some of these we bypassed, but Dorrie ‘helped’ make herself a wand and a bookmark. We entered a few raffles, which we did not win. Eventually we came around to the snow cone stand where Grammy and I each got one because did I mention it was HOT?
Apparently Dorrie agreed, because, in the amazing happening of the day, she made peace with her old enemy snow and consented to mouth part of mommy’s snow cone.
We circled back around and got in line for balloon animals (and plants — Dorrie got a flower) when daddy reappeared. By that point it was nearly 1pm, which was the end of the festival, and we had to be back at the house for an appointment by 2. So daddy went off again to retrieve the car, and we waited in the shade for him to make his way back. Amazingly, he managed to get down into the park (against the tide of exiting cars) so we could get everything packed away again, including the little sweat ball Dorrie.
Once we got home, we tried showing her her cake again (she’d examined in the night before with limited interest — see the end of the post for that).
This time we convinced her to touch it, but she was not pleased to find some of it sticking to her when she took her hand away.
She also had no interest in tasting any of the frosting.
But we were all happy to eat it for her.
The last thing for the day was to get her hand prints up on the wall. This went more smoothly than last year, since a) she is more used to going upstairs, b) she now has a real way of being off the vent instead of attaching her to an ambu-bag. We even managed to get her to (almost) put her hands flat by putting the ink on them, then starting patty cake and eventually patty-caking the wall.
The first viewing of the cake.
I hate you all.
Classy.
Posted: little fat fairy, moving forward... or not, our little witch, tales of interest
16
July
2010
Last Sunday we hauled Dorrie out for another outing, this time to Olive Garden. She, of course, had zero interest in any of the food to be found there. In fact, she found this trip much more boring overall than the one we made to the movie theatre.
This time Grammy went with us, and we had a fairly nice lunch. I say fairly, because the restaurant was hot (what the heck is with businesses not having their AC going in the morning?) and because it wasn’t especially relaxing to try and eat while keeping an eye on Dorrie in her chair. Mainly because she just seemed bored. There were other people nearby and she watched them, but she wasn’t very interested in the toys we’d brought or in watching us eat.
So, it was a success (and I was pleased to discover that restaurants are noisy enough that the sound of a suction machine is as nothing), but I’m not sure how often we’ll try it. It’s just as pleasant to sit at home and eat take out.
In an update to the last post, as of last Monday we’ve decided to discontinue all goat milk for now and try and figure out an alternate plan. She was very very phlegmy, she had a rash on her chest which may have been heat rash but may not have been, and it just didn’t seem like the increase was agreeing with her very well. Puking has eased off a bit (except for yesterday, where she did it three times. :P). We’ll wait until we settle out with that before we move ahead with an alternate idea.
Posted: moving forward... or not, our little witch, tales of interest
4
July
2010
A couple of weeks ago we had made tentative plans to take Dorrie to the movies to the early showing on Saturday morning. As it turned out, that was much too early for her; she was far too tired to wake up and slept ’til noon that day.
The showing we had intended to go to was special (AMC’s Sensory Friendly Films — a brilliant idea and we definitely will get to one eventually) because we thought they might be more understanding of occasional noise of suctioning. Those are only once a month, but we still wanted to go, so we thought we might dare a regular showing. When the weekend of the 4th was to be sunny, we thought perhaps the movies would be relatively empty what with people at barbecues and doing outdoor stuff.
Dorrie woke up this morning right before we were going to have to wake her, and that was definitely a sign. We’d had her watch Toy Story a few times this week so she’d recognize the characters (it can take her a while to warm up to unfamiliar shows), so we were all ready.
It turned out we were wrong about no one coming to the movies on the morning of the sunny 4th, but we didn’t hear any sick people in there either so it was fine. Somewhat annoying was the fact that the wheelchair seating was basically a big empty area with one lone seat for the non-wheelchair person with them. But it was right at the back in case it was necessary to make a quick exit.
Dorrie did great! There were endless previews, which neither dad nor I had reckoned with, but I rolled her out to the lobby for suctioning once then and one more time during the middle of the movie and that was it! I was so impressed. She was pretty tired of it by the end of the movie (I think she would do better with something that had a little more music or perhaps starred the Muppets) but she stayed fairly calm until it was all done. It was obvious, however, that she was relieved to get back into her carseat.
Posted: moving forward... or not, our little witch, tales of interest
12
October
2009
They are often making us look bad, with their many weeks of vacation and low-cost health care.
This story from a UK source is really interesting. I saw a blurb about it on Slate and was skeptical (sceptical?), but if the reporting is accurate, Europe once again makes us look bad. We get Jenny McCarthy and the anti-vaccine hysterics, and they get this guy.
Posted: tales of interest, we interrupt this blog
5
October
2009
So, week or so ago, we suddenly noticed that Dorrie had a little bruise on her chin. It was quite a dark one and looked painful, but we couldn’t think when it had happened.
It was starting to fade when the following conversation occurred.
Nurse: I’ve figured out how she got that bruise on her chin!
Me: Oh, really?
Nurse: I was looking at it and it just came to me.
Me: Oh?
Nurse: I had been trying to figure it out for a while, I know the two of you have been watching it, too.
Me: We have. It seems a little lighter today.
Nurse: I think it does look like it’s getting better. It’s nice to know how she did it, though.
Me: Yes, how?
Nurse: When she was lifting her head up and putting it down, she must have banged her chin on something!
Me: *stares*
Posted: medical morons, nurse or no nurse, our little witch, tales of interest
21
June
2009
Dorrie and her daddy get on famously, and I’m sure she knows she’s lucky to have such a dedicated and patient father who:
- Saw her for at least a few minutes almost every single day for the 8.5 months she was in the hospital, even though said hospital was 100 miles from our home and his job.
- Arranged his work schedule while she was in the hospital so he could spend some days working remotely, and has continued to work an unusual schedule mommy can keep her job now that we’re all at home.
- Gets up almost every day at 2 or 3am so that he can take the second shift of watching her at night.
- Does every other trach and circuit change so both he and mom keep in good practice for emergencies.
- Handles most of the calls to insurance/equipment vendors/doctors/pharmacists.
- Plays with her, reads her books, does exercises, and generally spoils her like the little princess she is.
Posted: our little witch, tales of interest
13
April
2009
In news I’m sure everyone is tired of hearing about, the nursing problem continues unabated. After managing to show up for two whole nights in a row, the latest superreliable nurse dispatched from the agency called in both nights last week. I expect that means she’s gone for good, but we shall see if they continue to string us along with promises of her return.
The rest of the week has been pretty calm, and Easter was nice. Dorrie was in the mood to perform, and spent quite a while lifting up her head to look at the mutant singing ducken brought by Grammy. Then I went out to lunch with mom and my brothers while Bob stayed at home to watch her. We brought back food for him and Dorrie decided to scoot around on her back to investigate what was going on at the sofa. She discovered that the sofa is surrounded by evil ceramic tile which does not feel nice to someone pushing herself around on her back.
The biggest negative to the day was Dorrie’s failure to take an adequate nap, which led to a meltdown, a pukey and finally a so sleepy baby who couldn’t stay awake until bedtime and instead slept from 6-9:30pm and then woke up again.
We also had a fun adventure with the ventilator! Since Dorrie was asleep at the usual time we get her ready for bed, I wasn’t able to change the vent circuit. As she was still up around 11:30pm, I decided to do it then and just get it over with. Bob had already gone to sleep, but we do it by ourselves often enough, so I didn’t figure it would be a big deal. (I bet you think you know where I’m going with this, and perhaps you do, but bear with me anyway.)
The change itself went off without a hitch. I fired up the vent again to run a leak test before reattaching Dorrie to it. FAIL! The worst failure I have seen yet, accompanied by a sort of sucking straw noise I was sure meant one of the hoses had a hole in it. But I could not see one or feel air coming out, so I ran the test again and this time it passed. This time I noticed that the bag of inhalation water that runs to the humidifier was not only empty, but that the leak test had caused the bag to inflate like a balloon. Ha ha, I thought, how amusing. I changed the water bag and got Dorrie hooked up.
Then the ventilator began to alarm. HW FAULT it said. WTF I said.
The vent manual, which had been hanging around the living room getting in everyone’s way for nearly a year, was suddenly nowhere to be found. The vent seemed to be working fine. Dorrie’s sats were 100. WTF I said again. HW FAULT said the vent, then beeped some more.
So I went upstairs and woke up Bob and made him come down and see it. Neither of us could guess exactly what the HW FAULT meant, so I got out the computer and started trying to find the manual online. I found it quite easily TODAY, but for some reason last night Google was being obtuse. We called our vendor, who paged the on call person, who paged the on call RT. By that point the vent had changed its mind about alarming and was quiet again. The RT was at least able to assist us in figuring out that HW FAULT meant that probably one of the sensor leads had gotten moisture in it and was helpfully letting us know in the most confusing and panic-inducing way possible. Our best guess is it happened when the vent decided to inflate the saline bag with air.
Finally a picture of Dorrie in her Easter finery. I’ll try to upload a more extensive picture post some time this week.
Posted: nurse or no nurse, our little witch, tales of interest
7
March
2009
Quite a while go, we bought Dorrie a Fisher-Price people airpline for Christmas. Since she had been scared of large toys and had gotten so many other toys for Christmas anyway, we hadn’t given it to her until the middle of February. To our surprise, she didn’t just want to chew on the people, she wanted to play with the airplane.
So we promptly went on a hunt for other toys in the Little People line (digression: this line has been seriously revised since we were children, and NOT for the better; I hate the new people designs) which were similar. The one I wanted the most was the school bus, because I remembered spending quite a lot of time playing with the two buses we had when I was little.
But every store I went to only ever had the Pink Bus.
What is the Pink Bus? It is part of the idiotic idea that pervades the toy industry that requires all popular toy lines to have a separate sub-line “for girls” that consists of the same toys colored pink. There are pink legos, pink ring stackers, pink shape sorters, pink activity centers… sometimes I’m surprised that our medical supplier did not deliver a pink ventilator and oxygen tanks.
The pink toys are almost always vastly inferior to the other, regular toy line. They are less complicated, focus only on things like princesses and houses, and are less interesting to look at, since instead of using a large palette of colors, they tend to be pink with purple highlights.
The Little People pink toys are especially troubling. The pink toys I have seen so far contain no obviously male characters (several androgynous people were allowed to remain). The characters seem also to be predominantly white.
We finally managed to track down the regular school bus at Babies R Us yesterday. It was then that I discovered that the Pink Bus not only contains 3 white female characters rather than the more multicultural Regular Bus, but the Regular Bus contains a wheelchair which was omitted from the Pink Bus. Apparently little white girls do not associate with the handicapped?! I really wonder what kind of message Fisher-Price thinks it’s sending with all of these gender-segregated toys.
Posted: tales of interest, wtf, people