DorrieDorrie

Once more unto the car-seat my friends5

Today was yet another day-of-many-appointments up at DHMC, although with one major difference: our first appointment was with Child Development, and they apparently only do appointments in the morning. Ours was at 9:15am, which meant that we had to leave the house at 7:15am, which in turn meant we had to get up and get ready to go at 6:30am. We had hoped we could get Dorrie to the car without waking her, and she would sleep for most of the trip up, but that was not to be — she was sleeping when we got her to the car, but we weren’t sneaky enough getting her strapped into her chair, and she was awake for the trip up instead. That meant that, right on cue, she started getting ornery about the situation about an hour into the trip.

She was actually very good during the first appointment. We got her out of her chair onto a mat they provided, and she showed off her motor skills, such as they are, and her typical behavior very well. The conclusion wasn’t anything particularly new or unexpected — Dorrie is showing gradual improvement, and that is pretty much the best we can hope for. There is no saying just how far she will be able to go, so the goal is to keep doing what we have been doing, get as much for her in terms of services as we can, to try to obtain the best outcome possible.

After that, we had a little time to kill, because our next appointment wasn’t until 1pm. Dorrie was pretty happy hanging out in her chair, so we went down to the mall area of the hospital, parked ourselves near some comfy chairs with a table, and took turns going to get lunch. Shortly after I got back from getting my sandwich from Au Bon Pain, Dorrie decided it was nap time. And soon after that, so did I.

Dorrie got a pretty good nap in under the circumstances — me, not so much — and then we went to our next appointment. This one was with the neonatologist primarily, but she was actually kind of busy in the NICU, and was a little late to start, and also had to step out once to answer her pager. We had been told things were pretty busy in the NICU that day, and we know first-hand what it can be like, so we weren’t bothered by it. Of course, they hadn’t done a blood draw on Dorrie for quite a while, so it was time to get a good sample so they could do all the kinds of tests they used to do on what seemed like a daily basis. Dorrie was again a good girl — she was mad when they stuck a needle in her hand of course, but she calmed down pretty soon afterward, aided especially by us logging into the hospital’s public wifi with our smart phones and streaming YouTube clips of Sesame Street songs for her. Oh, how she loved those.

Anyway, after that visit, it was down to speech therapy to get Dorrie screened for a Passy-Muir speaking valve.

This is one of those things we had been talking about for a while, but it wasn’t really a good option before. Basically, it is just a one-way valve that sits on the end of her trach so that she can breathe in through the trach, but can’t breathe out through it — so she has to breathe out through her mouth and nose. This in turn means that she can basically use her voice normally, for the first time since the trach was first put in. Not long after she made this discovery, she quickly started making it known — fairly loudly — just what her opinion was of having to sit in her chair for five hours straight and have strange people messing with her. So, it was time to break out more YouTube clips to keep her entertained, while Mom talked with the doctor and an RT about the options for using the valve: basically, either right on the end of the trach like in the picture, or using a different kind designed for using in a vent, which would let us keep her on extra oxygen with the valve in. We’re probably going to do a bit of both for now, but we’ll see how she does when she has the valve in and doesn’t have a sore butt from sitting around all day.

Anyway, that was our last appointment, so then it was time to go home. We again were hoping that she’d go to sleep, and all signs were that she was tired enough to, but no go — more like 45 minutes in this time, she started getting fussy again. Unfortunately, our plan for the day had included giving her some food after we got to the hospital — that went fine — and then giving her some more on the trip home — and that was probably not as good an idea. Sure enough, about 20 minutes from home, lunch came back up — aided probably by the fact that I inadvertently gave her too much water after the food, but mostly because she was just plain tired and pissed off, and wasn’t having any more of it. (Next time, we’ll have those Sesame Street clips stored on our phones, so we don’t have to rely on a wifi connection to use them when Dorrie-pacification is required.)

So, that was our adventure for the day. All in all, it was not a bad trip. I have to admit that while the assessment from Child Development wasn’t really a surprise, I hadn’t really formed a very clear picture in my mind of how we could expect Dorrie to progress, and hearing it spelled out made me temper my expectations a little. The good news is that medically, Dorrie is doing just great, and we can really focus on her development — and on that front, we’ve already made a good start, and things are going in the right direction. We just have to keep going, and keep doing everything that we can for her.

Posted by dad, under moving forward... or not, our little witch