26
November
2010
So, Thanksgiving!
The last couple of years, Thanksgiving has been a somewhat annoying affair, with the meal coming as it does in the middle of Dorrie’s eating period. So the first year, we stayed home so as not to get horribly off schedule, to avoid germ exposure, and for general sanity — I believe I went over to mom’s house for dinner and then she and I both came back here so Bob could eat. Last year we were still in swine flu lockdown after all the drama trying to get Dorrie her shot. So we pretty much did the same thing.
This year Dorrie seems much stronger, is rather more flexible in her food schedule, and is generally more easily portable for us. So we decided to resume a previous tradition, which was to go out to a buffet on Thanksgiving. Pros: no one has to cook, no mess to clean up; Cons: no leftovers. But the Pros are really good ones. We found out about a buffet here in Nashua and made early reservations so we could get in and out without being too crowded.
The plan worked out fantastically. We got in, got our seats, took turns going up to the buffet. One might have wished for a bit more variety in terms of vegetables, and maybe a slightly higher quality cut of beef, but overall it was really good and there was plenty of food.
Uncle Jeff and Uncle Jonathan came too.
Uncle Jeff had plenty of time to text people.
Dorrie chewed on some turkey.
She chewed it up good.
After the meal, the boys headed off to do their own things and Grammy came back with us so we could start shifting things around in the living room. But first we tried to take some pictures of Miss D in her reindeer hat. Unfortunately most of the ones taken with our camera came out kind of blurry for a variety of reasons, so we had to make plans for a second photo shoot at a future date.
Then we did a bit more work on her room, namely pulling all the garbage bags and tape up which were protecting the wainscoting and the carpet while we were painting the mural. In the living room we moved the oxygen tanks out of the way (they’re coming Wed to pick them up), moved Dorrie’s toy bin (aka the pack and play) out of the way, moved some bins of medical supplies out of the way (sensing a theme?) and put up the tree. There were a few concerning moments right after we plugged it in — some of the lights didn’t come on, so we thought we might have to go out and get a new one (it’s a pre-lit fake tree which is about the same age as Miss D. It’s also very low end, so it’s probably in its twilight years.). Fortunately after they warmed up a bit most of the lights did come on, so we deemed it good enough to decorate.
Dorrie was fascinated by the tree when it appeared, and spent a good portion of the afternoon just staring at it. I’m sure she couldn’t fathom why the heck a tree had appeared in her house.
Today the cleanup and decorating continued, with the end result that we got some lights up outside and the living room looks like a disaster area. I hate that a big clean and declutter always starts off by making things way worse than it was!
Posted: moving forward... or not, our little witch, tales of interest
26
November
2010
Another long delayed update.
First off, as hasn’t been mentioned here, November is Prematurity Awareness Month. I don’t really hold too much with ‘awareness months’, because generally they’re about something that most people are already quite aware of, thank you.
But in this case, aware of doesn’t really mean understanding. So I thought I’d link to the post Eliza Grace’s mom Anne wrote earlier in the month. She does not overstate the situation; if anything, the impact can be far worse than described.
Now, on to less depressing subjects.
Nurses Eleven and Twelve are still with us and things are going good with them. We’re especially pleased to have a reliable competent day nurse (Twelve), as this is quite a novelty for us. In fact, it’s the first time EVER that we have had such a person in the over two years we’ve been home.
The agency had called a couple weeks ago to say they might have found us another nurse to cover one more night a week (a search that has been ongoing for months now). However, this elusive person was supposed to come for a meet and greet a week ago and this did not occur, so I’m assuming they have disappeared again in a puff of smoke.
* * *
At the end of October, we finally decided to take a big step and trial just how long we could go without any supplemental oxygen at all. It appears the answer was idefinitely, as we haven’t had to turn it on again since!
Dorrie had an appointment with Doctor Optimist the day before Thanksgiving, and she issued new orders to the nurses that we need only do spot checks with the pulseox during the day (mom and dad, of course, were long taking it off when it was getting annoying with all the movement-induced beeping). A couple days before that I had spoken to the RT from the vent-supply company, and we both agreed that it’s just silly to have giant tanks of liquid O2 sitting around evaporating just in case we need them, so they’re going to come and take the tanks away. We’ll continue to have pressurized O2 tanks in the house which we can use in an emergency and for long enough that if we needed longer-term O2 back they would have time to arrange a delivery.
* * *
Back at the beginning of the month, my mom’s sister was visiting for the weekend, so Grammy and Auntie Grammy came over and we all went out to lunch. Dorrie was extremely well behaved, and sat contently in her chair while we ate, just looking around at everything in the restaurant.
* * *
Dorrie’s school has been going okay, though November and December are both terrible months, with lots of random holidays and days off. The schedule, as a result, has been thrown into chaos with teachers coming randomly and needing to reschedule at different times. For the most part she hasn’t missed too much, but I’ll be glad when things settle down again.
Her new favorite activity is to draw (with a lot of assistance) with markers on a whiteboard. She gets very excited when she sees the colors appear on the blank white board. I was at work the first time they did it, but apparently she became very upset when they took out the eraser and tried to get her to help them erase the scribbles she had drawn. She’s definitely getting more opinionated about when she’s done and not done with an activity — more than once she’s gotten visibly upset when something she was still interested in playing with is taken away. And she’ll also get upset when she’s left with a toy or activity she’s tired of doing. Unfortunately, she’s still not able to tell us exactly what she wants, so we’re left with presenting her choice after choice until she finally settles on what she’s looking for.
* * *
We finally got her stander adjusted to accommodate her increased height, so she’s been trying to use that again. The stander is more difficult than the chair, since she has to do more work, and it can be harder for the person with her to engage her attention on an activity — a lot of the time all you can do is try to convince her to hold her head up.
Everyone keeps saying she’s improving, lifting her head up more, getting stronger. But there hasn’t really been any significant progress along those lines that I can see. Maybe I’m just waiting for a dramatic change to convince me, but we certainly aren’t there yet.
* * *
After not being able to work on it for pretty much the entire month of September due to everyone being sick, we redoubled our efforts this month to finally finish up the painting project in Dorrie’s bedroom. We really want to get her sleeping upstairs by the end of the month.
The painting project is pretty much finished now; maybe a tiny touch up here and there will be needed, but we’re going to let it sit and we can see what imperfections bother us and which ones we can overlook.
It came out so much better than even I had expected it would, and I knew (as Grammy didn’t) how good of an artist Bob was. He did a fantastic job sketching out the scene and then transferring the outlines to the wall. And an even more excellent job on the detailed areas that I didn’t even want to touch. Once the room is totally done (we’re now in the process of tidying and organizing the medical supplies) I’ll put up a better series of pictures.
Posted: moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
2
November
2010
Before Dorrie was born, we had quite a few trick or treaters on our road. We live in a large development that’s pretty much all townhouses with a few one-level apartments thrown in. A lot of dwellings really close together, in other words, so it seems like it would be ideal for candy. But the past couple of years we’ve had hardly anyone show. This year we had a grand total of 6. I can’t justify buying a lot of candy for 6 people!
Anyway, pretty much all the homes in the development have steps up to the front door, so Dorrie can’t get up there in her chair. As a result, we decided against trick or treat again this year. I hadn’t really intended to even bother with a costume, but I changed my mind at the last minute and so we had the return of Tinkerbell. There is still glitter all over the house.
We took over 200 pictures of her in this costume and this is one of only two where she’s smiling. (To be fair, Grammy and the nurse had an earlier photo session while we were at work and she smiled in a few of those, too.)
Pre-Halloween, Dorrie has been feeling pretty much herself again, and so far is tolerating the hemp milk and honey pretty well. She was exploring on the floor one night when she ran into daddy’s feet and had to find a way around them.
Where was I?
PT has requested that we spend more time with Dorrie holding her head in the center. When she’s unsupported on her back she likes to allow it to tip right or left, which is not great for the neck muscles when done constantly. Since we haven’t started using her bath chair for baths yet, it’s a good place for her to sit and watch some tv. Dorrie approves of any therapy where she gets to watch Sesame Street.
She also finally had her rescheduled visit to neuromotor clinic today, where by all accounts she did great. (It was daddy’s turn to go to this appointment, so I wasn’t there in person.) She had to have an x-ray of her bones and skeletal structure just to make sure nothing was going wrong with her growth. And growing she has been — a whole inch and a half since July!
She is long.
Posted: little fat fairy, moving forward... or not, our little witch, trying to stay healthy
