27
April
2011
Many pictures backlogged, including great-grammy’s 90th birthday party. But otherwise things have been on a pretty even keel for the past few weeks. The pukies continue to be at a low ebb, the teachers have been coming (mostly) when they said, and nursing has been very stable.
We’ve been making a lot of plans for the summer, with the intention of getting Dorrie out of the house a lot more than she has in the past. The first step was to be Easter, where Dorrie would join all of us for a meal out and then visit Uncle Jonathan’s house (which none of us have ever seen, in spite of his having moved there 3 years ago.) Unfortunately, Dorrie developed a fever on Saturday night (Just a titch under 100 — but even that slight of a fever shot her heartrate up to 150) and had a very poor night sleep-wise as a result. So we postponed Easter and stayed home instead.
So far she seems to be recovering without any major issues. Fortunately it’s April vacation this week, so she hasn’t had to miss any school and we’ve been able to be very flexible with her sleeping and eating schedule.
The next scheduled event is Thursday — first non-mom haircut. Her hair is incredibly long now, but a huge mess. She’s constantly getting her fingers stuck in it, it’s in the way when we go to change her trach ties, and it hangs in her eyes. So it needs to come off. If she gets better head control we can think about letting it get long again, because then we’ll be able to tie it back. Right now any ties just get rubbed off immediately as she slides her head around on the floor.
Posted: moving forward... or not, our little witch, schoolhouse rock, trying to stay healthy
28
March
2011
When we heard about great-grammy’s 90th birthday party, we weren’t sure if we could make it. We weren’t ready to make an overnight trip so far away from our house, and though we had driven there and back once before (it’s about 3.5-4h one way), it wasn’t an attractive proposition — especially since Dorrie has grown far more opinionated over the past year about how long she’s going to be happy in the car.
But since people don’t turn 90 every day, we did want to make the effort if we could. Our day nurse agreed to come with us on Saturday, and having a third person around who could watch Dorrie on her own proved to be a very big help.
We left around 9am, all of us packed into Grammy’s car with a load of supplies to try and keep Miss D entertained for the length of the trip. Unfortunately, she was none too pleased about being put into her car seat and driven away, and eventually we had to pull over to give everyone a break from her anger. She got out of her car seat and sat in mom’s lap for a few minutes, which seemed to cheer her up considerably. She was also pleased to watch some Sesame Street videos on mom’s phone after she was returned to the car seat.
The party was at a function hall I had never been to (but then, the number of places I haven’t been in the area are nearly infinite compared to the few I have), but it was nice. We got there before almost everyone and were able to claim a table in a far corner. We set out some of her floor mats and let her lay down and play.
After a while we untied one of the helium balloons that were around as decorations and tied it to her wrist. She had played with a balloon in school, though it was just one filled with regular air — so it didn’t float. This one floated and bobbed and Dorrie found it extremely interesting.
So did her cousin E. who was perhaps more intrigued by the balloon than he was by Dorrie — he soon had about 5 balloons tied to each wrist in an experiment to see if he would float away. Dorrie also had a chance to meet her great-uncle Bill for the first time, and some more of mom’s cousins.
Great-grammy made her entrance at the appointed time, and her table was a very hopping place. People were coming over to say hello and congratulations and as you can see, it was tough to get everyone’s attention at once!
Dorrie was not too thrilled by the food, but the rest of us found it very tasty. But by the time we rolled out she was starting to get tired, even though she’d been quite happy to play around on her mats. We all hoped she’d nap in the car on the way home, but though she fell asleep briefly, it was not enough. She was soon awake again and displeased to discover she was still driving. We all took turns holding the phone where she could see it so she could watch the Sesame Street 25th Anniversary Special over and over again.
Posted: moving forward... or not, our little witch, tales of interest
19
March
2011
Things have been both busy and boring around here, both of which are good, but don’t make for much to post about on a day to day basis.
Dorrie has been doing well with school, and we’re currently beginning the process of working out her IEP for next year. The school has recommended/approved that she continue to get the same services over the summer session as we have during the regular year. I’m not positive that she’ll have the exact same therapists (my impression is that the school district only employs a few over the summer) but I’m hoping.
The big change may be next year, when we’re tentatively hoping to let her actually go to the school at least once a week. We’re still in very preliminary stages of talking this over, and it depends a great deal on what the doctors think and how the nursing works out, but I’m hopeful that it will come to pass. The idea of exposing her to the germs of a dozen or more little kids makes me extremely nervous, but it has to be tried at some point.
I’ve also asked her school PT if she has any thoughts on equipment that would be FUN but also work within the somewhat cramped confines of our townhouse. We have very low ceilings and no yard space, which makes many of the better things (such as a freestanding swing) difficult. And the equipment we have, the stander and the chair, while useful and theraputically important, are not really fun in and of themselves.
* * *
I’m also pleased to report that Vomit-Fest 2011 has gone on hiatus. After upping her zegerid, eliminating several items from her diet, pausing her food after 6oz for about 10 minutes, and being sure to vent her stomach and press around on it to get all the air out before the food starts, we seem to have landed on a combination of protocols that is working! We’ve now gone four weeks with only one pukie, a new world record!!
Posted: moving forward... or not, our little witch, schoolhouse rock
18
February
2011
Looking back, I don’t often write about our day to day activities. Our days are all very alike. A while ago I had started a post detailing a day pretty much minute by minute, but it really wasn’t coming out as I’d hoped. But it might be time to try that again.
* * *
Dorrie has several favorite TV shows, but by far her two favorites are Angelina Ballerina and anything Sesame (This somewhat extends to all Muppet shows, as she quite liked Fraggle Rock as well, but we generally have a pile of Sesame Street, Play With Me Sesame, and Plaza Sesamo saved on the Tivo.) At the urging of one of my friends, I’ve started watching Top Chef this season, so everyone at our house was pleased to see the summary of this week’s upcoming episode. A cookie challenge! And, of course, to judge a cookie contest, you must go to the world’s cookie expert: Cookie Monster. He brought along two of his friends (Elmo and Telly) and Dorrie was overjoyed to see them all appear on what I’m sure she thought was a boring mommy and daddy show. She went absolutely bananas, laughing and wiggling and trying to flip herself out of my lap.
* * *
Dorrie is a biter. I’m sure it’s a sensory thing; the fact is, I’m a biter too — I’m always chewing on stuff. Pen caps, fingernails, it’s endless. I don’t even realize I’m doing it. Sometimes gum helps. In any case, Dorrie has the biting gene, but not the understanding that biting people (including herself) is not nice. It can also become a problem while she’s having school, because there’s a fine line between Dorrie chewing on something for a few seconds and Dorrie completely frantic to chew on everything to the exclusion of all else. Plus, some of the school things are not good for chewing on.
Today during PT, one of the activities we did was for her to sit supported in the PT’s lap while we helped her to draw on a dry erase board. She chose between two markers and I helped her draw with the red marker for a while. Her attention started to wander, so we stopped and asked if she wanted more, or if she was all done. She didn’t really seem to have an opinion, so we offered her a choice of two colors again, and she picked the green marker instead of the red. The green pleased her much more, and she allowed her hand to be supported to draw for quite a while, watching the board intently and smiling to herself. [She was looking so adorable while she did this, it was killing me that I didn't have the camera or a hand free to take her picture.] After some time, I took the marker back and asked her again if she wanted more. We thought she was indicating she wanted it back, so we started drawing again. This time she had more of an idea of where she wanted her hand to go and started inching it down the board. Then her head began to tilt toward the marker and her mouth opened oh so casually — she wanted to bite the cap.
I took the marker away and said it was all done, since she just wanted to bite it. And she started to laugh, quite obviously pleased with herself for having tricked us into thinking she wasn’t done drawing.
Posted: moving forward... or not, our little witch, schoolhouse rock
17
February
2011
So after Christmas things were normal for a week or so.
And then the pukies began. It was an instant return to the bad old days, with mom and dad hovering nearby with a bath towel, ready to capture the inevitable. Tempers were frayed. Everyone was tense. Even Dorrie, who is normally extremely cheerful, was crabby and fussy.
We couldn’t figure out what was going on. We hadn’t made any real changes to her diet that could have caused it, as far as we could tell. But the whole household was on edge.
January was a horrid month. We had a mere 6 puke free days, most of which were toward the start of the month. The other days tended to have 1-3 pukes apiece.
Bob’s theory was that the Neocate we were using was ‘stale’ (we had opened a box due to expire in March 2011).
I thought that the dry air in the house (which had wreaked havoc with my own skin) was making her cough more and was aggravating her reflux.
So we switched to newer formula cans and bought a humidifier for the living room. And things seemed to improve for a couple of days before they went down the tubes again.
We gave her a good deal of extra prune juice in case she was constipated. We managed to convince the doctor to increase her Zegerid dose.
We took her to the ped’s office (someplace we avoid like the plague in the winter, due to the potential for, well.. plague.) to see if she had an ear infection.
One night, while she was sitting in my lap, her tummy started to make a strange gurgling noise. Then we could hear her swallowing, and after a moment or two she threw up. We got a syringe out and vented her g-tube and a huge amount of air came out of her belly. Where did it come from? We have no idea.
So now added to the routine is to vent her stomach /and/ sit her up to burp before starting a meal. We’ve also had to start stopping the food in the middle to give her a few minutes to digest.
But we still don’t really know why any of this changed. At least, cross fingers, it may be improving again. But I hate that we’re back where we were a year and a half ago. That we’re once again having to be super cautious about moving her around, that we’re following her around with towels, jumping every time she opens her mouth to yawn. Her disabilities already make it so incredibly difficult to do anything with her, having to take all of these precautions to keep her from vomiting just makes it impossible.
Posted: little fat fairy, moving forward... or not
6
February
2011
As has been pointed out to me by more than one person, we haven’t updated here in quite a while. Part of this I put down to our terrible internet connection — uploading pictures is a time consuming process — and part of it I put down to the new camera we purchased over the summer (when you have rapid shot picture taking, suddenly instead of a couple dozen pictures, you have a couple hundred to sort through.)
And then, in case another excuse is necessary, I thought Bob was going to make a post. But he didn’t.
At any rate…
We last left Miss D right after Thanksgiving. She was off of oxygen, and was doing quite well on the non-puking front.
The weekend after Thanksgiving, we moved the vent upstairs, and Dorrie started using her room to sleep in instead of sleeping in the living room. She was thrilled with her bed, and she’s continued to be so over the past few months — she’s always happy to go upstairs and get snuggled in, even if she doesn’t always go right to sleep. But sleeping, at least going to sleep, has also improved.
Next up: Christmas. With pictures.
Posted: moving forward... or not, our little witch
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
25
October
2010
I see it’s been more than a month since I posted here. Bad me.
Well, let’s see.
Not too long after I last posted, I came down with a cold. It was an odd sort of cold — I could tell I was getting sick for almost 3 days before it really got awful. We went into our usual sickness mode, where the sick person is isolated from the rest of the house in hopes of sparing everyone else the illness. I spent from Tues night – Saturday morning in our bedroom with only a wee bit of time out (mostly on Thu, when Bob had to go to work to deal with a meeting he couldn’t miss). By Saturday I’d gotten worse and was coming through the other side, so I went back to work and we resumed normal operations, mostly.
By Tuesday, Bob decided he was getting sick in spite of all our precautions. Turnabout was fair play, so he retreated to our room and I took over downstairs. The illness took a slightly different course with him, and seemed to linger longer. And even more unfortunately, it was clear by the end of that week that Dorrie had picked up something as well. We had an appointment up at DHMC on Friday anyway, so we (me and the nurse) took Dorrie up so everyone there could have a look at her. The verdict: her lungs sounded clear, but one ear was possibly red, so we came away with an Rx for amoxicillin which we were to fill only if she seemed to be sick.
Sunday she was really fussy and angry, especially while trying to sleep; even though we had a nurse, I ended up sleeping with her most of the night to keep her calmed down. We called in sick to school on Monday, Tuesday’s teacher tends not to show up half the time anyway (she didn’t this week either) and by Wed she was still a bit subdued but clearly recovering. So while stressful, we were fortunate to get through the cold with just a few nights of poor sleep and four days in a row of pukies. (We put her on reduced feeds for the rest of the week after that.)
Once she was better, we had an amazing run of 17 puke free days!!
As a reward, we’ve started trialling hemp milk and honey as potential new sources of calories.
School is continuing pretty well, though it’s been a rare week when some teacher/therapist or another hasn’t needed to reschedule. We also started private PT again last week, after literally months of trying to get it properly approved. I’m still holding my breath in expectation that someone’s going to send us a bill for it.
And speaking of something that’s taken literally months of wrangling to get finished, the RAMP was finally installed a week and a half ago!! Of course, it’s now the rainy cold season here, so we probably won’t get a whole lot of use out of it until spring, but as long as the idiot snowplow guys don’t break it over the winter, we’re good to go.
(Note: The windows in these pictures are not ours. Unfortunately the configuration of our townhouse means that literally the only logical place to put the thing required it to snake down in front of someone else’s unit.)
On deck for this week: our furnace guys are coming to install the optional humidifier so hopefully the air in our house won’t be so dry this winter. We’ll see if that improves Dorrie’s suctions when she’s off the vent. And maybe my dry skin… but if I had to pick, I’d vote for the former.
Posted: insurance drama, moving forward... or not, our little witch, schoolhouse rock
