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
7
February
2011
One change we made when we started having Dorrie sleep upstairs was a rededication to sticking with her feeding schedule during the day. When she was downstairs it was easy to let it slide — by the end of the day, we were off by as much as 2 hours, and she’d be getting her last meal, scheduled for 9pm, around 11pm. But we as we would much prefer her not to throw up upstairs (so much harder to clean on carpet and bedding!), she needs to be done eating for at least 90 minutes and preferably 2 hours before she’s allowed to go up to her room. So in the interests of getting her upstairs before 3am, adherence to the schedule is at an all time high.
How is this relevant to Christmas? Well, as her predilection for puking means that she needs to have an empty stomach when she gets into her car seat, the promised visit to Grammy’s house required some serious thought as to scheduling. We eventually determined that the best choice would be a 24h visit — arrive around noon on one day, and leave not later than noon on the next. That way a full feeding cycle would take place at Grammy’s house and we could depart before the next one began.
After some discussion, we decided that we’d go over to Grammy’s at noon on Christmas Eve, spend the night, and leave at noon on Christmas Day. It would be the first time Dorrie has ever spent the night somewhere other than our house or the hospital, and it required quite a bit of advanced planning!
Early in December, we did our first test: could Dorrie manage a whole 36 hours without humidification. Our lives would be made much easier if we didn’t have to bring along the humidifier unit that goes with her ventilator. So we tried her out at home, and though she was pretty suction-y by the time it was bedtime on the second evening, she did fine. Check.
Then we had to consider the sleeping arrangements at Grammy’s house. Should Dorrie sleep upstairs? With whom? Sleeping with either mom or dad would relegate the other parent down to the sofa. Sleeping with Grammy would mean mom and dad might have to get up a bunch of times anyway. (We don’t allow her to sleep on her own — she has such poor control over her arms that she tends to knock her tubes apart or accidentally grab at her trach/vent tubing/g-tube while she’s sleeping, and it’s much easier having someone right there to stop her before she injures herself.) And where would the vent go? Did we need to bring the IV pole it usually stands on?
Anyway, with much trepidation and two very stressed parents, we packed up Miss D and headed over to Grammy’s house on Christmas Eve. We got there in good time, got Dorrie eating her lunch, and then sat down to ours. Unfortunately our meal came a little soon after hers, and getting put into her chair didn’t sit very well with her stomach — so we got to clean up some pukies before eating.
That was really the worst mishap of the day, though. The afternoon and evening were very pleasant and Dorrie, though occasionally fussy due to being tired, was a pretty good girl. It was a real relief to know that we didn’t have to pack up and go home still that night, even though both of us were pretty nervous about the night to come.
Dorrie fell asleep downstairs and as it had been decided that she’d sleep with Grammy, we brought her up there and got her settled in to bed with her suction machine and her vent sitting on one of the dining room chairs. She seemed pretty well asleep at that time, but she woke up after a couple hours and decided to have a long babbled chat with Grammy (which we got to listen to over the monitor). Eventually daddy went and got her some melatonin and she quieted down and went back to sleep.
She got up very early (for Dorrie) in spite of the poor sleeping the night before, so we all went downstairs and opened gifts.
After that, it was time to go! We got home so early, everyone had baths, and mom and dad ordered Chinese food. Even though it was a good time, we decided that next year, Christmas is going to be at our house. So much easier for Dorrie to be at her base of operations.
[Dorrie's first gift]
[Uncle Jeff's guinea pig came over to have a visit.]
[Dorrie thought Mello was very interesting, and kept trying to touch him.]
[Mello, tired of having his butt smacked, looks for an escape route.]
[Safe!]
[Dorrie takes a rest after the first round of opening presents.]
[Having fun with Uncle Jonathan.]
[Reading a new book with Grammy.]
Posted: our little witch, tales of interest
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