13
February
2010
As was mentioned before, back in December, we had a plan for Dorrie’s grandpa and uncle (my dad and brother) to pay a visit around the holidays, but those plans were scuttled on account of flu. Luckily, the airline was understanding and willing to let them reschedule to a different flight, so instead, they came out to visit in January. And we have proof!
Who are these strange people?
It also happened that this was my birthday present weekend: for my birthday, instead of a physical present, Mom and Grammy stayed the whole weekend to watch Dorrie, and I got to go off and do whatever I wanted.
Grammy’s even still smiling. Of course, this was only Saturday:
All in all, I had a very good time during their visit. I briefly debated whether I wanted to have my birthday weekend coincide with their visit or not — after all, I would get to go out with them to dinner, brunch, etc. whether I was still “on duty” or not, so I could maximize my overall free time if I had my birthday weekend be on a different weekend. But then I realized that spending time with my family — which I otherwise never get to do, since I can’t exactly go out to visit them right now, and it’s a long way for them to go to visit me knowing much of my time is going to get taken up watching Dorrie — would actually be a really nice way to spend my weekend off. So Saturday night, we went to our favorite Irish Restaurant & Pub, The Peddler’s Daughter (and nearly got the rental car towed on account of not seeing the oddly placed “Reserved parking” sign in a lot a block away); and on Sunday morning we went to Michael Timothy’s for a medium-to-upscale brunch. I only wish we had had more time, and that we could do this kind of thing more often.
On an unrelated note, we have also been more proactive about making sure Dorrie gets more stander time. Our Monday-and-Wednesday nurse in particular has been wanting to get involved, so now she and I always put Dorrie in her stander in the afternoon while I’m working (I stop to help get her in and out, and she makes sure Dorrie stays entertained in the time between).
Piano prodigy? Time will tell:
(Even though it wasn’t related to the family visit story, it was such a cute picture I wanted to share it anyway!)
Posted: our little witch
10
February
2010
This morning the person from the ‘feeding team’ came down to visit again finally. She hadn’t been since last May, when she unfortunately visited right in the middle of a period of intense retching, gagging and throwing up while Dorrie was recovering from a course of antibiotics.
Of course, this time Dorrie slept through her whole visit and we all just sat and talked. However, Miss D is in a better place in terms of eating and it’s probably time to get that ball rolling again however slowly.
As chronicled before, but perhaps not mentioned very lately, we started introducing real food into Dorrie’s tube feedings at the beginning of last July. We went very slowly introducing new foods, giving her about 3 weeks in between to let her body adjust to something other than formula for the first time in a long time. As we introduced new foods we continued to feed her the old ones, which meant that for quite a while she was getting the exact same real food every day — a big contributor to her orange tinged skin. But now, finally, we are getting to the point where she has enough foods that we can mix it up.
More importantly, she has started tolerating much larger volumes (8oz at once without throwing up!) and this means that the real food feeds (still using Neocate as a base) can be made to contain enough calories that we’ve been able to cut back on her overnight food. And finally, last week, we took the plunge. No more overnight feedings!!
We’re still working to introduce additional foods (we need some more fats in particular), but so far so good. This month has been pukier than December or January, but not alarmingly so — she seems to be tolerating the change pretty well. Whether or not we have the calorie mix right is another question, because we’ve had trouble getting accurate weights at home. She seems skinnier to me, but it also may be because she’s lengthening out.
Posted: little fat fairy, moving forward... or not, our little witch
31
January
2010
In spite of not being able to talk, walk or sit up, Dorrie has definite preferences in terms of what she does with her time. When she’s especially excited about something, she practically dances on the ground in a movement extremely reminiscent of the Snoopy Dance.
This year’s winners of the Dorrie Choice Awards are:
Favorite Song
Nominees
C is for Cookie, vocals by Cookie Monster
ZYX, vocals by Daddy (sorry Johns)
The Alphabet Song, vocals by Mommy
I Hate Christmas, vocals by Oscar the Grouch & Ben Stiller
Winner
ZYX
Favorite Book
Nominees
Princess Baby, by Karen Katz
In a People House, by Dr Seuss
Hop on Pop, by Dr Seuss
Winner
Princess Baby
Favorite TV Show or Movie
Nominees
Elmo’s Christmas Countdown
Sesame Street
Plaza Sesamo
Prince of Tennis
Winner
Elmo’s Christmas Countdown (in a squeaker)
Favorite Toy
Nominees
Laugh and Learn Puppy aka Puppy
Go Baby Go! Bat and Wobble Penguin aka Penguin
Dreamland Soother aka The Princess Channel
Winner
The Princess Channel
Favorite Reflux Med
Nominees
Pepcid
Compounded prilosec
Zegerid
Winner
Zegerid (by a landslide)
Favorite Food
Nominees
Prune
Carrot
Winner
Not enough votes
Least Favorite Activity
Nominees
Trach change
Going to Sleep
Getting a shot
Winner
Tie
Dorrie registers a ‘no’ vote:
Posted: our little witch
17
January
2010
Last year for Christmas presents, I made a little book of 2008 with some text summarizing each month and lots of pictures. I made the same thing again this year, and now that nearly everyone has seen their copy (just one left to send out), I’m free to recycle the text in a lovely year in review post!
(For the interested, here’s a page that shows a preview of the books from 2008 and 2009. Ignore the bits about what to buy and just click on the ‘preview book’.).
January 2009
The year began with not a bang, but at least something nice: Dorrie had officially been home more days than in the hospital.
The rest of January was fairly quiet. Nursing coverage was stable and everyone remained well. Dorrie was teething quite a bit and her face was pretty chapped from all the drool that she kept getting all over her chin and cheeks.
She had started to show more interest in her toys, finally, at nearly 18 months actual. There was still not much effort to play with them beyond getting them to her mouth (and that was pretty hit or miss) but she knew they were there and that she wanted to eat them.
This month also saw Dorrie’s first real encounter with snow. I put some in a bowl and brought it inside to show her. She was highly suspicious at first, but curiousity got the better of her and her hand drifted toward it. Much to her dismay, it was extremely unpleasant to touch and worse, it stuck to her fingers making them cold!
February 2009
Dorrie’s interest in her toys continued to develop this month, as she suddenly discovered the joys of mobility. Still unable to sit or stand or crawl, she found it was possible to push herself around on her back. It was slow going, but it allowed her to see her small world from a new perspective and chase down toys which had gone out of reach.
We found this out one day before her bath, when we gave her a Christmas toy we’d held back — a Fisher-Price Little People airplane. Given her fear of large toys in the past, we were worried that she would not enjoy having this one. But I also thought she might like to bite the people, so we brought it out and stood the people nearby. The plane we put a safe couple of feet away. But she spotted that plane and lunged for it, taking us all by surprise.
She also started to show some interest in books, as we began to read more of them to her. It still wasn’t clear just how much she was understanding, but she definitely enjoyed the experience of listening, looking at the pictures, and being given attention by whoever was reading. She also enjoyed ‘reading’ on her own.
And, most exciting of all, she suddenly learned how to hug.
March 2009
March blew in with woes amongst Dorrie’s staff. Her overnight and sometimes day nurse had a family emergency and had to stop working most abruptly. It took us nearly a whole month before the agency was able to dig us up a new night nurse.
Otherwise, the month itself was was pretty average. Dorrie had her sleeping issues, which were compounded for us by the lack of night nursing. Toward the end of the month, she finally started to wean the PEEP on her CPAP — one tiny step closer to getting off the vent.
April 2009
April was another healthy month. Easter was uneventful, and Dorrie was in a mood to perform, so spent the day lifting her head up and scooting around on her back. She was also introduced to a new friend: Ducken.
While we all soon got tired of hearing him sing his chicken dance song, she found him endlessly entertaining. The only problem was that his activation button was too difficult for her to press on her own, so we had to keep pressing it to make him go.
Toward the end of the month, Grammy finally got one of her fondest wishes and was able, with daddy’s assistance, to take Dorrie for a walk in her stroller. The two of them packed everything up and rolled out, making their way down to the mailboxes and back. A few days later, we also dragged Dorrie and all her stuff closer to the sliding glass doors so she could see outside. Neither time was she especially enamored of the sun, though she did not find it as fearsome a foe as the dreaded SNOW.
At the end of the month, Dorrie celebrated an entire year home from the hospital.
May 2009
The month of May was a sickly one around here. Dorrie got an ear infection at the beginning of the month, and then mom got sick in the latter half of the month, followed by dad. Dorrie didn’t entirely escape either, and was placed on antibiotics.
Because of all the illness, there wasn’t too much else going on. Dorrie held steady and got through her infections with no major setbacks, and that was all we could hope for.
We were able to place some orders for new equipment for Dorrie this month, to give her more options for sitting and being supported in new positions. She also continued to show an interest in watching mom and dad eat and drink, especially in our cups. But this didn’t translate to wanting actual food or liquid for herself.
June 2009
The first bit of new equipment arrived in June: the stander. This is just what it sounds like, a contraption that allows Dorrie to stand up straight. She’s held in with straps and padding and has a tray upon which she can have toys while she’s busy standing up.
She also continued to outgrow her orange Tumbleforms chair which we had borrowed from the OT. But the new seat we had ordered did not arrive this month, and so we had to keep squashing her into the small one.
Due to the antibiotics in May, June was a retchy, pukey month compared to others. We made little progress on the nutrition front at all. A couple of small steps were made on the respiratory front, however, and by the end of the month, Dorrie was on a PEEP of 5, which is about as low as the vent can handle.
July 2009
Dorrie did a lot of standing in July, working on keeping her head up and getting used to the sensation of having a bit of weight on her legs. It soon became clear that with the assistance of her arms, she was actually quite good at keeping her head from flopping forward. Her endurance improved rapidly and soon she could spend an hour or so in the stander.
Her digestion also returned to normal, and so at the beginning of July she began to get some pureed food through her tube instead of formula. She started with prunes, and when those were a success, we added carrots and pears. She also started using her mesh feeder a little more frequently, after she figured out how to start scraping bits of carrot off of a larger chunk. The feeder kept the scraped bits from making her gag. She was also more agreeable to tasting other foods, as long as she didn’t have much to swallow.
She proved she had made some additional progress when, as the weather got hotter, she was able to endure her clothing. The cold mats and ice packs remained retired and naked baby did not return.
Dorrie spent her second birthday with daddy and grammy, because mom had to be out of town. She was forced to endure many forms of torture, including ink on her hands and ice cream on a spoon. Going down a slide also proved to be traumatic.
The next week, Dorrie received some sparkly purple hearing aids. When they’re first turned on, they play a little tune, and she found the sound of it hilarious.
August 2009
In spite of our intentions, Dorrie, since she lives right in front of the tv, sees a lot more of it than we would like. She began to get into Sesame Street over the summer, though it had always bored her before. She’s also a fan of anime, particularly “Tennis no Oujisama” (The Prince of Tennis).
We were able to add additional foods to Dorrie’s schedule during the month of August, as green beans, pears and turkey were proved tolerable. The introduction was going slower than we had hoped, but she was tolerating the real foods wonderfully.
Dorrie’s chair finally got to the equipment company at the end of July, but we weren’t able to get it adjusted and here until the second half of August. But what made this arrival even more exciting was the fact that we were finally able to get Dorrie off the vent for small periods of time each day. She was still attached to oxygen (along with her sat monitor and suction), but no more vent! We began with 30 minutes, then quickly went up to an hour. Things were astoundingly quiet in the house with the vent turned off.
September 2009
Now that Dorrie was finally spending some time off the vent and the weather was still good, it was time for a road trip. My grandmother, Dorrie’s only still living great-grandparent, had never yet been able to see her. So when mom’s work plans fell through on Friday when dad had already taken the day off, we decided it was time to go visit.
Grammy came with us, as an extra driver, Dorrie wrangler, and because her car was larger and more comfortable. We set out around 10am and drove to Clifton Park through several surprisingly violent rain showers. Dorrie was an extremely well-behaved little girl. We brought her new chair with us (great-grammy’s house has a wheelchair ramp) and were able to leave the vent in the car while we went inside. The cats were out of the way and we all gathered in the bright front room of the house.
Dorrie wasn’t entirely sure what to make of her great-grammy, but she seemed more curious than scared or upset. She got held, she played on the floor a bit, and then it was time for us to go again. We piled everyone and everything back in the car and then drove back to NH. It was a really long day, but it went as well as possible.
October 2009
The swine flu was in full swing by October, and vaccine was still nowhere to be found. We were on high alert for illnesses all month long, but fortunately they were avoided by us — the nurses weren’t so lucky and both were down for the count.
Dorrie finally tried out the swing, companion to the evil slide. The swing was less traumatizing, and she tolerated it for some time before she was taken out.
She also got another new chair, a bumbo-esque chair meant for older children. It has a high back and arms, which gives her a bit of support and helps her to sit in it with minimal assistance. It’s much easier to get her in and out of than the full blown rolling chair, though it’s probably not nearly as comfortable.
Dorrie began to get more and more opinionated over the fall, preferring certain books over others, certain tv shows over others, and wanting everything just right. One of the things she decided was just right was dad singing her to sleep. Mom, not so much, though she did find it amusing to listen to the alphabet song.
November 2009
In November, Dorrie’s sleeping schedule deteriorated to new levels of inconvenience. After growing more and more difficult to coax to sleep every night, both she and mom decided independently that they weren’t going to deal with that together any longer. Dorrie started staying up until it was daddy’s turn to get up, reinforcing his identity as Sleepy Guy.
But a girl who stays up until 2am can hardly be expected to wake with the dawn, and so Dorrie began to learn the joys of sleeping until noon. Since the morning was previously her time of greatest activity (due to it also being her time of empty stomach), this started to cause problems. Her use of her stander and her chair plummeted during this month, as she would wake up just in time to eat her lunch. Several times she had to be woken up to participate in PT or OT.
The introduction of real food continued, and in November Dorrie added sweet potatoes, apples and corn to her diet. The RD finally arranged a visit, and we started to come up with a plan to eliminate the nighttime feedings.
Dorrie was increased to 6 hours a day of time off the vent, which she took in stride. She also finally received her first cuffless trach, and so every other week was suddenly much more able to find her voice.
After some more ridiculous vaccine drama, the month ended with Thanksgiving and the return of the Christmas tree to Dorrie’s living room.
December 2009
December started off very well: Dorrie officially rolled over for the first time, from back to front. She had managed to flip herself quite a few times, but this time was different because it was very clear that it was deliberate. She pushed herself up onto her side, and investigation revealed that she was looking quite pleased with herself. So after making sure none of her tubes were going to get pulled, she was let to do what she wanted. Slowly, she eased over the rest of the way to her stomach. And then, the clincher, she struggled until she pulled her trapped arm free so she was fully flat.
It also seemed to us that she was beginning to understand some of the signs we’d been working on with her. After many months, she seemingly understood the sign for ‘book’ and for ‘all done’.
The rest of the month was quiet. Quieter than we’d hoped, actually, as we’d been anticipating a visit from Grandpa and Uncle Steve that had to be postponed due to illness in WI.
Dorrie was increased to a total of 8 hours off the vent each day.
As can be seen in the pictures from this month, Dorrie’s diet, heavy on orange veg, started to lend a distinct hue to her skin which became very visible around Thanksgiving and after.
Posted: little fat fairy, moving forward... or not, our little witch, trying to stay healthy
27
December
2009
Since Dorrie was born, holidays or other dates of significance are incredibly fraught. Day to day, there is a constant underlying worry that she’s going to get sick, that she’s going to end up in the hospital. But when a holiday is coming up, that feeling becomes magnified: what if she gets sick on her birthday, or Thanksgiving, or Christmas. And so all of the days leading up to the dread date become filled with this extra level of stress.
Happily, Dorrie did not get sick for Christmas, but we still have New Year’s this week to contend with before any relaxation can occur.
Our plan for Christmas was for Dorrie to visit my mother’s house. Though she lives a mere hour away, and she visits us nearly every Friday, we have managed very few visits to her. Since Dorrie was born, I’ve been there three times, Dorrie once, and Bob once. Our schedule at present just really does not permit a lot of outings.
We waffled on how the visit would occur: should we try to go over Thursday evening and spend the night? Or should we visit only on Friday? Complicating matters was Dorrie’s newly declared preference to sleep from 2am – noon. No doubt genetic (that’d be my preferred schedule too, if I could swing it), it’s proving extremely difficult to inch her back to an earlier wake-up time. Travel on Thursday night thus had at least that much going for it, but little else — spending the night would require transporting extra equipment that we don’t need for a day visit. In spite of the transport problem, we were leaning toward Thursday until we chickened out at the last minute. We just couldn’t bring ourselves to be away from our supply base. Maybe in a few more months we’ll be ready to try it.
Dorrie slept until about 11:45. We started trying to move things out to the car as much in advance as possible, but quite a lot of the stuff needed to be moved at the last minute. This was also our first outing with the new car seat we purchased back in October — the first time Dorrie was carried out of the house not already installed in her seat. She’s relatively easy to carry, but she’s not able to help get herself into a seat so it can be difficult to get her arranged, especially at an awkward angle. In the end, it took us an hour to get ourselves packed up and on the road.
The new car seat means dad and mom can finally share the driving duties (the other seats were in the center of the back leaving space enough only for mom to squeeze in with the vent and oxygen) so daddy got to ride with Dorrie in the back. The ride was uneventful and getting into Grammy’s house was not quite as tricky as getting out of ours. Dorrie was pretty nervous; she hasn’t left the house in months and when she has, it’s always been to the doctor’s where unpleasant things happen. But Grammy was there, and no one tried to stab her, so she calmed down, especially after we put her in her chair.
[At the dinner table]
Because we got there so late (it was 2pm by that time) we ate almost immediately upon arrival. Dorrie sat with everyone at the table and got her own much delayed lunch (via tube). The food was good, and it was a much more typical Christmas dinner than we had last year. (Right down to Uncle J1 racing out to the living room every 3 minutes to check on the Celtics and Uncle J2 texting under the table). After dinner we all went back out to the living room so Dorrie could open her presents.
[Obligatory Elmo]
[One of the middle presents]
Dorrie got lots of neat stuff and so did we (wii). She got a bit overwhelmed after a while and stopped really paying a lot of attention to the toys that were appearing, but she played with a couple of them and seemed to be enjoying herself.
[A little overstimulated]
[This wasn't a toy]
Eventually, everyone else left to go to the movies and we were left to finish packing up Dorrie and her stuff to get going home. Unfortunately, the return to her car seat caused enough stomach squishing, burping and coughing that Dorrie threw up her last meal of the day and so we left a gross gift for Grammy slung over the railing of her front porch. (Dorrie had given grammy laundry detergent for Christmas.)
Dorrie did her usual fall asleep at the last minute trick in the car, leading to a 20 minute nap for the day. By the time we got home, got everything into the house and gave her her bath, she was wiped. She fell asleep before 11pm, the earliest she’d slept since probably October! A real Christmas Miracle.
[... which lasted until 3:30am when she suddenly had to poop and woke up again for an hour and a half. But it technically wasn't Christmas any more at that point.]
[A new hat]
[Hentai Hello Kitty]
Posted: moving forward... or not, our little witch
3
December
2009
As many know, Dorrie has, on occasion, managed to flip herself over. The first time was months and months ago, but as far as both Bob and I could tell, none of this was deliberate, nor was it repeated soon enough for it to be clear she understood how she had accomplished it.
So even though we were both longing to declare that she had rolled over for the first time, we did not consider that milestone to have been met.
But I’m going to declare it met as of 1am on Wednesday, December 2nd.
I was typing an email when I heard Dorrie make a noise and looked over. She had rolled herself up onto her side and was slowly tipping forward, her left arm trapped underneath her body. I leaned over to see her face and as she appeared pleased with her new position and none of her tubes were being pulled, I did not attempt a ‘rescue’. Over the next few minutes, she managed to get herself more flat on the ground and then, after some very determined struggles, yanked her left arm out from under her tummy.
It was the latter that decided me: she meant to do that.
My only regret is that I was so busy watching her that I didn’t think to grab the camera!
Posted: moving forward... or not, our little witch
