26
August
2010
I keep noticing that we haven’t updated here in a while, and thinking about what to write, but then I’ll remember I didn’t upload any pictures yet and the minimal amount of effort that would take just causes me to put it off again.
But now it has been nearly a month!
Still no pictures (they exist, but not online yet, unless you happen to be Facebook friends with my mom). I can’t let that stop me forever, though.
So the first half of the month was pretty unremarkable. I can’t really think of anything to report from it with respect to Miss D.
* * *
Summer school ended a couple of weeks ago, and the regular term will begin next week. In the meantime it has been very quiet here with no therapy at all. It was a nice break, but we’ve decided to see if we can manage to get some private PT on top of the school provided stuff. It all seems to hinge on whether or not our PT from EI is on medicaid’s approved providers list. We await the answer to this million dollar question whenever medicaid decides to get back to us as they’ve promised to do. (Or we give up on this and call them again.) Why medicaid? Well, because our super awesome primary insurance does not cover PT at all except for “acute” cases, which D would not be.
Meanwhile, we are still in the process of attempting to get a wheelchair ramp outside of the townhouse. The condo association approved this back in June and the intervening time has been spent trying to get the service coordinator from our Area Agency to actually return our calls. We have finally hit upon the solution that he seems to answer his phone if you call him right when he arrives at work, so some slight forward progress has been made in the past couple of weeks. I estimate that the ramp should be ready just in time for the first snowstorm.
* * *
This summer Dorrie has made some significant progress at weaning. She is now completely off of supplemental oxygen for much of the day. I’d like to say that her continued progress towards being a ‘wireless’ baby has made us more mobile and free, and to a certain small extent it has, but it has also made something quite clear to me which I was obviously blocking out. All along I’ve been telling myself that our lack of activity and ‘getting out’ has been related to the difficulty of transporting Dorrie and all of her equipment. As the equipment becomes less of an issue, I now know this is not true at all.
In fact, we have ended up like this because of her vomiting issues. Practically our whole day revolves around her feedings and the adaptations we’ve made to prevent her from throwing up. We are very successful at this! Since we eliminated the goat kefir from her diet, we’re back to our blissful 1-2 pukes a week schedule. But this comes at a cost: moving her around with a full stomach is completely a no go. She can play on the floor, but it’s risky to pick her up before an hour has passed, and forget about a car seat for at least two. Since she has 4 meals a day spaced at least 2.5h apart and is awake (or napping — g-tube means she can eat when she naps) generally for 11-14 hours, you can see how this severely limits the time available to do anything!
I’m honestly not sure what to do about it, however. We could attempt to condense her calories into 3 meals instead of 4, opening up more time between the meals. This is probably theoretically possible, but her liquid volume is pretty good right now and I’m not sure I want to mess with it in that fashion. Letting her puke more isn’t really an option. I guess our best hope is to just keep waiting and hope that over time it won’t be as necessary to be so hyper vigilant. Things have improved tremendously; before, even with all of the vigilance we were still getting meals returned every day.
* * *
Sunday the 22nd marked the first time Dorrie actually laughed at something I said. We were watching the Food Truck Race on Food Network, and the preview showed the teams getting handed giant slabs of unbutchered meat. So naturally I pointed this out to D by saying ‘mooooooooo’. She found this absolutely hilarious and continued to laugh each time I said ‘mooooooo’ for quite some time after that. She was actually sitting in my lap at the time and facing away from me, so I know she wasn’t just responding to my face.
The joke was no longer funny by the next morning and she hasn’t responded like that again to anything else (yet). Auditory Dissynchrony/neuropathy is such a sucky diagnosis. It really tells you absolutely nothing about what she can and cannot hear and is and is not hearing. Communication is a big problem.
* * *
We took advantage of school vacation to make a visit to Grammy’s on Tuesday. It sounds less complicated than it was, unfortunately. Last fall we sold our second car, since with nursing being what it was and D being what she is, we can’t really ever leave the house at the same time unless she’s with us. Plus, though Dorrie hasn’t done anything really scary for quite a while, I still wouldn’t feel comfortable driving with her alone in the back seat. She often needs to be suctioned and sometimes needs to be reminded to keep her head from slumping forward.
So after Bob went to work, Grammy came over and got us in her car and we three drove back to her place. We stopped for a bit where she works so she could introduce D to the people there. Dorrie was highly suspicious, since Grammy works in a doctor’s office! It took her quite a while to relax, and she didn’t really completely do so until we came out of the office and got back into the car. Then she was grinning from ear to ear.
Unlike at Christmas, this time she had no issues with Grammy’s house at all and settled down on the floor to scoot around and play with the toys we brought. We had plenty of time there, since we had to feed her and then sit around for quite a while for it to be ‘safe’ for us to get her back into the car. We managed to make it back home without any puke incidents; D even fell asleep for about half of the ride, which she is usually reluctant to do.
Posted: insurance drama, moving forward... or not, our little witch, schoolhouse rock
27
July
2010
Three year old stats:
Weight: 12.86kg
Height: 35″
Head: 51.5cm
She’s grown a lot this past year, lengthwise, but she has not put on very much weight. According to the ped, she’s now about 25% for her actual age in weight, and made a huge jump from 3% to 10% in height. Woot!
Head is, of course, still way out of proportion at 75% or some other ridiculous number.
Grammy came and spent the night before Dorrie’s birthday, and Miss D was well behaved. She went to sleep at a reasonable (for her) hour, slept nicely, and then woke up just a little bit before 11am. So we then got her all dressed and packed up and headed off to the Fairy Tale Festival being held downtown at the park. I had been pretty concerned about the parking and traffic situation, and was right to be so, but as it happened, things worked out pretty well: since the festival started at 10, the traffic was pretty light by the time we got there at 11:45, and though there was zero parking to be had, we were able to find a place right at the park to pull off and unload.
Daddy took off to get some gas at that point, and Miss D proceeded up the hill in her chair with me and Grammy. First of all, let me just say that it was HOT. This summer has been one of the hottest I can remember for a very long time, and we’ve had a lot of very bright, sunny, HOT days. To put things into perspective, last year we had approximately 3 days of sun in all of June and for most of the rest of the summer the temps didn’t usually break 85. It’s been 90 and 100s for many many days already this year, and, of course, muggy. We don’t get dry heat.
So it was hot and bright, two things Dorrie has not had much experience with, but she handled it well. She was interested (if serious) and looked around without fussing or being upset. There were a lot of booths set up where you could do various fairy tale (aka princess and fairy) themed crafts. Some of these we bypassed, but Dorrie ‘helped’ make herself a wand and a bookmark. We entered a few raffles, which we did not win. Eventually we came around to the snow cone stand where Grammy and I each got one because did I mention it was HOT?
Apparently Dorrie agreed, because, in the amazing happening of the day, she made peace with her old enemy snow and consented to mouth part of mommy’s snow cone.
We circled back around and got in line for balloon animals (and plants — Dorrie got a flower) when daddy reappeared. By that point it was nearly 1pm, which was the end of the festival, and we had to be back at the house for an appointment by 2. So daddy went off again to retrieve the car, and we waited in the shade for him to make his way back. Amazingly, he managed to get down into the park (against the tide of exiting cars) so we could get everything packed away again, including the little sweat ball Dorrie.
Once we got home, we tried showing her her cake again (she’d examined in the night before with limited interest — see the end of the post for that).
This time we convinced her to touch it, but she was not pleased to find some of it sticking to her when she took her hand away.
She also had no interest in tasting any of the frosting.
But we were all happy to eat it for her.
The last thing for the day was to get her hand prints up on the wall. This went more smoothly than last year, since a) she is more used to going upstairs, b) she now has a real way of being off the vent instead of attaching her to an ambu-bag. We even managed to get her to (almost) put her hands flat by putting the ink on them, then starting patty cake and eventually patty-caking the wall.
The first viewing of the cake.
I hate you all.
Classy.
Posted: little fat fairy, moving forward... or not, our little witch, tales of interest
21
July
2010
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: moving forward... or not, our little witch
18
July
2010
It’s hard to believe that a mere 10 or 20 seconds after these pictures were taken, she decided to throw up all over herself and me (as chronicled here). Before that minor disaster, she seemed to enjoy the bed very much. Here’s hoping she likes it again once she’s expected to sleep in it.
In continuing with our rearrangement, we’ve finally moved Dorrie’s rocking chair up to her room rather than having its purple gingham gracing our living room. We bought a new recliner to replace it (otherwise there’d be no real place for people to sit besides the couch). Dorrie approves of the new chair.
The recliner wasn’t the only new chair to arrive this week. A few months ago, we had ordered a bath chair. MVP naturally denied the claim and it was sent along to medicaid. Medicaid is currently in a mess due to the discontinuation of some federal funds the state had been expecting, and one of the emergency cost cutting measures they had implemented was to pay DME companies cost + 10% of items rather than cost + 30% as they had been. The DME companies were in an uproar as a result, as the new repayment scheme didn’t actually cover their overhead, and quite a lot of equipment wasn’t able to be ordered. After general outrage at disabled little kids not getting wheelchairs, the state backtracked and restored the funding to normal. We knew Dorrie’s bath chair had been caught up in this mess, but we were still trying to find out if it had been ordered when it was suddenly sitting on our porch one night at 9pm when I came home from work.
Dorrie still isn’t sure what to think about it, but I think she won’t have too much trouble getting accustomed to it once we can actually use it for her baths.
Last, a bonus picture: casual Dorrie.
Posted: insurance drama, moving forward... or not, our little witch
16
July
2010
Last Sunday we hauled Dorrie out for another outing, this time to Olive Garden. She, of course, had zero interest in any of the food to be found there. In fact, she found this trip much more boring overall than the one we made to the movie theatre.
This time Grammy went with us, and we had a fairly nice lunch. I say fairly, because the restaurant was hot (what the heck is with businesses not having their AC going in the morning?) and because it wasn’t especially relaxing to try and eat while keeping an eye on Dorrie in her chair. Mainly because she just seemed bored. There were other people nearby and she watched them, but she wasn’t very interested in the toys we’d brought or in watching us eat.
So, it was a success (and I was pleased to discover that restaurants are noisy enough that the sound of a suction machine is as nothing), but I’m not sure how often we’ll try it. It’s just as pleasant to sit at home and eat take out.
In an update to the last post, as of last Monday we’ve decided to discontinue all goat milk for now and try and figure out an alternate plan. She was very very phlegmy, she had a rash on her chest which may have been heat rash but may not have been, and it just didn’t seem like the increase was agreeing with her very well. Puking has eased off a bit (except for yesterday, where she did it three times. :P). We’ll wait until we settle out with that before we move ahead with an alternate idea.
Posted: moving forward... or not, our little witch, tales of interest
8
July
2010
I haven’t posted too much lately on here about the puking situation, mostly because it’s been significantly improved over the past year or so. For the past 6 months we’ve often gone a whole week at a time without a vomit.
This week has been bad, though. Three days in a row of pukes. Today’s was the worst, as I’d taken her upstairs and I really didn’t want her to throw up on her bed or her bedroom carpet before she’d ever actually gotten to spend the night using either. So I ended up racing her downstairs with her in my arms and the puke cradled between us.
It was gross.
After removing her clothes and half of my own, I cleaned her up, but we ended up changing the trach once dad got home just so I could clean her neck underneath it (naturally, it all pooled in and around her neck.)
About a week and a half ago we upped her intake of goat kefir, and I’m wondering if that’s finally starting to catch up with her. If that’s the case, then we may have hit a wall in our efforts to get completely off the Neocate. We’ll see how the next week or so goes.
Posted: moving forward... or not, our little witch, trying to stay healthy
4
July
2010
A couple of weeks ago we had made tentative plans to take Dorrie to the movies to the early showing on Saturday morning. As it turned out, that was much too early for her; she was far too tired to wake up and slept ’til noon that day.
The showing we had intended to go to was special (AMC’s Sensory Friendly Films — a brilliant idea and we definitely will get to one eventually) because we thought they might be more understanding of occasional noise of suctioning. Those are only once a month, but we still wanted to go, so we thought we might dare a regular showing. When the weekend of the 4th was to be sunny, we thought perhaps the movies would be relatively empty what with people at barbecues and doing outdoor stuff.
Dorrie woke up this morning right before we were going to have to wake her, and that was definitely a sign. We’d had her watch Toy Story a few times this week so she’d recognize the characters (it can take her a while to warm up to unfamiliar shows), so we were all ready.
It turned out we were wrong about no one coming to the movies on the morning of the sunny 4th, but we didn’t hear any sick people in there either so it was fine. Somewhat annoying was the fact that the wheelchair seating was basically a big empty area with one lone seat for the non-wheelchair person with them. But it was right at the back in case it was necessary to make a quick exit.
Dorrie did great! There were endless previews, which neither dad nor I had reckoned with, but I rolled her out to the lobby for suctioning once then and one more time during the middle of the movie and that was it! I was so impressed. She was pretty tired of it by the end of the movie (I think she would do better with something that had a little more music or perhaps starred the Muppets) but she stayed fairly calm until it was all done. It was obvious, however, that she was relieved to get back into her carseat.
Posted: moving forward... or not, our little witch, tales of interest
16
June
2010
And for the first time since she was about 14 days old, Miss D was intentionally on room air yesterday — no oxygen at all — for two sessions of 15m each.
There’s been a sea change in Dorrieland this past year in terms of her oxygen sats. I think it really started last summer, when we were working to start the HME trials. The day the whole crew came to the house to have a look at the mist machine and try her out on everything, she was off oxygen for a good ten minutes without really desatting. It was a huge change from the girl who would drop like a rock if her oxygen was removed. After that we slowly became more comfortable with the idea that her sats were relatively stable. We started turning off the sat monitor if it wasn’t reading well due to her moving around a lot. We’d even take it off entirely for hours at a time.
The idea of having her off of oxygen on purpose, though, makes me darn nervous. It’s hard to imagine her not being connected to a tank. We’re going to take it slow, as much for our sake as for hers.
Posted: moving forward... or not, our little witch
16
June
2010
After a hiatus of a couple of months, we headed once again to DHMC last Monday for our long awaited eye appointment. Plus many others.
Dorrie was very pleased to be in the car for the first half of the trip, and was all smiles. But she must have realized that nothing good can come of being in the car for a very long time, because eventually her mood deteriorated and the square tongue came out.
She calmed down once we got her out of her car seat, and was delighted to be in her chair. We proceeded to our first appointment of the day, dermatology. We had to wait a little while, but were then ushered in to a largish room where the nurse apologized and said ‘the appointment was booked wrong’. I was starting to debate whether I needed to be annoyed or concerned, but the doctor came in anyway and she was one of the people who had already seen Dorrie last year, so I’m not sure what the big deal was. She examined the thing on her arm and said even though it looked different it still looked like [some long word I still can't remember] — basically a calcium cyst. We’re to let dermatology know if she’s going to be put under for anything else, and then they’ll remove it.
5 minutes, in and out. Very swift. So upstairs we went for our next appointment. Which, surprise, was with Dr Optimist! She hadn’t been on our schedule at all, but we hadn’t seen her since Feb(!) so this was not a problem. I went off to have some lunch, because we were told we’d have to wait 30m before going back to a room. Typically, Bob and Dorrie were called back about 5m after I left.
I returned to find Dorrie, to her extreme displeasure, had been MEASURED. She was still calming down from this dread experience and Bob was trying to get in between her flailing limbs to change her diaper. We managed to calm her down enough to get the diaper done, and then had a much more calm weigh-in. (Stats: 35″, 28.6lb, which tallies almost exactly with the numbers we’d taken at home)
Then Dr. Optimist arrived, and Dorrie eyed her with great suspicion. But she still had her clothes on, so I think she felt relatively safe, and so the stethoscope was endured without much trauma. We talked about her meds and her growth and about weaning and what to try next. I wanted to try and wean oxygen during the day before worrying about the vent at night, so that’s what we’re going to do. Nurse L wasn’t there, so everyone wimped out and labs were postponed once again, until July.
Then the eye nurse came in and put drops in D’s eyes, which she did not like at all. But she got over it pretty fast when no further indignities were immediately forthcoming. Sporting her awesome sunglasses, we moved to a different exam room.
And then a miracle occurred. The eye doctor came in and Dorrie smiled. And she continued to smile and laugh and be perfectly happy to stare at him and through his little lenses and at his light. So unlike last time, where he managed a 2 second peek in each eye, just barely long enough to confirm her retinas were properly attached, this time he got to stare and stare.
What we learned: no cataracts or other issues like that. Cornea and lenses are clear.
What we didn’t learn: anything about acuity. The laser surgery left too much scar tissue on the retina for shining a light manually to let him measure the reflection and figure out what kind of correction she needs.
But he agreed that based on her enthusiastic response to the things he was holding up and her excellent tracking, she certainly sees, and probably sees pretty well. We’ll keep trying to get a more exact assessment.
So that was appointment three. We headed to yet another exam room for appointment four. Unfortunately, Dorrie’s eyes were still dilated and this new room had no dimmer, so we had to try and keep her sunglasses on. She didn’t like that much, as she was tired of them (and tired in general.) The last appointment was neuro, and she wasn’t especially keen to have her reflexes tested; it had been a long day of people looking at her already by this point.
Neuro didn’t have any super helpful recommendations. I’m not sure what I expected him to say, but it’s discouraging to have no particular idea of how to improve her delays beyond therapy therapy therapy. Which is ok but it’s slow and hard to get.
Dorrie was not impressed by Neuro at all, and while we were talking, she finally convinced me to take away her sunglasses. So she sat there instead with her eyes closed and very soon fell asleep. And then the second miracle occurred. She remained asleep as we left the office, rode the elevator and bumped our way back to the car. She stayed asleep as we stuffed her back into her car seat and got her buckled in. She slept while daddy made phone calls from the back seat. She finally woke up shortly before we stopped for gas, about a third or half of the way home.
Amazing.
Posted: little fat fairy, moving forward... or not, our little witch, trying to stay healthy
15
June
2010
*Or, well, hour and a half. Close enough.
A couple of weeks ago we finally hit on a really good day to take Dorrie out to visit my workplace. We had our second of three IEP related meetings, so Bob was home when Dorrie woke up. He took Grammy’s car to work and so our car (and the car seat) were at home.
Unfortunately, in spite of my efforts to prevent this from happening (aka written instructions), Daddy and Grammy decided to give Dorrie lunch before I got home. So when we went to take her out to the car, she threw up all over the place. That almost derailed the trip right there, but eventually we did continue.
It was incredibly hot and humid out, and the car ride in the hot car seat cannot have been very comfortable, but Dorrie behaved herself very well. She was patient while I got her out of the car and we got her into her chair to go into the library. Fortunately the library was nice and cool inside.
Dorrie got to meet most of the people who’ve been hearing about her for the past three years. (Though sadly not everyone was there that day.) She was very impressed by the computers in the children’s room, and stared at one of the screens for most of the time we were in there.
We stayed for a little less than an hour, then headed home.
Though it didn’t start out the best, the outing was a success, and hopefully we’ll manage to get out more this summer. In pursuit of that, after we got home we had a visit from the guy who is in charge of coordinating maintenance and stuff for the condo assoc, to have a look at the place where we want to put a wheelchair ramp.
Dorrie examines a DVD.
Are you kidding?! Of course I want to check it out!
What am I doing over here?
What are you guys doing with my Sesame?
So it’s mine now?
(I actually forgot to bring it back to work with me on Saturday, so now it’s overdue. Whoops. I’ve also ordered our own copy for Dorrie’s birthday next month.)
Posted: moving forward... or not, our little witch