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 by mom, under 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 by mom, under 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 by mom, under moving forward... or not, our little witch
2
June
2010
Dorrie’s recently started to show a very strong preference and interest in certain television shows. All flavors of Sesame we get (Sesame Street, Play with me Sesame and Plaza Sesamo), as well as Angelina Ballerina are her favorites, and often cause her to absolutely crack up.
Even though she can be quite ‘chatty’ at other times, for some reason when she laughs, it’s very rare for her to make a noise. Instead, if she’s sitting in your lap you can feel her body shaking as she laughs and laughs.
(PS. The nurse didn’t show up again today. And they didn’t bother to tell us until we called to inquire.)
(PPS. The snotmonster seems to be nearly departed.)
Posted by mom, under nurse or no nurse, our little witch, trying to stay healthy
28
May
2010
Be warned. The picture and description below are rather graphic.
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(Well, actually, they’re just gross.)
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… Okay, enough warning. By popular demand… the snotmonster:
This is actually not as bad as it has been. Over the last weekend and earlier this week, if we turned our attention away for too long, she would end up with a trail of snot all the way from her nose to the mat or blanket beneath her. But at the same time, as Mom said, that is actually the worst of her symptoms. She’s still acting a little run down, and the glands in her neck are still kind of swollen, but she hasn’t had any of the other sorts of symptoms that we associate with her being sick, like extra O2 requirement, green or yellow secretions, elevated heart rate, etc. And she has definitely been acting more lively as the week rolls on, so we’re pretty well convinced that she’s on the mend. We may call the pediatrician’s office if we don’t see an improvement in her actual symptoms soon, but all in all, it’s been one of the least stressful illnesses she’s had.
Posted by dad, under our little witch
27
May
2010
Miss D has had a cold since last Friday night. Knock on wood, it’s thus far been confined to her head, and has not interfered with her breathing or oxygen needs. We have though gone through nearly 3 whole boxes of kleenex, and her poor little nose is alternately red or disgusting.
Aside from very poor sleeping (down for a few hours, up for a few, tired looks the whole day) and crabbiness last weekend, she seems to be handling it all right in other ways too. We have had a few minor puking incidents precipitated by gagging on post-nasal drip, but much fewer than you’d really expect.
In unrelated developments, she’s gotten a bit more demanding recently trying to get someone’s attention. Especially if she’s on her vent, she’s able to make quite a bit of noise until someone who may be occupied elsewhere looks over to see what it is she wants.
Nursing woes continue (the big surprise will be the day they haven’t). Our night nurse is retiring in July and they have yet to find any hint of a replacement. Our other nurse has apparently injured herself in some way and will be out indefinitely. We’ve had a new (day) nurse testing the waters the past couple of weeks, but he (yes, an actual guy!) can’t really do the schedule we want, so it’s a stop gap at best.
All of the people from the school have now paraded through. They’re supposed to have their reports ready for next Friday, when we have a meeting to discuss them. Then they will go off and spend 2 weeks writing the IEP so we can have another meeting to actually go through that. Hopefully that’ll be the end of the process.
We’re also in the process of investigating setting up a special needs trust for Dorrie. In order to keep her Katie Beckett medicaid waiver, she can’t have any assets in her own name. But if we set this up then money can go to the trust instead. (Or directly to us, which is easier, but doesn’t work for everyone.)
Posted by mom, under moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
16
May
2010
I’ve gone away a few times for classes over the past year. But when I did, Grammy always came over to help with Miss D and give daddy a little bit of relief.
Unfortunately Grammy was unavailable this week when I went away overnight for work (sorta). I left around 6:45am on Thu and got back a bit before 8pm on Friday. Now, we did have a nurse who showed up on Thu night, but that’s still some very long days with Miss D.
It sounds as though things went pretty smoothly, however. Dorrie slept in on Thu, managed to escape a trach change (a scheduling snafu meant daddy’s planned assistant wasn’t able to come at the intended time, and barring an emergency situation it’s far better to have two people at minimum) and played with her toys and with daddy all afternoon and evening. Her PT called in sick on Fri morning, so Fri was much a repeat of Thu as far as little miss was concerned.
She was acting pretty tired by the time I got home on Fri, and we both thought she would go down for a late nap. But apparently my presence rejuvenated her, because instead of taking a nap she got her second wind and stayed awake until 2am. With no nap!
Posted by mom, under our little witch
28
April
2010
And the answer to the question of will the nurse show up is
NO
All those who had that choice in the betting pool may collect your winnings. :P
Which finger was I supposed to stick up, Grammy?
Posted by mom, under nurse or no nurse
27
April
2010
Did I mention that we’ve gotten rid of the overnight feeds? I’m sure I have, but it bears mentioning again because it’s so wonderful to THROW AWAY the stupid feeding bag at 9:30pm each night.
Puking is currently at an all time low. I’ll probably jinx it by saying so, but we’ve only had 4 pukies in the whole of April. 4!
Vent weaning continues to go all right. We’ve spent April at ~11 hours off a day, and once it turns to May we’ll go up to 12. We’re almost at the point where we can consider the logistics of having her sleep upstairs in her own room.
It’s already much much easier to move her around in the house. Last week we brought her upstairs to our room so we could tidy it up before a guest came on Friday. And then mom and I brought her upstairs on Friday so we could tidy up -her- room, which had somehow turned into storage central with piles of unopened and partially opened medical supply boxes everywhere.
Friday was quite busy, as I look back on it. The morning was spent at the elementary school where we had our initial IEP meeting. Aside from me and Dorrie’s 3 therapists, there were also the special needs preschool coordinator, a preschool teacher, visually impaired teacher, teacher for the deaf, SLP, OT, and PT. The meeting was mostly for them to get information from me and for them to go through the motions of determining that yes, there was a disability here and thus evaluations were called for. Over the next few weeks most of the school system people from the meeting will visit the house in conjunction with Dorrie’s EI therapists and do some evaluations. Then we have two more meetings (at least). One to discuss the findings and then one to discuss the actual IEP once it’s written.
Hopefully it all goes smoothly. Dorrie’s case is not particularly unclear — it’s mainly a question of how much they’re going to say they can provide vs. how much we want and how close that comes out to be.
Dorrie is doing well. Aside from going upstairs a couple of times last week, she’s also working with her stander again. It had been in desperate need of adjustment, and neither her PT nor I could manage to do it. Finally someone from the equipment place came and they had to practically disassemble it to get it to the proper configuration.
Now that she’s comfortable in the stander again, she’s back to enjoying it as she had been originally. She even discovered a new and highly amusing game with daddy, ‘disappearing pinwheel’. Daddy would wave the pinwheel around and then suddenly yank it down underneath the tray. It never failed to crack her up.
In nursing news, we got a second weekday nurse a few weeks ago. Or supposedly we did. She came one day, then had to take off the next week for some unknown reason. Then last week she just didn’t show up at all. Supposedly this was the agency’s fault for not calling us (…) but I’m still putting it 50/50 that she’ll show up tomorrow.
Posted by mom, under little fat fairy, moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock
12
April
2010
Unfortunately for me, my laziness meant that Mom posted the pictures I took of Dorrie during her trip to Pittsburgh before I could, but I do still owe a post, so here it is!
First of all, things were uneventful on the home front while Mom was away. Grammy did her usual Friday cleaning routine, we ordered our usual Friday afternoon pizzas, and then we hung out with Dorrie for the rest of the evening. As usual when Grammy stays over, she slept on the floor with Dorrie to keep her happy during the night (turning her if she wants it, patting her to keep her calm when she gets fussy, changing her if her diaper gets too full, etc.), and I slept on the couch and took care of the food and water and meds and such. My other duty of course was to help get Dorrie to sleep when she started getting tired, since she often fusses and fights sleep as long as she can. But to everyone’s surprise, she went to sleep for Grammy just fine — and not only that, but earlier than usual for her. Go, Grammy!
And it looks like it may have been the start of a trend — or at least that’s what we hope. Lately it’s been getting easier to get Dorrie to sleep, in spite of the fact she still tends to take her nap in the middle of the evening. Right now, her desired bedtime seems to have shifted to around 2:30am instead of 4am, and she has been waking up more around Noon instead of 2pm. Hopefully we can keep encouraging that trend.
Last week was our visit to a clinic with a whole bunch of specialists to try to get a grasp on just where Dorrie is at developmentally. We wisely brought along some of Dorrie’s floor mats because we knew that if we put her on the exam table, she’d tense up and freak out, and since the goal was to see her normal behavior, the whole trip would be a waste. And Dorrie was a bit tense at first, but we got out Monkey Ball and sat with her, and pretty soon she was playing and behaving normally. The specialists asked questions about Dorrie’s medical status and what she seems capable of, and we got a brief visit from an osteopath (I think) who checked her out and declared he didn’t feel anything about her skeletal structure that gave him concern, and that we would not need to x-ray her this visit. I don’t think Mom or I really learned anything we didn’t already know during the visit, but I think that the team working on Dorrie’s case has a better picture now of where we are. And of course, all this also feeds into this summer, when she is supposed to start school.
And that is another project for this month: Dorrie turns three in July, which means it is time to start school. All signs are that she will get her services at home, which is pretty much the only way we could do it without seriously inconveniencing ourselves as well as the school. Personally, I’m enthusiastic to see how she does with more intensive support — the few PT and OT visits we get each week are good, but more is always better.
Posted by dad, under our little witch, schoolhouse rock