24
June
2010
So we finally had our actual IEP meeting last Friday.
As mentioned before, this was the culmination of several months worth of meetings and visits — ESS notified the school district about Dorrie back in January or so, and then in March or April the pre-school coordinator came to visit. After that we had a meeting in April to determine need, then all the specialists came to visit and observe Dorrie, then we had a meeting to discuss the findings, and then finally the last meeting to present the plan for the next school year.
We are fairly fortunate in that our school district is quite large for the state, and accordingly well funded and well staffed. They already have a teacher of the deaf and a teacher of the visually impaired on staff, plus PT, SLP, OT and special needs preschool educators.
We also decided as a group that it would be wiser for Dorrie to have services at home for the next year. Hopefully by next summer she’ll be off the oxygen and the vent, and we can explore the possibility of her actually attending the school. For now, that’s not a good plan. In any case, that lessens the burden on the district because they aren’t going to be required to provide her with a nurse or an aide.
I can’t say I’m 100% happy with the plan. But I am about 92%. That doesn’t count the part that wishes desperately there was no need for this at all.
What we got:
Summer services: 1x60m/week SLP, 1x60m/week PT, 1x60m/week OT, 1x60m/week vision. Preschool ed & teacher for the deaf are off in summer but will consult
* Now, as mentioned before, we have every reason to believe Dorrie’s vision is fine. But because it’s fine, and she does have such good control over what she looks at, this is going to be the easiest way to communicate with her for the forseeable future. So the vision teacher will help us with trying to assess her functional vision and to help work on things like signing and picture boards.
School year services: 1x60m/week SLP, 1x60m/week PT, 1x60m/week OT, 1x60m/week vision. Also 1x60m/week preschool ed, and 1x60m/week teacher of the deaf, but they will most likely come in tandem with someone else. So still 4h total services.
* This was where the 8% dissatisfaction came in. She has made some real progress this past year since she started getting PT once a week. I think PT twice a week would be even better. They were reluctant to add a second session, because they thought it might be too overwhelming for her. However, it was clear to me that they hadn’t actually thought about just how much time was going to be spent -with her-. 4h/week is hardly more than the 3h/week she already gets.
However, it’s also true that these are going to be a whole new set of people coming in, and Dorrie will need time to get used to them and trust them before she’s likely to make much progress at all — PT especially, since that’s very hands on. So we got their agreement that after she’s had some time to adjust (end of September) we’ll have another meeting and talk about adding another hour of PT. And at that point we (Bob and I) may have a better idea if we need to make other adjustments too.
(The other day I went in to the bathroom and when I came out again she was like this. If you can’t see it, she had flipped the tubes over so she could try and chew on it.)
(That thing on the left that she’s staring at is her oxygen sat monitor. She finds it fascinating.)
Posted: schoolhouse rock
21
June
2010
Posted: our little witch
17
June
2010
Posted: our little witch
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
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: nurse or no nurse, our little witch, trying to stay healthy