18
September
2010
Dorrie with one of the new toys she got for her birthday. She’s really good at hitting all of the buttons and making it go off.
Our new camera lets you hold the button down and take pictures in rapid succession. I managed to get a series of her laughing that I should totally make into an animated gif. This is one of them.
Every once in a while I sit there and curl my tongue at her, trying to see if she can do it too. She’s never obliged with a demonstration, but then I noticed in this picture she’s doing it!
Dorrie checks her email.
Very excited to escape from a doctor’s office with nothing done to her! (Outside Grammy’s work)
After borrowing a weighted blanket from Dorrie’s EI OT, we decided to buy one for her. I hunted around online and found a place that let you order ones with custom fabric, and they had Sesame Street. We were very impressed when it arrived; it’s extremely well made. It’s really made a difference in her sleeping.
Hot Fudge Face!
Posted: moving forward... or not, our little witch, trying to stay healthy
15
September
2010
Time for another disjointed, rambly post!
* * *
I had been kind of delaying this post because we finally finally had a date when they were supposed to install our wheelchair ramp. But they called today and the parts haven’t come in yet, so tomorrow is probably off. I’m really bummed. The weather the past two weeks has been beautiful and though we’ve taken Dorrie out on the deck a few times, it would really be nice to get her in her chair and go for a walk.
* * *
After her couple weeks of vacation, Dorrie ‘started’ school again the week before Labor Day. I say started, but we only had one visit that week, a combined OT/SLP visit. The next week was short again, but we managed to get in everyone except the TOD who randomly did not show up.
This week so far (2 days out of 5) everyone has arrived when they were supposed to, though the TOD (who, I must mention, chose her own date and time to visit) announced that this time was really bad for her and she needed to pick another one. Umm. Why did you pick a time that was bad for you?! She wanted to come on Monday ahead of OT; I tried to explain to her multiple times that while Dorrie is fine with two sessions in a day, they cannot be one after the other like that. She needs a break in the middle. In any case, right now I have no real idea when she’s going to come next week, so I’ll have to try and find out later this week.
* * *
So far D has been doing okay with school. She was quite happy and participatory last week, but so far this week has not been at all interested in paying attention in class. She just frowns and stares at the toys, but doesn’t really seem like she wants to play with them.
Then as soon as the teacher leaves she’s a crazy girl, scooting all over the floor, playing with all her toys and having fits of giggles.
She’s a mystery.
* * *
After some confusion with Medicaid it looks like all we have to do is fill out some kind of form to get some extra PT. Fingers crossed we should have this squared away soon. Of course, it would be easier had they actually sent the form last time along with the list of providers, but we all know it’s insurers who are conspiring to keep the USPS afloat in these hard times.
* * *
Dorrie’s been doing great off of oxygen so far during the day. Over the weekend we ran out of HMEs with no oxygen port (and after being asked for more, our DME managed to send us even more of the kind with the oxygen port, gah), so she spent most of Sunday and Monday with her passy-muir valve on. I like it, because she has an easier time making sounds with it, plus she doesn’t need suctioning. But I also don’t like it because it doesn’t seem as well filtered as the HMEs. I’m always worried a hair or a bit of fluff will go into it. Which is why I’m reluctant to let her wear it anywhere outside the house — we usually stick with our HME/suction setup then.
Some days it seems like her poor toes need a rest from the oxygen sensor, so we leave her on oxygen those days and take off the probe. She likes that too, because bare feet are fun and have much more traction.
* * *
She’s been making a tiny bit of progress in some areas. I really do think she’s getting better with her arm; it’s clear enough that she now does understand that hitting her toys is what makes them go, and she’ll repeatedly smack her toys so that they keep playing music/flashing lights/wobbling back and forth. She also shows a definite interest in specific toys that may be out of her reach.
When she’s in an especially good mood, she laughs like crazy. She’s getting better at it: a lot of the time now you can hear her laughing.
She’s always been good at getting her bottom in the air (moreso than her top), but lately she really gets her knees pretty far under her hips. If she could lift her head at all, she’d be ready to crawl. Neither Bob nor I are really sure what to do to help her there. We try to encourage her and help her work on her strength, but so far I can’t say that we’ve seen much of an improvement in head control.
She’s much less fearful lately than she used to be. There was a period a few months ago where almost anything sent her into a panic, her arms and legs flung out like a starfish, her face frozen in horror and her voice making little whimpering noises. But I almost never see her do that now, unless there’s really some reason for it. She’s still a huge non-fan of anything crumb-like, and will gag and retch if one gets into her mouth. But she has gotten over her intense fear of anything not plastic flavored, and has been happily chewing on prunes and licking spoons of hot fudge.
* * *
Speaking of less fearful behavior, she behaved brilliantly at the cardiologist a couple of weeks ago. Last year, she was completely terrified and freaked out when she had to lie on the bed and the ultrasound wand touched her chest. She only calmed down after we put a Fraggle Rock DVD into the tv they had in the room for just such a purpose. So this year we came prepared and I brought along one of her Sesame Street DVDs to watch. But we didn’t even need it! She was instead absolutely fascinated by the ultrasound machine and watched very closely as the echo proceeded. She even had to get an EKG, and though she was not a fan of the little alligator clips, she only made minimal protest. Grammy, who was with me at the appointment, was incredibly impressed and so was I (and so was the ultrasound tech because I think she remembered last year and the year before).
The cardiologist was impressed as well, but mostly with the results! We’ve dropped captopril from our med regimen and dropped cardiology from our list of people to see. He’ll remain on deck if she has an illness, but we’re otherwise released (caveat: assuming her BP is still good when we have it retested at the start of October.)
Posted: insurance drama, moving forward... or not, our little witch, tales of interest, trying to stay healthy