28
April
2010
April
2010
And the Winner Is2
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?
27
April
2010
April
2010
This and That5
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.
12
April
2010
April
2010
Daddy’s turn1
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.
3
April
2010
April
2010
Waiting3
Bob had said he was going to write a post, and so I was waiting for him to do it. Then he never did. (You are not off the hook! :))
Anyhow, the appointments mentioned in my last post but one were less than great. Not because of any bad news, but because somehow, about 50% of the time we drive the 200 mile round trip to DHMC it feels like we’ve wasted our time. After a great deal of wrangling back and forth about whether we were going to see Dr. Optimist this time around, we finally agreed that it just wasn’t going to work out schedule wise. So the first appointment of the day was audiology.
The appointment was at 2:30pm, and we thought that would be perfect. Dorrie is usually awake at that time and in a good mood. Unfortunately, she did not enjoy the car trip in the least — unusually for her (and we’re hoping hoping not a sign of things to come) she was crabby and complained most of the way. She was even less thrilled when we had to change her diaper in the back of the car when we got there. Then, as we were loading her into her stroller, she decided to vent her ire by throwing up all of her lunch.
Luckily we managed to direct the puke away from her, so her clothes weren’t covered. The stroller got hit, as well as the ground in the parking lot, but really who cares about the parking lot? We mopped up the stroller as best we could, Bob and I had a very tense moment in front of the poor guy waiting so he could pull his car out, and we finally got inside. But after the car ride and then the puke, it was clear that Dorrie was already done for the day before anything had even begun.
She was crabby at the audiologist and refused to cooperate at all in the testing booth. She was in a foul mood and did not want to be in her stroller or at the hospital. It probably would have been wise of us to take her out of the stroller and sit her on our lap for the booth, but it just didn’t seem like a great idea at the time. So the audiology visit was mostly a bust.
Then we went to the ENT, where Dorrie’s nemesis, Nurse L awaited with the dreaded Synagis. Dorrie was horrified after getting her shots and would only be consoled by getting out of the stroller and sitting on daddy’s lap. And this was the bright spot of the day, because still so seated, she found being examined with the otoscope, a procedure which usually reduces her to tears, to be highly amusing. We found that the remaining ear tube, which we had thought was gone, was still in place — just completely clogged. But no immediate plans for new tubes, so that is fine.
And then we left. Getting into the car went better than getting out, but the ride home (my turn to ride in the back) was just as awful as the ride up. Dorrie, though clearly exhausted, refused to nap. Instead she complained and fussed and coughed the whole two hour ride home. She would be quiet (though not happy) only if sung to.
It was a very long day, and as noted before, it often feels like a waste to drive all that way and essentially learn nothing. Was it worth a four hour car ride, Bob taking a day off work, and exposure to a hospital to get a couple of shots of Synagis? I don’t know.
On the plus side:
We did not bring the vent with us at all and Dorrie did fine.
We were able to get in and out of the house in record time.
Done with Synagis, probably forever.
This coming week we have another appointment, but this one is closer. The state has something called ‘neuromuscular clinic’ at which kids enrolled in special medical services can come and see a neurologist, an orthopedist and uh, someone else, all at the same time. This will be the first time Dorrie has gone, so we’ll see how it goes. Her PT is coming with us. Later this summer we should have an eye appointment, a visit with her regular neurologist, and the developmental pediatrician. Plus her actual ped, who we tend to see only once a year given her numerous specialists.
And now… some pictures!
A while ago, someone had wanted to see a picture of her trach. I never posted the pic here, but I thought there might be some interest. Check out the notes on the pic.
Our OT lent us a weighted blanket a month or so ago to see if it would help with her sleeping. It has been very useful. Here we’re just using it for positioning, but she often sleeps at night with it on her legs and it does seem to help her remain calm.
Monkeys!
For some reason she thinks having her snail push the monkeyball is absolutely hilarious.
Grammy was the one who invented the game.
In the mornings, if there’s no nurse (and sometimes even if there is), I’ll lay down with her after Bob goes to work. We can usually eke out a few more hours of sleep if I turn her around and hold her. I usually fall asleep myself at some point.
If it’s cold, I usually end up covering us up with the handy blanket that hangs around in the living room.
Where did Dorrie go?
The weather was great while I was in Pittsburgh a couple of weeks ago, so Dorrie went for a walk with dad and Grammy.
She saw far more of the outside than she’d ever really seen before. They walked all the way over to these little ponds a couple of streets over.
I wanted to see how she’d do on the sofa. The last time we tried sitting her anywhere (other than her own seats) was almost a year ago. She has improved a great deal, though there’s still a long ways to go.
Orange Dorrie and daddy watching tv together.
