DorrieDorrie

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.

Posted by mom, under hospital crack, moving forward... or not, our little witch, trying to stay healthy