18
July
2009
Dorrie is officially two now, chronologically speaking. Unfortunately for Mom, she could not be here — she had out-of-state classes she had to go to — so it has been a very low-key event. Dorrie does not seem to mind, though, since she gets to have both Dad and Grammy to play with all weekend to make up for it. Of course, then there are the birthday traditions, such as the birthday ice cream…
Playing in my stander, just playing in my stander…
Oh, a treat!
Wait, is this that cold stuff again?
Curse youuuuuu!
And the yearly hand prints on the wall…
No, let Grammy do it!
Squish, squish
See, like this…
This is why we are all wearing dark shirts, and she is wearing no shirt at all…
(Of course, these pictures do not show her utter rage at being taken away from her living room to go upstairs in the first place.)
But, like Mom said, we don’t always just torture her…
Story time with Grammy
So all in all, it has been a mostly uneventful end of the week. We were a little nervous on Friday, because during her bath the night before, her ventilator circuit popped apart and she ended up breathing in a bit of bathwater, and in the morning she was acting like she felt a little icky. But towards Noon, she was behaving normally again, and she has been fine since, so it looks like she just wanted to add a little extra drama to Mom’s trip for classes.
Next week should be interesting. First we have a trip up to the hospital for a bunch of appointments on Monday, where I think we will be talking about a trach collar for Dorrie, as well as the hearing aids she got molds for during our last visit. Then we have her two-year check up with the pediatrician, although I do not think there is anything special scheduled for that visit.
Posted: our little witch
13
July
2009
It’s hard to believe that it’s been two years since Miss D decided to join us on her own schedule. Like January/February, this is not a time of pleasant memories, and even at the best of moments I feel uneasy as we approach any “important” dates. I’ll be happier when we’re past it.
There’s not all that much of note to report this week, as we worked on getting back to our normal schedule following the long weekend. Dorrie continued to do very well with her prune food, and so we have now begun adding carrots to a different meal. If we can successfully introduce enough foods, we’ll be able to perhaps cut down on the amount of formula with the ultimate goal being to stop the overnight feeds altogether. I’m very hopeful that if we can manage this, it will lead to a big improvement in her sleeping.
We had some success during the week with getting her to take decent naps during the daytime, though this did not continue over the weekend, so I’m not sure what to think there.
We’re still waiting on word of the new chair/stroller arriving; I’m getting very impatient now. The stander is great, of course, but I see how well that fits her and I feel bad when we have to squash her into that tiny Tumbleform chair to sit.
Dorrie also received her birthday present from Grammy and Uncle Jonathan, which is a Little Tikes swing and slide. This is something which I had seen a picture of on another blog, and I thought it would be great for Dorrie. Both of the toys do not really require her to do much, so she can use them now with our help and hopefully play with them on her own some time in the future. So far, though, she is absolutely terrified of it and has added a new expression to her repertoire in its honor.
I don’t like this
HELP ME
And just to prove we don’t torture her all the time.
Posted: little fat fairy, moving forward... or not, our little witch
5
July
2009
This week saw Dorrie progressing more with her stander. The PT put some foam blocks on the tray so that it’s easier for her to keep her arms from falling back, and now she finds it easy to keep her hands where she can use them. Her goals so far seem limited to getting things close enough to gnaw on them, but hopefully they may expand over time.
The gnawing on everything continues — our hopes for a break in teething were dashed at the beginning of the week when it was discovered that tooth #16 was not canine #4 but rather 2-year molar #1. There are bumps elsewhere (including that last canine) so probably some more teeth will make their way out over the next few weeks.
Now that we seem finally to all be well again (aside from daddy’s continued coughing) we’ve changed up Dorrie’s diet slightly. We hope eventually to be able to stop using the formula we’ve been on for the past year — Neocate — and let her eat real food. Ideally through the mouth, but the fact is that this is not going to be happening very soon, so for now we’ll need to blend it up so it can go through her tube. The trick is to figure out what real foods she can tolerate and then craft a nutritious diet from them that won’t drive us mad trying to make it. We’ve started simple, and this week she is getting 2.5oz of baby food prunes in one of her feedings every day. If that doesn’t cause any digestive distress, we’ll try introducing something else in a week or two.
She also gnawed on some carrot in a mesh feeder bag. She didn’t seem to mind it, though probably we’ll hold off on doing that regularly while we’re attempting to experiment with introducing significant quantities of other foods.
Bonus Pictures — Miss Tubbo at this time last year. Seeing her every day, it really seems like she hasn’t changed much at all. A bit leaner, of course, but just so it’s noticeable. Until you look at pictures and you realize holy crap.
Posted: little fat fairy, moving forward... or not, our little witch