28
June
2009
This week was our first full week with the stander. We’re still working on perfecting how to keep her legs fully supported — the pads that go around the knee are great, but the leg grooves(?) are much larger than her legs are, so the pads don’t actually hold her in place. So far it seems like shoving some rolled up blankets in between the pad and the knee may work to fill up the extra space. More importantly, Dorrie continues to enjoy going in the stander, at least for the first few minutes. Her enthusiasm definitely wanes after that, though she is at least stoic and endures until we take her out.
The PT told us that her stroller/chair had been approved by insurance, so now we’re just waiting for the equipment manufacturer to get it shipped out. Woot! In anticipation, we’ve rearranged our entire living room to better accomodate the increasing amount of large stuff we have to have around. We’ve also had to discard the area carpet we had in there; somehow some pukie did not get cleaned up 100% and began to stink and worse, it looked like it was growing something!! Gross! Bob cut out the spot with the carpet knife, but a hole in the carpet just looked too trashy for words. So we got an el cheapo replacement at Home Depot. Hopefully next year we’ll be in a position to replace these floors. The tile is really hard.
Dorrie has been a very boogeriffic baby the past few weeks, dating back pretty much to the beginning of May, when she had an ear infection. Then both mom and dad got sick, and Dorrie seemed to have a lingering ick herself. A couple of weeks ago her eye suddenly got very gooey, so we were alloted some drops by the ped. The goo did not completely go away and then suddenly it was coming out everywhere — her ear, her nose, her suctions. (Gross again). We started another course of eye drops and somehow it seems to be helping everything, so I’m hoping we’re finally seeing the last of this ick. Now if only daddy’s cough would go away.
Dorrie has made some significant progress with her arms in the past month. She is much more able now to direct her arms to where she wants them to be so that her hands make contact with desired objects and people. It’s clear it still takes her a lot of effort and concentration to do it, but the movements are much more deliberate. She’s enjoying a toy a brought back from IKEA — one of those things with looped wires holding wooden beads to move back and forth. Trying to get her hands and fingers on the beads is very good practice.
Posted: moving forward... or not, our little witch, trying to stay healthy
21
June
2009
Dorrie and her daddy get on famously, and I’m sure she knows she’s lucky to have such a dedicated and patient father who:
- Saw her for at least a few minutes almost every single day for the 8.5 months she was in the hospital, even though said hospital was 100 miles from our home and his job.
- Arranged his work schedule while she was in the hospital so he could spend some days working remotely, and has continued to work an unusual schedule mommy can keep her job now that we’re all at home.
- Gets up almost every day at 2 or 3am so that he can take the second shift of watching her at night.
- Does every other trach and circuit change so both he and mom keep in good practice for emergencies.
- Handles most of the calls to insurance/equipment vendors/doctors/pharmacists.
- Plays with her, reads her books, does exercises, and generally spoils her like the little princess she is.
Posted: our little witch, tales of interest
20
June
2009
Now that Dorrie is older and her motor delays are more and more clear, it was time for some better equipment. Laying around on your back all day gives you an odd view of the world — literally.
We’ve been borrowing an orange Tumbleforms chair from the OT, but Dorrie pretty much fills that to capacity at this point and then some, so one of the things we needed was a better chair. We also decided to try and get a stander, since she needs some way to work on bearing weight on her legs and her head control still isn’t really good enough for us to just hold her. Plus the vent tubing gets in the way.
As it turns out, a stander, not having a really obvious equivalent in typical baby gear, is pretty straightforward to get approved by insurance. Thanks to the efforts of the equipment company and our PT, the approval sailed through and we finally got it delivered this week. (We’re still waiting on the seat, which takes a great deal more justification, since there are plenty of regular chairs on the market and this little thing called pillows to prop people up with) I’m kind of depressed over the need to have this thing at all, but at least it’s kind of cute. Dorrie seemed to enjoy it, too, something I’m hoping continues.
Dorrie’s New Big Toy
Humoring Us
This is Pretty Okay
I’m Standing Up!
[Note: For some reason the pictures are smaller this time. Probably because some of them were taken with Grammy's camera which defaults to a lower resolution than ours. In any case, you can always click on the pictures to see a larger version on Flickr.]
Posted: moving forward... or not, our little witch
6
June
2009
Dorrie got put on amoxocillin last week and as a consequence we are now in the middle of gassy, pukey hell. She’s not on a probiotic because the last time we tried one it -also- made her miserable and gassy. We’re intending to try again later this summer but this does no good to anyone NOW.
In the meantime, here are some pictures while we await the return of our regularly scheduled Dorrie.
Not Amused By the Camera
Nooooo! Anything but the SUN!
Sleeping, for once
Playing with Daddy
Posted: our little witch