DorrieDorrie

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.

Posted by mom, under little fat fairy, moving forward... or not, nurse or no nurse, our little witch, schoolhouse rock