DorrieDorrie

Photographic Evidence2

As was mentioned before, back in December, we had a plan for Dorrie’s grandpa and uncle (my dad and brother) to pay a visit around the holidays, but those plans were scuttled on account of flu. Luckily, the airline was understanding and willing to let them reschedule to a different flight, so instead, they came out to visit in January. And we have proof!

Who are these strange people?

It also happened that this was my birthday present weekend: for my birthday, instead of a physical present, Mom and Grammy stayed the whole weekend to watch Dorrie, and I got to go off and do whatever I wanted.

Grammy’s even still smiling. Of course, this was only Saturday:

All in all, I had a very good time during their visit. I briefly debated whether I wanted to have my birthday weekend coincide with their visit or not — after all, I would get to go out with them to dinner, brunch, etc. whether I was still “on duty” or not, so I could maximize my overall free time if I had my birthday weekend be on a different weekend. But then I realized that spending time with my family — which I otherwise never get to do, since I can’t exactly go out to visit them right now, and it’s a long way for them to go to visit me knowing much of my time is going to get taken up watching Dorrie — would actually be a really nice way to spend my weekend off. So Saturday night, we went to our favorite Irish Restaurant & Pub, The Peddler’s Daughter (and nearly got the rental car towed on account of not seeing the oddly placed “Reserved parking” sign in a lot a block away); and on Sunday morning we went to Michael Timothy’s for a medium-to-upscale brunch. I only wish we had had more time, and that we could do this kind of thing more often.

On an unrelated note, we have also been more proactive about making sure Dorrie gets more stander time. Our Monday-and-Wednesday nurse in particular has been wanting to get involved, so now she and I always put Dorrie in her stander in the afternoon while I’m working (I stop to help get her in and out, and she makes sure Dorrie stays entertained in the time between).

Piano prodigy? Time will tell:

(Even though it wasn’t related to the family visit story, it was such a cute picture I wanted to share it anyway!)

Posted: our little witch

Food3

This morning the person from the ‘feeding team’ came down to visit again finally. She hadn’t been since last May, when she unfortunately visited right in the middle of a period of intense retching, gagging and throwing up while Dorrie was recovering from a course of antibiotics.

Of course, this time Dorrie slept through her whole visit and we all just sat and talked. However, Miss D is in a better place in terms of eating and it’s probably time to get that ball rolling again however slowly.

As chronicled before, but perhaps not mentioned very lately, we started introducing real food into Dorrie’s tube feedings at the beginning of last July. We went very slowly introducing new foods, giving her about 3 weeks in between to let her body adjust to something other than formula for the first time in a long time. As we introduced new foods we continued to feed her the old ones, which meant that for quite a while she was getting the exact same real food every day — a big contributor to her orange tinged skin. But now, finally, we are getting to the point where she has enough foods that we can mix it up.

More importantly, she has started tolerating much larger volumes (8oz at once without throwing up!) and this means that the real food feeds (still using Neocate as a base) can be made to contain enough calories that we’ve been able to cut back on her overnight food. And finally, last week, we took the plunge. No more overnight feedings!!

We’re still working to introduce additional foods (we need some more fats in particular), but so far so good. This month has been pukier than December or January, but not alarmingly so — she seems to be tolerating the change pretty well. Whether or not we have the calorie mix right is another question, because we’ve had trouble getting accurate weights at home. She seems skinnier to me, but it also may be because she’s lengthening out.

Posted: little fat fairy, moving forward... or not, our little witch