defeated

Just a quick update before I get into what I really wanted to write about. I've been in communication with the neurologist and after making some adjustments to dosage, we seem to have made some headway. Elianna is still having some seizures but not the crying kind. They are less severe and less frequent, most days.

Elianna has a cold, that comes with a terrible cough that shakes her whole body. It sucks and it is sad to watch, but the good thing is that if she's coughing, it means she is able to clear her lungs. She is a bit congested but nothing too crazy, no fever, so we just need to ride it out.

Today was the kind of day where I felt totally utterly defeated at every turn. I had one goal for today, evidently it was far too lofty to attain. Milena's library books were due today. I wanted to take a nice walk to the library (15 min) and hang out there for a bit and pick out some new books. In all, this trip takes about one and half to two hours from when we start putting on winter gear to when we get home and have it off.
Around 10am, when the pump/feed was done, I started the process, which first involved collecting all the library books, so Milena and I did that together (next time we should do this in advance, but then I have to figure out where to hide the bag so it isn't unpacked again before we actually go). Then I remembered that no one had eaten breakfast, so we worked on doing that. By the time all the little things that needed to be done before we left the house (and choosing to ignore others, like washing pump dishes, in an effort to save some time), it was 11am. No longer time to leave and get back in time to be pumping at noon. Sigh. I missed it. The crappy thing is, if I don't get out in the morning, it just doesn't work. After the noon feed, it's naptime. Then there's the 3pm feed, during which M is sleeping or has just gotten up. It's 4pm before we are ready to go anywhere and that's when I need to start supper, because we aim to eat at 5pm, so that we can all eat together before I have to go do the 6pm pump/feed (plus it's dark and colder and sucks to go out then). After supper is cleaned up it's time to start getting ready for bed and what do you know, another day is done. Sigh.
Because I kept attempting leave the house, I skipped doing dishes and other little tidying tasks (laundry), so now I sit here with the day done, my one goal for the day not accomplished and feeling like the house imploded and the chaos might just eat us alive.
I wish I could stay calmer and find ways to get a little more cooperation out of M, but she totally feels my sense of urgency and magically seems to find this incredibly slow pace and insane ability to get distracted. She even wanted to go to the library and go for a walk (she loves these things and often asks for them) and talked about it between each of Elianna's feeds, but couldn't stay with it long enough to actually get dressed in a timely enough fashion to be able to leave the house.
There are times when it does work and she is able to get herself ready while I feed Elianna, and those days are marvelous, I just wish we could find that groove a little more easily and consistently.
I also have to recognize that today was maybe not the best day to make the library my goal but the books were due today, and all week it was on my radar to make an attempt for the library (all the other days this week it didn't even make it to the point of being attempted). I was very tired. I opted to go out late last night, because the call of portzelki was just too strong. I just have to say that they did taste amazing, all warm and soft and sweet and fried. Yum!


- Posted using BlogPress from my iPhone