Jeremy’s been traveling more than usual this month and it’s been a little hectic around here for me. It feels like I haven’t left the house in a month (although I know this isn’t true) and every minute feels scheduled with work or childcare or cooking or cleaning or errands.
My parents left for China this past week – we are missing them already. This was the last Sunday night dinner my parents had with the Martins. I like this photo (even though my mom is blurry) because of all the wacky facial expressions everyone has on their faces.
And since Jeremy’s been gone away, I’ve had to handle some things on my own that I would rather not have, mainly Edda’s IEP meeting.
We had Edda’s IEP meeting this week and I really enjoy Edda’s school and the staff there love her and care for her and teach her. It’s just very, very difficult to sit and listen to all the things that Edda cannot do for 90 minutes. And there are so many things that Edda cannot do. And it is all so sad to listen to it all at once from people who care about her and spend every day with her and not feel like all is lost and will forever be this way.
This school year was especially difficult because with the onset of Edda’s more substantial seizures and the various medication changes – I would say Edda lost 2-3 months of school just trying to stay awake through the day. My daily hopes for Edda’s school day changed from seeing progress in various skills to just to see if she could stay awake for longer than 1/2 the day and also to if she seemed to enjoy being at school. It’s only been in the last month or so that we’ve seen Edda’s enjoyment return.
I would say that Edda’s hand use is poorer than it was last year – I think because they focused so much on eye gaze this year, that the hand use suffered. We did have a few good eye-gaze trials at school and I feel like this is our big triumph this year with the school system, but I have been dragging my feet on procuring one of these devices mainly because I think it will end up not being used very much and just sitting in the corner of the dining room table taunting me like a piece of unused exercise equipment. Anyways, I feel like at home this year, because Edda is now almost half my weight, we are just struggling to do a lot of the physical care which this year means buying a lot of equipment to help with lifting – bathing, toileting, getting up and down stairs, getting into the community and out of the house that that these tasks are already overwhelming enough for me. I have added a regiment of back exercises to keep myself strong in hopes of not throwing out my back when I’m maneuvering Edda.