Month: October 2010

Last night, Jeremy and I went to IKEA for date night. We needed to return some cabinets which were the wrong size and we thought that going to IKEA would be relaxing and fun! However, we spent a long time waiting, first in the return line, then at the kitchen remodel section, and then finally waiting for the items to be pulled. All the colorful colors were not enough to make us feel like we were out on the town and reveling in each other’s company. We were out on date night doing errands. We were out way past our bed-time (9:15 pm) and the $1 frozen yogurt did not seem to make up for the weariness that we both felt. At least we managed to get all of our goodies into our sedan, unlike the two girls across the parking lot from us who looked like they were trying to fit a sofa and and bookshelf into a beat up Nissan Maxima.

Today, the insurance folks came to look at the hole in the roof. It’s still pretty hard to see from the outside, you can just make it out if you know what you are looking for and use a pair of binoculars. Of course, the repair is going to come in just under our deductible, which is not super high but high enough to think ouch (we didn’t really budget a tree-falling-into-the-house fund), so I think we are just going to fix it ourselves. Well, not ourselves ourselves, ourselves meaning hiring a roofer and paying them ourselves.

We’ve finally figured out how to extend Edda’s wheelchair feet – so now she actually fits and her knees are not all akimbo. It only took 2 people both with advanced engineering degrees a year to figure it out.

As part of Rett Syndrome Awareness month, the MD/DC/VA families are hosting a stroll-a-thon in Fairfax next weekend. Consider donating to Team Edda to fund research for treatments for Rett Syndrome. Click on the link to donate 🙂 Thank you!

http://www.firstgiving.com/team_edda

Last week, we finally have gotten out of our little denial phase and have Google-diagnosed Edda as having seizures. I think she had 3 drop seizures last week (once on Tuesday at school and 2 on Saturday) where she actually fell to the ground (she did not get hurt). Now, she often wakes up in the middle of the night, unhappy, shaking and jerking. This has been building up since mid-summer, it’s the drop seizures that really convinced us that we can no longer really ignore this new development. We set up an appointment for a neurologist in a week or so to see what we should do. This is a setback, of course. We spent the weekend moping around the house and thinking that this was the start of rapidly deteriorating health for Edda and that her seizures were going to spiral out of control which probably is not true, but dammit, I like to indulge the pessimistic part of my personality. I also convinced myself that Edda was generally less responsive to me, my voice and her surroundings, so I did not hold out much hope for her first eye-gaze computer trial which was on Monday.

Eye-gaze computers have cameras and sensors installed along the computer screen to read Edda’s eye movements, so that her choices can be made by eye gaze. I have been working (slowly, but with great cheer and cooperation) with the school system to have Edda evaluated on these systems (there are a number of them out there). I don’t think the county’s ACC team have much experience with these sorts of devices, which is a little surprising to me. But anyways – on Monday, there were a whole party at Edda’s trial, both Edda’s 1st grade and kindergarten teachers, the OT, and 3 people from the central office. There were 4 video cameras trained on Edda. As I said, I was not optimistic, but Edda, as they say, exceeded expectations. She did not whine, did not fall asleep, did not act disinterested. She worked on the computer for well over an hour. She picked out pictures of Dora consistently from a field of 5, she consistently scanned over all her choices looking all over the screen, she did some simple, simple games. I don’t want to over sell Edda’s capabilities, it did seem haphazard a lot of the time and she favored the left side of the screen over the right side (same as her hands), but it was a nice start. She seemed pretty pleased with herself. So to balance out the crappiness of the onset of seizures, we have the really wonderful eye-gaze session in front of all the people who hopefully will fund the device and help Edda learn to use it.

Newborn Edda:

October is Rett Syndrome Awareness Month! So much news to share:

We won 250K last night from Pepsi – all funds go to research!

Two new gene therapy projects are announced!

And last but not least, a bunch of Cure Rett Syndrome supporters braved the pouring rain and kicked off the Awareness month by appearing in the crowd of the Today show. One of the moms got picked for a makeover…

I managed (in an odd way) to cause a neighbor (who I’m friends with) who was dressed up for work to tumble into a huge puddle (it has been pouring rain all day) and get completely soaked in front of the morning elementary school drop off crowd.

The dryer broke on Monday. It spun, but did not heat. We managed to install a spare (yes, don’t ask why we have a spare dryer, but we do). Jeremy and I moved the spare dryer up 2 flights of stairs late Monday night. Today the washer broke. I told everyone not to get their clothes dirty.

I had a handyman come in for the past two days to install cabinets in the basement. Turns out, we did not get the right size cabinets. A days work must be undone and redone.

The largest picture window in the house is leaking. We thought it was because the window was installed incorrectly (a lot of things in the house are not installed that well). Turns out that there is a hole in the roof. Yes, a hole that is just pouring water into our walls. A tree hit our roof and made a hole in the roof and even broke some 2x4s from the mega storm this summer. We just never noticed the hole in the roof because you can’t see the damage from the ground.

I asked the handyman who was installing the cabinets to find a tarp to put on the roof (because it’s pouring rain) to cover the hole. While driving to Home Depot, he drove over a nail which caused him to have a flat tire.

The power went out for 2 hours this afternoon.

I went to Edda’s school where as soon as I said hello to her, she fell asleep.

Ahhhh, life. This is just how it goes.