Pros:
Pretty much housebroken.
Quiet when crated.
Super cute.
Knows how to fetch.
Is making us all go outside on walks more often.
Cons:
Loves to chew – shoes especially.
Loves to nip – especially when excited.
Barks when I’m petting Ruby.
Makes Ruby insanely jealous.
We are all a little tired these days. Edda, after her first fabulous night on Keppra, has returned to her old 4:00 am wake up time. The new pup, Maxi, usually can make it to 5:00 am before needing to go outside to pee/poop. As if that wasn’t enough to keep everyone a little sleep deprived, Jeremy and I are both having our own sleeping issues – Jeremy wakes up at 2 am worried about something or other that is due the next day and I wake up several times a night thinking about my to do list or thinking that at any time any random pipe in the house will burst pouring water between the walls.
Here’s a photo of the young violinist and his grandpa.
Maxine! A 4-month-old black lab mutt. On the smallish side – 16 pounds so far and gentle disposition.
We picked her up from her foster home through Lab Rescue. She went trick or treating with the kids last night. Here she is trying to eat Edda’s costume.
Hey – give me back that feather!
Ruby is not thrilled. Maxine is trying to make friendly, but Ruby just gets up and walks to another room. Maxine has pooped in the house twice already.
We did go to the rally to restore sanity yesterday. We left Edda behind at home and I felt a little bad about it because she comes along to 99% of our crazy outings and I thought she could manage this one, but in the end it turned out to be a good idea because the Metro was so packed, the three of us just managed to barely squeeze onto a train (there would have been no room for Edda’s wheelchair) and by the time we got downtown we were all drenched in our own sweat from the heat generated from 10,000 people in one subway car.
We left the house at 11 am – the rally was suppose to start at 1 pm. We could not get into the rally site because it was already jam packed full of people and they were closing the entrances to prevent more people from trying to squish in.
We did not see the stage, but we heard the national anthem (held our hands over our hearts and cheered) and we heard the voice of Jon Stewart and Steven Colbert, but we were left meandering the outskirts of the rally.
I went to the kids’ Halloween parties/parades yesterday. Vince was Luke Skywalker
Edda showed off her Big Bird-ness at the parade.
Her classroom party was nice – I met a lot of other parents and the kids were nice – although Edda was asleep the whole time I was in the classroom.
I ate her Halloween donut for her.
Even though everyone was very welcoming and nice in Edda’s class and everyone knew her and wanted to help her play Bingo and make her crafts and admired her costume, these parties sometimes wear on my soul. I left a little early and drove around town to find some french fries to eat to make me feel a little happier. I came home about an hour later to 2 happy kids and water flooding the basement. Yes. Water was flooding the basement from an improperly installed pipe. We ran around like headless chickens looking for the water main which we found, but not without freaking out and making some areas of the basement very, very wet.
Often people ask me about Edda’s neuro, gastro, ortho, etc. and I like to say that we have none! (Which is not entirely true… because we do have some that we’ve seen, just none that we like and want to go back to).
So now that we’ve decided that Edda has seizures, we finally got Edda into see our local (new to us, but not new to other Rett Syndrome families) neuro and after some discussion (without Edda’s input as she was asleep) we got a script for Keppra. We started her first dose last night and for the first time since August, she slept through the night which is AWESOME, but she’s been tipsy, tipsy on her feet all day. We’ll see how it goes.
I love our new neurologist. He’s a keeper. He’s also in the same building as our primary care doctors, so I multitasked and got the adults all their flu shots right before the neuro appointment. Gotta take advantage.
This week we trialed the Dynavox Eyemax at Edda’s school. This is the 2nd machine we’ve tried after the MyTobii a few weeks ago. The company that makes the Dynavox machine has long been the leader in augmentative communication devices and I was really hoping that Edda would be able to use the eye gaze effectively. You can see the cameras on the bottom of the device in the following photo – they are located in the little black bar…
Edda had a really hard time calibrating her eye gaze with the camera. We tried a few times – different distances and different positions. It was not easy. Edda soon tired of the whole thing and:
Edda’s teacher and I both used her nap time to try and calibrate our own eyes and we found that it was even difficult for us to get calibrated. The eye gaze capability of this machine does not seem as robust as the MiTobii which seemed to have no problem with calibration. So comparing the two systems so far, the MyTobii is out ahead.
I’m not sure how likely the school system is going to pay for these systems – at $17K each, it’s a large expense for any cash-strapped school system. We need to show that Edda has functional use of the machine, that she can answer questions or categorize things and at both of these eye-gaze trials, she failed to show either ability although I acknowledge it is like trying to play the piano without lessons and practicing.
I’m so happy with how this turned out.
I think Edda is happy too. Now to keep the feathers out of her mouth!
