Jeremy took Edda today to Target to get some passport photos. After 1 hour, a handful of goldfish crackers, 3 attempts with a Polaroid camera, they left empty handed. The criteria for a passing photo – looking up, no smile, no teeth showing, mouth closed. We tried 60 times at home tonight, I don’t know if we are going to be successful anytime soon.
After we got home from the camping, we dried off, threw some laundry into the washer and turned around and headed out again. This time to the MD/VA/DC Rett Syndrome family picnic. Great turnout this year – and what do you know? It was not raining! A big plus! Whenever I get together with other families who have a daughter with Rett, I feel like we are all somehow connected by a spider web – a strong, light and invisible line – something that transmits a little vibration to each other where ever we go. OK, that was a little wacky. But you know what I mean.
Now that we are home, warm and dry, I can reminisce and wax romantic about what a great time we had camping yesterday and that we are total studs for having lived outdoors in a downpour that lasted from 3 pm yesterday to 7 am today. It was so extremely wet – even Ruby was a little put off.
There was hiking:
Bonfire and s’mores:
Bonfire #2 and skits:
And Edda, the true trooper, who joined us in the rain for dinner and complained through the root beer floats – as soon as she was in dry clothes and tucked into a warm sleeping bag, she feel asleep within 45 seconds and pretty much slept through the night.
We bought some new shelves this past weekend. I always think buying more storage or organization stuff will somehow magically make the house cleaner or my life less messy. I know it never works, but I can still dream my little dream.
Jeremy went to the dentist today – no cavities! (He never gets cavities, he’s been blessed with extra hard enamel.)
Jeremy volunteered at Edda school today. Today was the day that all kids go around to different booths and talk about disabilities and how sometimes kids with disabilities do things differently than most people, but it doesn’t mean that they can’t participate. Jeremy ran the booth where you got to play tic-tac-toe without talking, just using a big mac. He said that he had a nice time and the kids really got into it.
While we are still in the midst of working out our van purchase with the Bruno seat, we’ve been working with Edda to see if we could teach her to help herself into and out of the car. She’s just a smidgen under 50 lbs now – so it’s important that we keep the lifting to a minimum and also since Edda’s mobility is one of her strengths, it’s nice to be able to use her abilities of stepping up and standing to help us out and to challenge her body in different ways.
Jeremey’s worked out this system with a BOLMEN stool from IKEA so that Edda can step up onto the bench. Then we spin her around so her butt is facing the car and then we ease her into the seat while tucking her head a little so it doesn’t hit the door frame. Very little lifting on our part – just a little spotting and steady-ing; then you reverse the process to get out of the car. There is a small problem when she falls asleep in the car and then you want to get her out – sometimes I just sit in the parking lot and wait for her to wake up and then I go into Target (somehow this always happens at Target) with her. I have found that a copy of the latest People magazine is helpful in passing the time in that situation.
IRSF has announced the first clinical trial for a drug which might help with the symptoms of Rett Syndrome. The clinical trial is funded with $200,000 presumably from all the fundraisers that parents and friends have put on over the past few years. The clinical trial is for a drug which is a FDA approved drug called Increlex which is used to treat people who are short, it’s a human growth hormone.
I spent some time reading the original paper from MIT which talked about mice which have Rett Syndrome who were given the growth hormone and how much better the mice did with the human growth hormone. There were 9 areas that saw improvement, including locomotion, breathing patterns, cardiac patterns, life span, and brain weight. All this is encouraging, however, the scientists were also quick to note that all the mice still developed all the symptoms of Rett and did also have a shortened life span, albeit longer than the life span of mice with Rett and without treatment.
I also noticed in the MIT paper, that the drug was first administered when the mice were 2 weeks old and that it was a daily injection. I presume that at 2 weeks old, the mice were pre-regression – that the drug was given before all the definitive symptoms appeared in the Rett mice. Most human patients (Edda included) with Rett develop normally for about 18 months and then there is regression or loss of skills – something that Rett has in common with autism. So I don’t know if the drug will do anything for Edda as she is post-regression, but I’m eager to hear how the clinical trial goes. It would be great to have some alleviation of some of the symptoms.
The school system serves a lunch called Chips Olé! and Vince has always asked to buy lunch on Chips Olé! day. This year, since Edda started kindergarten, she’s gotten the opportunity to try Chips Olé!, but I wasn’t sure she was going to dig it. During back to school night, Edda’s teacher mentioned that everyone loves Chips Olé!, all the teachers stop by the cafeteria to see if there are any extra servings – something about that olé part is really yummy, she said. (For the record, Edda liked the chips and not the olé part). We figured that Chips Olé! was just taco mix on top of tortilla chips. We tried to recreate it at home.
The stove/oven stopped working at Sunday night dinner. All of the dinner (a mac and cheese variant called “Seth-a-roni”, meatloaf and string beans) was cooked, but the cupcakes were still raw. The kids made a trek over to the neighbors to borrow their oven. Not only did they come back with baked cupcakes, they also came back with half a huge chocolate cake!