Month: April 2010

I think what has been bothering Edda for a few weeks now is our regular (ha!) enemy, constipation. I think the poor girl has lost five pounds worth of poop in the last 5 days. It’s a fine line between uncomfortable constipation and entire outfits that need changing twice a day.

I like to keep Edda on a once-every-other-day schedule because this means that she can make it to the potty for her poops about 80-90% of the time which is just fabulous! But any less often and Edda gets grumpy and any more often, she doesn’t have enough control (to help us) make it to the potty. The amount of Miralax that Edda ingests each day is a little variable. You have to mix Miralax into liquids like juice in order to ingest it and Edda’s liquid intake is highly variable (mainly not drinking enough, but every once in a while, she’ll surprise you by drinking two cups at a go), so the amount of laxative ingested each day is a little different.

Anyways, it’s been a messy five days or so (at school mainly – I need to send them some cookies or something), hopefully Edda is feeling better. She’s still a little fussy sometimes, but a lot less than before.

Vince has been engulfed in a three-day-long standardized test this week at school. You can read about the Terra Nova 2 test: here. All 2nd graders throughout the county take this standardized test and they have been preparing for more than a month. Every week, he got thick practice packets with little scantron bubbles to fill in with a number 2 pencil and we plowed through them all.

Vince also really wanted to participate in an after-school sports program which is sort of introduction to all sorts of sports. This show of enthusiasm was really surprising to me. He’s kind of been nervous about being on any sort of athletic team where there is a clear winner and clear loser. We even needed to get a mouth guard – a strange object in our house. Last week, he learned how to play flag football. This week it was baseball – he said he played “first plate”.

I finally learned how to get photos off of my phone. I know I’m a little late to the party, but what can I say, I’m almost 40, I am an old dog. I got all excited a few weeks ago when I got my first photo “text” message because I didn’t know my cheap-o phone could do that, but apparently it can. Woo hoo. So this blog post, you are treated to terrible quality photographs, but at least there are some.

On Sunday, we drove into DC and went biking with the scouts on Beach Drive. On weekends, they close the road to traffic and you get to ride along a beautiful tree-lined road and next to what I assume to be Rock Creek. The spandex-clad folks with the fancy bikes were out in full force. We had to take 2 cars, but we managed to bring 2 adult bikes, 1 kid bike, 1 special needs trailer, 2 kids, 2 adults and 4 helmets. Who needs the freaking minivan?

Both adult bikes have large baskets and lots of headlights/tail lights for commuting in the dark. Kind of a pain for recreational riding and a pain to fit into the car.

Edda’s seating needs to be a little better. There isn’t enough side bolstering for her to sit straight up the whole time. Jeremy is considering putting her car seat into the trailer. Edda slept on the way out, on the way back, she needed a little bit of Barney played on Jeremy’s Crack-berry to keep her company.

Almost a year ago, I got Vince the next-sized-up bike at Goodwill for $20, but he is resisting going over to the hand brakes and gearing. A bunch of kids his age are on to bikes that are even bigger than the next-size-up bike. I could see him up near the front of the pack, pedaling ferociously to keep up with the leaders with the geared bikes.

Today was a much needed down day for the family. Not a single thing scheduled which is rare for us on a spring Saturday. Vince played with the neighbors, Edda watched some TV, I worked on some crafts and Jeremy took a nap! All good things.

We got a new drill, but we did not actually get around to drilling anything:

I made some crafty felt flowers.

It is the end of the week! Hooray! I’m feeling much better because it’s my favorite time of the week, Friday night.

Jeremy is making a 1 day business trip to Chicago today – it might be the first time where he’s gone on a business trip without any extra underwear in his carry-on. He was suppose to get up at 5 am to make his 7:15 am departure time, but the alarm didn’t go off. I woke up on my own at 5:30am and then mumbled to him that he was late already and then I heard mad dashing around the house and I suppose he was out the door at 5:38 am. He did make the flight and I think is getting on his homeward bound flight right now for an ETA into our house at midnight.

We did manage to give Edda a haircut on Wednesday night.

I know you can’t look a borrowed camera in it’s mouth, but the f 3.5 aperature is just killing me. My indoor shots are all way blurry. I guess I just need to set the ISO higher.

In other interesting news, we are slowly getting the school system to work with Edda on using eye-gaze computer technology which is a pleasant surprise. I have not really pursued this kind of equipment for Edda on our own for a number of reasons, mainly because of cost and also because I know, like my beautiful piano or stationary rower which were kind of pricey things (but not as pricey as the eye gaze computer), I start off strong and excited about such things and then as it becomes clear that it’s not instantly amazing and rewarding and is a lot of work, it ends up gathering dust in a corner and making me feel guilty. This is a pretty lame assessment of the situation, but it is what it is.

So the school is going to do a lot of the work for me and they are excited about it. Although they did warn me that it’s not easy and they have tried it on a number of other Rett girls in the county already and it was hard to get calibration and/or a long enough dwell time to make the eye gaze a produce a EUREKA! moment. I was not surprised about the difficulty in using the system, my surprise was hearing about the other Rett girls who were trialing eye-gaze systems. I know a few other Rett Syndrome families in the county, but the county’s augmentative communication specialist seemed to imply that there were more families than those I am aware of and apparently they are more proactive than I am in pursuing communication goals. I feel a little like I’m a day late and a dollar short.

This is also kind of a lame reason for not pursuing these special communications systems, it’s more of an engineering reason rather than any sort of educational reason. When Edda was diagnosed 4 years ago, the eye gaze technology was really not readily available and the Rett Syndrome community was excited about the Tango. The Tango is a touch screen driven communcation system which is rather cute. I was talking on the phone with the Tango sales rep a few years ago and complaining to him – why does it have to cost $8,000? Couldn’t they just put their software on an iPhone and make it available for something like $500-$800? He answered back that the Tango did so much MORE than the iPhone and I replied that the Tango DID NOT MAKE PHONE CALLS. It now occurs to me that the could put it on the iPad and hopefullly it would still be quite a bit less than $8,000. Anyways, I know it’s a supply/demand situation, there are never going to be as many people who want augmentative communication devices as those who want the iPhone, but I’m hoping that the prices go down. $8,000 – $17,000 is way too much money for me to spend on something that I think needs to be cheaper. I’d rather buy a minivan.

Today I made the following appointments in the span of 15 minutes; a wellness check-up for Ruby, an orthodontist consult for Edda, eye check ups for Vince and me (at Costco!). I also placed a phone call to our health insurance to try and lobby for Edda to get pre-approved to go to an ophthalmologist (who has been recommended on a special needs email list I subscribe to and also has a three-month wait for an appointment) for her eye check-up rather than going to Costco like the rest of us, but it was a big FAIL. I knew that regular eye exams are not covered (which is why the rest of us are going to Costco), it’s only if you have an eye disease and then our insurance kicks in. I tried a number of different approaches, but I was shot down each time. It’s a small thing, but still irritating.

Bad mood continues; hope to shake it soon. Can you believe that they have invented fake digital windows that you can hang on your wall which actually changes perspective as you move around the room (see video – cute baby and music involved) and not yet found a cure for Rett Syndrome? It baffles the mind! Please take 2 seconds and vote here for RSRT (charity #20), we want to keep our lead to win $20,000 for critical research! Many thanks 🙂

When Edda was first diagnosed with Rett Syndrome, my brother Donald, sent a lovely letter to one of my favorite advice columnist, Cary Tennis (who now is undergoing treatment for a rare cancer) from Salon.com asking for general life advice on my behalf. You can read the letter: here. I read it at least once every few months and I read it again today.

There is a part that says (“I” is Cary, the “sister” is me):

But I try to do more, too. I also try to sing the song of how what we are required to do is always a gift. I am singing that song right now, standing under your sister’s window in the snow.

It may be a gift we don’t like — and now I am singing to you, sister — but we feel obligated to act grateful. I don’t know if you believe in God or not, or a benevolent force, or anything beyond yourself, but in cultivating this feeling I am talking about it helps to live in the conscious presence of something beyond yourself, something that you are in essence working for, so you can say, “I’m doing this for you, whoever you are. I’m lifting this burden for you.”

Because otherwise at times it’s: Why lift this burden at all? Why not put it down in the snow and walk away?

Sometime I read this and I agree with this and other times I read this and I think that it’s complete crap. All I know is that today I wanted to take Edda and leave Rett Syndrome in the snow and walk away. Nothing particular happened today – I took Edda to the dentist and the pediatrician. Both regular check-ups and both practitioners awesome at what they do and are familiar with Edda, but just the lifting, calming, explaining, questions and planning all wore me down today.

It’s also strange how these very emotional moments are interspersed with almost completely superficial choices that one has to make, Coldwater Tide or regular Tide? Homework now or later? Chocolate or vanilla ice cream? White or green tile?

Today, Rena & I had a lunch with Donald and his friends at Menlo Park, CA. We enjoyed it very much. Only two friends were from the first group that we met several months ago. They are all young and energetic. Very good. After lunch, Mom gave 4 avocados from Aunt Liz’s tree. They are huge and delicious. Hope Donald will enjoy them.

The weather was very nice today. We drove more than 400 miles to have lunch. Afterward, we dropped by at one of our classmate’s place at Morgan Hill, CA to look at his chicken farm, pretty impressive.

I gave these to Bette! I hope they fit 🙂 Now I’m off to knit something for my pal Annie.