Wednesday, April 28, 2010

Warning: this is a poop post.

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.

Tuesday, April 27, 2010

No child left behind.


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".


Monday, April 26, 2010

I know, I'm a little behind the times.

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.

Saturday, April 24, 2010

Crafty day!

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.


Friday, April 23, 2010

End of the work week.

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.

Wednesday, April 21, 2010

Seeing a lot of doctors.

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.

Tuesday, April 20, 2010

Crappy day!

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 :)

Monday, April 19, 2010


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 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?


Sunday, April 18, 2010

Luncheon with Donald & Aunt Liz's Avocados

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.

Knitted socks!

I gave these to Bette! I hope they fit :) Now I'm off to knit something for my pal Annie.



Yellow balloon fair.

Yesterday, we went to the Yellow Balloon Fair. Ponies, pizza, mardi gras beads and cotton candy.


The lady leading the ponies around in a small circle did not seem very excited to be there, we had come during the last 20 minutes of a 4 hour fair, so it was understandable that perhaps one tires of helping small children up onto ponies and leading them on a ride to nowhere - even though the weather was fantastically beautiful. This weekend, I have been feeling a little like I'm going in small circles - one foot dutifully going in front of the other, but going nowhere in particular.

I had a chance to introduce Edda to a bunch of neighborhood people who, I think, did not know of Edda's existence, which is a little strange to me. This is the first year where Edda does not come or go with Vince on the daily school walk (Edda's morning school bus come at the exact same time as Vince's walk to school and she comes home about 30 minutes after he's home), so there have been some folks that I have met without the company of Edda. Edda had a nice time at the fair - walking around and enjoying the sun on her face.


Saturday, April 17, 2010

Dog park.

I have not been able to make the dog park during the weekdays, my morning walk to drop the kids off at school puts me about 15 minutes late for the weekday gathering. I try and make it up to Ruby by making sure she gets to see her doggie friends on the weekend, I usually go by myself, but it was so nice this morning and everyone was up at 7:30 (me being the latest one up), we thought we'd make the dog park a family adventure. We were ready to make the dog park by 8:30 am. We scrambled to feed/dress the children (throw in a tantrum or two) and we were out the door at 8:20 am. We showed up at 8:34 am and everyone was leaving the dog park (boo!) because today was opening day for softball! Turns out, Vince knew a bunch of kids on the team, so he was excited to watch.


Edda was not as interested in the game, but enjoyed the nearby slide.


OK, maybe tomorrow Ruby.

I finished another knitting project. Will post photos after giftee receives it! I was a little nervous because this is how much yarn was left over (Lego figure for size reference, if you don't know how big a Lego dude is, you don't live in my part of the universe):


Friday, April 16, 2010

Potato chips.

For no particular reason, I am in a bit of a funk. All day, I have wanted nothing more than to eat some potato chips (we did have some in the house, which is surprising - probably left over from a party). Jeremy came home and told me all about his super-fantastic-day and as we have a conservation of good moods (first law of moodiness) in our relationship, I told him that he sucked a bunch of feeling groovy mood from me to make his day super-fantastic. I am happy for that he had a super-fantastic day, but I want some of that good mood back.

Vince and Jeremy went to see How to Train Your Dragon tonight. Poor child, he's the last kid on the block to see this movie, all the kids have been talking about this for weeks and finally we get our act together enough to take him to see it. We were hoping to invite a friend, but everyone (under 10) has seen it already.

For Vince

download The Robot Remains Remixes HERE

Thursday, April 15, 2010

Buying prevacid and other news.

I forgot to buy Prevacid at the drugstore yesterday to treat Edda's night time crying. I remembered just at 5:30 pm as we were headed out to a slightly mandatory au pair/pizza/charity meeting and Edda cried during the whole car trip as if I was slowly torturing her by making her leave the house and have a slice of pizza. She eagerly ate the pizza (2 slices), but on the way home, large tears came down over her chapped cheeks. But 2 hours after the pizza, right before Edda went to bed, she pooped and then went to bed peacefully. So if I had bought the Prevacid yesterday and given it to her with the pizza dinner, I would have thought, Hey! That worked great! and kept giving her the medicine. What a crap shoot.

The Accord needed $1000 worth of repairs today which was on top of the $400 spent on a new set of tires. It was an expensive day.

Vince had his 8 year-old well child checkup today. He's so grown up now - he needed a couple of shots and he did not wail or protest. He cried a little bit, but held still and lived through it. We soothed the hurt with a slushie from 7-11.

Wednesday, April 14, 2010



Every morning, I walk four houses worth of kids to school. This morning walk may be the best part of the day, except for the moment I fall asleep at night (I do like to sleep). Ruby comes along and gets a treat from the school crossing guard! After I drop the kids off, I run for 1.5 miles around the neighborhood. "Run" is too ambitious a word, it's more like slow trot.


Tuesday, April 13, 2010

A little too much scheduled.

I like keeping the house humming with activity, but ever since we came home from vacation, we have been just a little too busy. Jeremy's been out of town and back and furiously working, I've been trying to manage work which has been more challenging than usual and I've made more trips into the office - lots of attorney's phone calls and arguments. Also, as I become a more experienced patent examiner and I'm ready to take on more responsibilities, my work is being scrutinized more carefully by reviewers, which has also been a little stressful. Vince has a schedule which needs carpool and neighborly coordination. And Edda is still crying at bed time. Again tonight, it was the same thing, totally happy during the day and at all meal times and at school. But when it's bedtime, plaintive crying for no apparent reason. I guess we'll try the Prevacid again and if that works, I guess that'll be that, but I suppose if it continues I'll need to set up an appointment with a GI person (although it could be something completely different than her gut). I am a much calmer person when Edda is happy all the time (and it's OK if she's mad if you don't have the right video in the DVD player or if she's tired of waiting in line or something that has some REASON to be mad/sad), but this inconsolable, unknown crying which lasts a long time is so hard to take. I hope it ends soon.

I'll leave you with a little bit of knitting, which since this photo was taken, I've managed to mess up because of miscounting # of stitches on the way home on the Metro. I'll have to rip out some rows and start again. Oh and as an aside, I met a person on the Metro who saw me knitting and told me she reported to Wendy of Wendy Knits! fame who is a manager at the Department of Labor. Knitting has it's own online world which is incredibly active and there are superstars and Wendy is one of them. Ahhh, so close to (knitting) fame! Almost as exciting as the day I let Bob Costas cut in line in front of me at La Guardia or the time I talked to Mia Farrow for 10 minutes about how warm to keep a house.


Here are some things I find interesting on the web:

A review of the Bard Conservatory playing at Alice Tully Hall, you can see Bob, Jeremy's dad, in the photo in the background playing cello.

A science catfight! Is global warming caused by man? Jeremy's coworker from UCS got onto Colbert Report.

A girl with Rett Syndrome composes music and types full sentences.

Monday, April 12, 2010

Photo capability back!

Seth saw that I was going to be out of photo-commission for a while and offered to let me borrow his Canon 30D, which is a couple of notches better than my regular Nikon D40.


It has been 18 years since I last used a Canon, when I bought a Canon EOS 650 which I hated so much. I replaced it with a Nikon F2 which I liked much better. I have been more of a Nikon girl ever since, but I know more professional photographers use Canon and I like the lens selection better with a Canon. I'm very excited, there are separate controls for the aperture and shutter speed which makes me very happy. (OK, this is a boring post). I really need a haircut and Edda just woke up again. She's still not sleeping well. Sigh.

Our Last Weekend Trip

Last weekend, Rena & I took a trip to Death Valley, Las Vegas, Victorsville CA, Los Angeles and back. There are several pictures taken in this trip for sharing:
1) yellow wild flowers along CA route 58 between San Luis Obispo and Bakersfield
2) mountain top wild mills along CA route 58 south of Bakersfield, CA
3) a sand dune in Death Valley
4) Abandoned borax factory in Death Valley. It was once operated by Chinese laborers who made US $1.30 a day
5) East entrance on Nevada side of the Death Valley
6) With Uncle James and aunt Jane at their house at Victorsville, CA
After leaving Victorsville CA, we went to Los Angeles to have dinner with uncle Joseph, aunt Diana and Aunt Liz. Next morning, Rena, Liz and I picked a lot of Avocados from Liz's backyard. Her Avocados not only very big but also very tasty. We picked about 40 of them, 1o to Joseph, 10 to Liz and Helen, we had 20. All of them were hang very high.
I have to say, her avocados and grandpa's orange are the very best.

Friday, April 9, 2010

IEP meeting.

It's Friday evening - Vince is out with friends and Jeremy is flying somewhere over the eastern side of the United States. I'm home on the couch watching Edda watch Finding Nemo. I tried to use mom and dad's old camera, but it's so unusable and unresponsive, it feels like I'm taking photos back in 2002. So I'm wondering if I really will go without photos on this blog for a month or if I'm going to go out and buy a point and shoot camera. Jeremy's always thought that we needed a P&S camera as he hates lugging my camera around and sometimes he'd like to take his own photos.

The lack of photos means that I need to focus more on my writing which places me in a spot I am a little uncomfortable with because I don't usually proofread my entries and I am a lazy writer - run on sentences, nouns and verbs which don't match, a lot of extra, useless words and lots of cliches.

It has been an exhausting week, we still are not unpacked from the New Mexico trip, I've had a stressful week at work which has compounded my jet lag to make me a little insomniac. Also, I went to Edda's yearly IEP meeting on Thursday, which was fun and productive, but also exhausting in it's own right so I'm beat.

It has been a good year for Edda in terms of school, but also a good year for me. At last year's IEP meeting, I was an emotional mess. I was still trying to work out my own educational goals for Edda. Was inclusion appropriate? Was a special needs school appropriate? I was fanatically, frantically and irrationally focused on Edda learning to read. Why was I focused on this goal? Well, at the national conferences on Rett, there are speech therapists who get up and talk about Rett Syndrome girls who can read, there are murmurs among parents who say that their daughter is included in a regular classroom and doing 4th grade work. I was enchanted and determined. So last year, I diligently went to seminars with Linda Burkhart and I bought a touch screen computer and switches and I made flashcards and laminated them. All this work led me down a road of intense self-imposed pressure that if I couldn't make this work, I would have failed Edda. There were a lot of stressful sessions (not for Edda, who for the most part, enjoyed them) where I'm holding up pictures of animals/letters/number/pictures for Edda and trying to make her choose with her eye movements and I really couldn't say for sure if she understood anything, everything was so inconsistent. I was going crazy, I needed to take a step back.

This year, I'm calmer and happier. I am not staying up late laminating cards. I am not stressing out about Edda learning to read, I'm focused on Edda enjoying her life and more importantly trying to balance everything so I don't go crazy. It's not to say that I won't go back to laminating the cards and looking into other more high-tech modes of communication for Edda, it's just that I had to take a little mental break from Rett Syndrome (if that is really at all possible) and enjoy Edda for just who she is at this moment and not just spin spin spin around in circles about what I should/could/need to do for Edda just so I can keep my head on straight.

Edda's IEP meeting was very relaxed and informal, since her school isn't changing and her services will still be the same I felt very much at ease - although it was very hot because it was 91 degrees outside and the school's air conditioning isn't scheduled to be turned on until next week.

Wednesday, April 7, 2010

Little notes


  • Everyone back at school today. Shorts and skirts, it's hot here. Edda's in ballet's 2nd position, it's a wonder she doesn't just tip over. (Now I look at the photo again, and it does appear that she is tipping over onto the couch).

  • Vacations (or any out of routine thing) seem to amplify Edda's disabilities. While we were on vacation, I would have a little pangs of despair because even though we take Edda everywhere and try to help her have a good time and encourage her to interact with bubbles, Easter egg hunts, playing in the river, getting to know her cousins, I know she'd rather be watching Blue's Clues in the comfort of our living room which somehow just kills me. When I'm in my regular routine, I don't brood about it as much, mostly because of a self-preservation thing, but on vacation in the middle of nowhere, there is a lot of down time to think and brood.

  • Both Jeremy and I came home to boatloads of crap at work to do - I'm trying very hard to hold it together this week at work, it's bursting at the seams. Jeremy is traveling this week and he had to attend two meetings over the phone while going through airports. One while waiting to leave DC, the other on the layover in Chicago. Blah, blah, blah.

  • Edda has not been falling asleep very well. A lot of screaming and yelling for about 90 minutes. It's usually my job to put the kids to bed, but it has been trying for the past week or so. Maybe jet lag? Maybe reflux? Jeremy thinks Edda and I are arguing because often after 45 minutes of screaming and yelling, Jeremy takes over and not 3 minutes later, Edda's asleep and sometimes so is Jeremy.

  • Eliana is taking an evening photography class so I'm letting her borrow my camera for a few weeks. I'm going back to the parent's camera, the Kodak EasyShare C533. We'll see what I can coax out of it.

  • The Strickers have the most beautiful and thoughtful home. Not super fancy, just well thought out and most of all clutter-free and very organized. Edda loved their house, a ranch style house on one level and nothing to trip over. Perfect Edda environment. Everything has a proper place (or as my mother says, it's purple place) and I'm trying to figure out how to make our tornado of a house more like theirs which I know is completely hopeless. My goal this week is to hide the trash cans and the laundry baskets.

  • Taxes. Still haven't finished them, but I think I can e-file early next week.
  • Mystery $10 present

    So this is Doris' birthday present to me. (Sorry for not getting it posted sooner, Doris) Laff the funny thing is that I knew what Doris was getting me before she did. She sent it from some website that's gives out random gifts that are at retail, worth more than $10. So here it is. Thanks sis! It's a "Le Pinch". Some wind up toy that supposed to climb over books and stuff on a table. If I had a video iPhone, I would record a video of the thing in action, but sadly, I'll wait until June. :)

    Tuesday, April 6, 2010

    Easter Sunday.

    Still in Austin on Easter Sunday, we celebrated with a hunt and Cascarones!


    Toured Austin. Doesn't that wheelchair look too small for Edda? In January, I called the wheelchair company and they couldn't believe that I needed to buy a wheelchair, they insisted that they lasted at least 4-5 years. So I said OK and now I look at this photo and it looks too small to me...


    A pedicab ride:




    Monday, April 5, 2010

    Austin bound.

    On Friday, we flew to Austin where we spent the weekend with our pals the Strickers!

    Vince learned to fire rockets (I got a good picture of the Port-A-Potty Rocket!)




    Here's Edda hanging out with the folks hiding from the sun during the rocket countdown (you can see them wayyy in the background of the flying port-a-potty picture).


    Sheila has a new job with the school system where she does hearing and vision testing for the kids all over the county. Turns out I no longer have 20/20 vision in my left eye.


    Coldness and Gila Cliff Dwellings.

    After a few hot days, it was brrrr cold. We wanted to go to the Gila Cliff Dwellings, but we were flooded out:


    And went to a trout hatchery instead, where the manager of the trout-ery was very nice and informative about his operation...


    Back to Silver City to have lunch at Jalisco's cafe, where Ruben had fun tormenting Vincent ;).


    Into the city.

    We drove into the "city" (45 minutes, Silver City) and enjoyed a hot chocolate.




    There was grilling and s'more roasting. The light was just beautiful at this particular moment.