Wednesday, May 30, 2012

School violin performance.

Vince's violin performance at his school. In an overheated gym with not enough chairs. Ugh. At least Edda had her own chair and they played Ode to Joy which is the best song evah! (Except for Chopsticks or When the Saints Go Marching In or maybe even Boogie Woogie Bugle Boys of Company B).


My mother came and gave Edda a hand massage. So sweet!



Tuesday, May 29, 2012

Hometown Holidays

Vince marched in his last parade Rockville Memorial Day parade as a cub scout. This is our third parade - as the temperatures were hot, hot, hot, Jeremy and Edda opted to go grocery shopping while I watched Vince and his buddies march in the heat. Can you tell in this photo that no one is especially thrilled?


I also got the pick up point wrong so I was the last one to pick up my tired sweaty son.  He was a little bit mad at me for making him wait so long.


As an aside to my brother, I think you would have liked the float the the scouts had to walk behind. A car which proclaimed the owner's love of Taz.


Monday, May 28, 2012

Long weekend.


We spent a lot of the weekend coughing at each other. Jeremy was the sickest - on Saturday, we all spent the day indoors and watched TV all day.

We did go to Sunday night dinner - Vince did my nails.  I tried to convince him that I should paint his nails, but he would have none of it.  I even suggested a manly color and still he demurred.  Can you believe it?  But he eagerly painted my nails, each a different color.

How many bottles of nail polish can one teenage girl own? A lot!



Sunday, May 27, 2012

Vince (and Doris) duet.

Vince has been taking violin lessons for a couple of years now. He takes lessons from a person who lives around the corner from us - Ms. Kelly. I met Kelly because our dogs are best friends - Inky and Maxi love a good rumble on the tennis court. Anyways, Kelly and I are pretty good pals and she suggested that I play the piano accompaniment to Vince's violin piece.

So here it is, Vince's great performance and my first performance since the late 1980s. I am so happy my mom was there to see this - it brought back many memories for her of sitting through many of my own childhood recitals. Also happy that my father-in-law was there to hear us too, although it makes me nervous that he is there as he is a professional and all ;).

Friday, May 25, 2012

Bus lift

Right after we got the stair lift installed in the house, I got a call from Edda's teacher suggesting that we use Edda's wheelchair and the lift on the school bus to get Edda to and from school safely. I hadn't even really thought about it, but of course, it makes perfect sense. We have always had Edda walk up and down the bus stairs with a lot of assistance, but she could do it most of the time (up especially, down not so much). Now Edda weighs so much, it is very difficult for us to manage her safely up and down the bus stairs.


I suppose this is a milestone of sorts, I had my camera ready and took photos, but it is a little heartbreaking at the same time.


Thursday, May 24, 2012

Breezy point.

Jeremy and Se Hyun went with Vince's fourth grade class to Breezy Point - part of the shoreline of the Chesapeake Bay, to see for themselves what the Bay is like. They've been doing lots of science and history lessons about the Bay - so today they got to see catch fish and learn about crabs. They got to hunt for shark teeth in the sand. It has been rainy all week, but it was beautiful today! Jeremy manned that crabbing station during the afternoon. Here he poses with his pal - "Crabby". (The girl's name is not Crabby - it's the crab's name).


Here's Vince seining. I asked him what he caught and he said he got some rocks.


Vince, of course, got in trouble for actually swimming in the Bay (you were only suppose to go in knee deep).


Go Dragons!


Wednesday, May 23, 2012

In the rain.


My children are getting so big.

Monday, May 21, 2012

Air and space museum

A few weeks ago, Edda and the rest of the 2nd graders in her school went to the Air and Space Museum. Neither Jeremy nor I could make it downtown, but Edda's teacher was kind enough to send little missives throughout the day on Edda's aviation experience.

 It has been a quiet school year for us - my major goal for this school year was to try the eye gaze system for Edda - and we did manage to do that, it pretty much showed us how cumbersome and not user friendly it was to use. A huge disappointment, no one really wanted to touch the device, not the way everyone loves to touch their iPads.  We are looking for something to make our lives easier, not harder.  Our eye gaze trial seemed so long ago, it's hard to even remember that it was during this school year that it happened.

Air and Space Bus

I had a friend ask me if I liked Edda's school, asked if it could be better in some way. Of course, I think things could always be better, but it's hard to say how I would make it all better.   This year, we considered moving Edda to the most restrictive schooling in the county, it would be totally segregated from the typical student population, but we were hoping for a more therapy based program (it would have had a pool!) and less academic based program which I think isn't really playing to her strengths.  As a third grader next year, Edda needs to take the standard testing for all third grade students which I think is a waste of time (really not only for Edda, but also for Vince, but at least for Vince, there is a pretense of tracked achievement, I'm not sure exactly what it tracks for Edda).  But for various reasons, we shelved that idea, at least for now.  Her current teacher has many, many years of experience with special needs kids, both in inclusion settings and in completely segregated settings - the para-educators are concerned and helpful. At the IEP meetings they take all our suggestions to heart and work with Edda diligently, but somehow, of course, it could all be better. But what would that be? Mainly it would be if Edda didn't have Rett Syndrome.

Here's a link to the latest clinical drug trial that is being funded by IRSF - just came out a few weeks ago - GO NNZ-2566 ! (they really need to come up with a catchier than than that, something like Sha-zam or Rett-be-gone - now that is much easier to remember.)

Air and Space wright brothers

Sunday, May 20, 2012

Edda's in the house -

We took Edda to Jeremy's barber to fix up her hair. He was very sweet and Edda complied nicely by being very much asleep during a lot of the haircut. We were going to take both Jeremy and Edda to Cartoon Cuts to get the Mom and me combo (which really would have been the Dad and me haircut combo), but we were not in that part of town - so off to the barber we went.


So if you have a minute and would like to see Edda and her short hair cut and her stair lift all at once, here's our action packed stairlift movie. She is not super happy in this video, I think it was her third trip on the stairlift, you know, because I need to have more than one take and she's like come on people, I got stuff to do, movies to watch, I don't have time for your damn moviemaking.  Enjoy!

Thursday, May 17, 2012

Date night.


We try and have date night on Wed. nights, it is always a challenge to figure out something which is both cheap and fun. This week we picked something that was neither cheap nor especially fun, we went to IKEA to buy a new couch. Our more than a decade old sofas are now so stained and ratty that it is just plain embarrassing to have people come over and the first thing they do is to sit on the food crusted/grease spotted/torn fabric couches. So after months of hemming and hawing, we finally picked last night to go and pick out the couches. Wed. night is the most perfect night to go to IKEA, the place is practically empty! So gloriously spacious. So wonderfully romantic among all the MALM shelving.

Our sitter, Se Hyun, is so funny - she always asks if we our dates are romantic. Someday we might have a romantic date with candles and rose petals, but I'm not sure if it is possible after being together for a bazillion years to have a romantic date anymore. Isn't the romance of it all kind of like finding out new and exciting things that you don't know about the other person? I don't think there is much mystery left in our relationship. Also romantic means not going to a place that has ketchup on the table.


It's so hard to become a vegetarian when roast chicken tastes so good. I know I have no willpower.


Wednesday, May 16, 2012

Edda's hair

So I might have been a little grumpy last night and in the midst of my grumpy-ness, I cut off all of Edda's hair.


I cut it all off, I mailed it to Locks of Love, and I also tried cutting Edda's hair into a kind of modern wedge-type high in the back and angled towards the chin cut. I think I did OK, but Jeremy says we should get a professional to fix it this weekend.

Tuesday, May 15, 2012



This past weekend was beautiful! Jeremy organized a BBQ picnic for his office which meant that he cooked all weekend.




Thursday, May 10, 2012

Stained glass store.


I took the final for my biology class on Wednesday and all of a sudden, I find myself with more time. I used to have 5 hours of class and lab each week and I used to swim twice a week for an hour during the day - both of these I've stopped within the last two or three weeks and now I have time to catch my breath. I've been working more at work to catch up on some overdue patent stuff, but I've also had the chance to try and declutter the house and get some things done that I just haven't had time to do.

I've been trying to fix a floor lamp that used to be in Jeremy's parents house when Jeremy was a child. It had been sitting in the middle of our bedroom for six months just gathering dust. It is wrought iron with glass panels that surround the light bulb. Of course all the glass panels were long gone - so yesterday I found out there was a stained glass supply shop near the house so I went there during lunch time and picked through a million different beautiful pieces of glass to replace the missing ones from Jeremy's lamp.   I love going to art supply shops and seeing all the beautiful things to see.  The photo above shows different colors of glass plates stacked like records in a shelf.   It is so inspiring, makes me want to add beauty and color into my life.

Wednesday, May 9, 2012

I'm getting a desktop.


Vince and his friends are obsessed about this game called Minecraft. I'm not sure what is at all exciting about this game, it certainly is no Angry Birds.  It seems really boring, it has been explained to me as video game Legos.  Anyways, Vince invites all his friends over to the house and they take all the existing laptops in the house and then I don't have one. (At the high water mark, we had three laptops - two of the laptops are now dead, so really we only have one laptop now). I like to keep a personal laptop next to me while I'm at work so when I'm checking personal stuff, I don't do it on the work computer.

But everyday after school, my laptop gets taken by a little boy to build things in Minecraft-land and then what am I to do when I need to check up on celebrity gossip? It's just a terrible situation. So Jeremy found an old desktop and we just bought a cheap monitor which is coming tomorrow and I'm so excited that it's going to be heavy and big and slow so no one will take it from me!!! Muhahahaha!

Tuesday, May 8, 2012

Edda and her needs.


I just watched Maxi make a nest out of the pile of clean laundry on our bedroom floor. I guess the laundry is not so clean anymore, it all has a bit of eau de Maxi sprinkled all over it now. Oh well. Edda tried on this funny hat at Sunday night dinner last weekend and all I could think of was - crazy, silly EEG equipment.

Edda is doing well - cruising through the last bits of the school year. I'm not sure if I updated on the blog, but turns out the seizure meds were depressing her platelet levels and now that she is off of them - not only have her platelets rebounded, but also, we remain seizure free! (Keeping fingers crossed, knock on wood, etc, etc). Everyone has noticed the return of the old, more awake, non-medicated Edda and so we keep hoping that the seizures stay far far away. Jeremy was so taken by Edda's return of energy that he said that if the seizures come back (I think it really is only a matter of time), that he would almost prefer the VNS surgery because it has no systemic side effects. Anyways, we just wait and hope and enjoy this seizure free time with her.

Our custom stair lift is coming on Friday. At 70 pounds, I am scared to take Edda downstairs and it really is impossible to ask it of our caregivers, so we bit the bullet and it's coming on Friday.

Sunday, May 6, 2012

Ruby is so pissed.


Ruby is so mad at me these days. About 3 weeks ago, I had a growth removed from her elbow. The tumore had been there a long time, but suddenly it grew and became strangely hairless and bled a little. So I thought it would be a reasonable thing to remove it. So it was quickly removed and determined to be a benign skin tumor which was a relief - however, after the stitches came out it took Ruby only 5 minutes of "alone time" to reopen the elbow wound. So here I am at 5 pm, with a doggie that has an open wound the size of a quarter. Ugh. So I hightail it to CVS to get a supply of wound care items and come back and do my best to tape Ruby's elbow back together.

The next day, Ruby gets a second surgery just to close the open wound (which ended up costing as much as the first surgery). This time, I resolve not to let her romp around or even walk very much so she has been housebound for the duration of the 2nd set of stitches. I make her wear the cone of shame and also a T-shirt which covers her elbow.  She looked at me both with sadness and resentfulness. Then the vet took out the stiches the 2nd time and decided that one end still looked questionable and put in 4 staples for yet another week!

Poor Ruby is dying to see the outside again. Today I let her out in the front yard to pee and refused to come back inside. Exasperated with our disobeident dog,  I told Jeremy that she was his responsbility to bring inside. Jeremy ended up carrying our 60 pound dog across the yard into the house. Ornery dog. Sheez.

Saturday, May 5, 2012

Going to Home Depot.


We are having a nice relaxing weekend. No big plans - just hanging around the house and figuring out new apps to load onto our smartphones. Jeremy decided today was the day to tackle some electrical work - we have needed some new outlets for years now - somehow we can live with extension cords draped over all parts of the house without noticing too much or caring too much. We did get a quote from our favorite electrician who said that he basically charges $100 an outlet, so not only did we know how much we were saving per outlet, but we also had a person that we could call to save our butts (and know how much he would charge us) in case we shorted out half the house.

This project involved only two trips to Home Depot which I considered not too shabby. We needed an outlet across from the toilet seat in the downstairs half bath to keep Edda's TV charged and going. The extension cord had gone across behind the toilet and across the back of the sink to the outlet used to power hairdryers and shavers which is a long way to go in a small bathroom.  Edda is pretty much timed toilet trained now, if we are concentious enought to put her on the potty every two hours for 10 minutes or so, we rarely have to change a poopy diaper which is AWESOME. (Although I did have to change one today as we were in the bathroom all afternoon and forgot to put her on the potty. Whoops.).


Fix it projects used to be the source of all our marital arguments, but now that we are well into our 4th year of home ownership, we have managed to figure out how to work relatively peacefully with each other.  It still is a challenge and sometimes overwhelming as we have vastly different approaches to solving problems - but we both listen to each other now and also we know when it is time to call in a professional.


Thursday, May 3, 2012

Wearing a suit on the beach.


Jeremy is back from Orlando. He was the only guy on the beach wearing a dark blue suit. I got a text from him which said that he was the worst one in the family to enjoy the beautiful weather and the sand. Of course the kids love the beach and even though I don't really love the beach, I don't burn so at least I can spend the time not worrying too much about hurting the next day.

Wednesday, May 2, 2012

Who wants a treat?


I am trying to teach Maxi to fetch. She is better than Ruby who could never fetch to save her life, but still tends to lose focus after a few tosses and trots off to sniff other interesting things.

I am still sick. :(

Tuesday, May 1, 2012

I want to have an ice cream cone.


I am still sick. And I think I should treat myself with a 9pm ice cream cone. But I am trying to resist. Today I took Edda to the dentist. I want to say that when I get stressed and tired, the first thing to go is dental hygiene. It really is a sign for me that things are not going well. I stop flossing my teeth and I stop flossing Edda teeth; somehow I think no one will notice. But plaque buildup and inflamed gums are hard to hide, so I got sternly admonished today at the dentist's office.