Monday, June 30, 2008

Port Discovery.

Last weekend, we took Vince and his best friend from kindergarten to Port Discovery in Baltimore. There is a McDonald's located right next door to the Children's museum. We went 3 times to the McDonald's over the course of the day - junk food all day long. Ugh. Makes one's tummy spin. (At least I managed not to get ice cream in my hair.)

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They have a 3-story rope/climbing jungle gym which is the most elaborate indoor jungle gym that I have ever seen. The two boys were freaked out and totally scared to go across the rope bridge that was suspended 3 stories off the ground, but Edda - she and I crossed the rope bridge and shimmied down a rope tunnel so high up in the air that even I couldn't look down and laughed the whole way.

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Wednesday, June 25, 2008

May the horse be with you.

A regular sighting on my midday stroll.

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Tuesday, June 24, 2008

Me and Edda paint the town red.

I took off work today to spend some quality time with Edda. We went to see the dentist, our new neurologist, the physical therapist and to top it all off, I got to get my first (baseline, routine) mammogram. Nothing of note happened, dentist went fine - no problems, the neurologist wants a 24 hour EEG! Surprise, surprise. And my boobs are AOK!

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Monday, June 23, 2008

On the heels of...

...hippotherapy, I found this video in the Washington Post about a horse ranch in Montgomery County. I don't think it's the same place Edda went to, and it's more about the horses, but hey, some moody B&W photos.

... and nerdy and sweet

Vague.

So I thought I had an appointment with Sen. Milkulski's health legislative aide this Wednesday at 11, but after a series of unanswered emails, I no longer believe I have this appointment.

I had written IRSF in advance of this supposed appointment to make sure that all the information that I had gotten at the conference still applied. One of the major supporters for the $500,000 earmark is Ted Kennedy, who is undergoing treatment for cancer right now so I didn't know if it was OK to still say that he was supporting the cause, since I guess he wasn't actually going to be there on the Senate floor when someone yells out, "so does Rett Syndrome need half a mil?" because he's busy fighting his own battle. Turns out that the major turning point of this earmark happens tomorrow afternoon at some sort of "marking up" session, so we'll know by tomorrow if we've got it or not, so this appointment Wed. morning now seems pointless anyways. Sigh. I know I know nothing about how the political system works, but I'll figure it out someday.

Sunday, June 22, 2008

Summer Sunday.

Is it possible to learn to love a season? I have always disliked summers, I loved being in school with my friends and working on projects and classwork and I always found summer to be too hot and too long and too boring. My summers were often filled with odd jobs with no sense of purpose except to wait for the fall when my hectic schedule would start all over again. Perhaps I did not know how to relax.

Somehow this summer seems special, I think mainly because this is the first summer off my kids have had. In previous years, we've been on the Singapore school system - where it's summer all the time and their big "summer break" is 6 weeks during Nov-Dec or else it was daycare which ran all the time.

It hasn't been so hot here (although even writing that sentence I know has doomed me to weeks and weeks of unbearably hot days) and I see the carefree joy in my kids with late sleeping schedules, no homework, Popsicles day and night and having just a more relaxed schedule.

We just had a cookout with hamburgers and watermelon. Yes, summer isn't too bad.

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Swimming.

Went swimming yesterday at the pool. Edda does not love, love, love the water like a lot of other girls with Rett Syndrome do. I think she remembers how warm everything was in Singapore and everything in comparison is cold, cold, cold.

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We put on this little wet suit to try and keep her warm, I think she did enjoy it a bit more once the suit was on. Jeremy is not a huge fan of the pool, as you can see, he's trying pretty hard to protect himself from the sun.

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Vince is slowly learning to swim. He has learned to propel himself forward in the water, but is still lacking the critical skill of taking a breath without needing to stand up.

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Edda loved the snack bar, look at the blue tongue of summer.

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Friday, June 20, 2008

Stick shift driver..

Jeremy's flight came in at 6:30 pm tonight and I worked, worked, worked right up to the last minute trying to finish all that I wanted to do. This is the end of the quarter for me, I wanted to do a good job and so I worked ferociously today and I got done what I needed to get done.

I had driven to work so I could leave work and head straight to Dulles, because Dulles is not really accessable by public transit. On a side note, it only took me an hour to get to work even though I left the house at 7:30 am which is the peak of morning rush hour, vs the 1.5 hours it takes me via public transit. Sigh, there is no getting around that the subway is just slow.

I am officially a stick shift driver now, I've taken the car on the Beltway in rush hour traffic! I can downshift and I can handle stop and go traffic. It has only taken me 12 years to learn to drive a stick shift, Jeremy's always had one since we've been together (he's had 3 different cars in 12 years), and I'm sure I tried to learn to drive each and every one of them. Now I just have to learn how to take the curves without putting on the brakes.

Wednesday, June 18, 2008

Summer plans.

Rebecca asked in the previous post if Edda's getting any services for the summer. Edda is qualified for ESY - extended school year, but it's not extended by much. It's from July 8th to August 1st from 9 am - noon. Other than that, Edda's going to PT and OT once a week. We are still struggling to find an SLT that we like, but we can barely find anyone who is even willing to take Edda on, let alone find someone superfantastic.

On a fundraising note, I think I have an appointment with Sen. Mikulski's (MD) office next Wednesday at 11 to talk about the $500,000 Rett Syndrome earmark. I don't have an actual appointment with the senator (which I think would have freaked me out to no end), but I think I have one with the legislative health aide, which is better than I expected. I sprinkle the word "think" throughout my last sentence because the legislative aide emailed me and said "Wed. at 11?" and I replied "Great, how do I find your office?" and I've gotten no answer and that was 3 days ago. I wonder if I'm going to bring Edda. It's smack dab in the middle of the work day, but what the heck, she's up for an adventure I guess. What am I getting myself into? Apparently, I'm heading to Capitol Hill.

Tuesday, June 17, 2008

2nd tooth.

Jeremy is out of town again at a work retreat. Yvonne and I were laughing this morning about what a good gig Jeremy has, go to some beautiful place and have some beers and talk about saving the world. He just called from CA, he's still sick and it's 4 people to a room and he forgot to pack his pajamas.

Edda lost her 2nd tooth today. Yvonne thinks she lost it somewhere in the living room. We are never going to find it, I bet a dog ate it.

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Vince helping out with a little feeding.

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And also some carrot cutting.

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Monday, June 16, 2008

First day of camp.

Vince's first day of summer camp was canceled because a water main broke in the neighborhood. We are under strict orders to boil our water, which (because we don't have cable TV) no one really took seriously until I was on my way home from work and mentioned it to Jeremy.

Jeremy has been sick the past two days with a fever of 104. He has alternated between being too cold and being a "sweatball". He went to the doctor today who laughed and told him he wasn't taking enough Motrin.

After I spent the day telling my coworkers how wonderful the Metro is and how I haven't had more than 5 days in the past 9 months with major delays, I spent the evening wedged into both platform and the train because the train I was on was too crowded and one overeager transit rider has his rear end leaning against a door and then the doors failed to close and we had to de-train and then I had to wait until 4 full trains passed until I could get myself back on track towards home.

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Sunday, June 8, 2008

Hippotherapy.

Doesn't hippotherapy sound just like a asking a hippo, "Yes, but how how do you really feel?"

After 8 months on a waiting list, we finally had our first session/evaluation today even though it was really, really hot.

Gong gong and pua pua were there:

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Here we are on Monty, the fake horse:

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And here is Shamrock, our therapy horse which we did not get to ride on, but at least we got to pet.

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Saturday, June 7, 2008

Pool party and IEP follow up.

We were 30 minutes late for Edda's IEP meeting on Friday because a train broke down on the Metro and we had to single track it for a while, which means that you have to let one train run the whole length one direction and then the other train gets to go in the opposite direction - quite a waiting ordeal.

I think that this IEP meeting is kind of funny. We love Edda's teacher, Ms. Sarah, and she knows Edda as well as we do and I feel like I can call Ms. Sarah up and say, hey! can we try this out? and she'll think about it for a while and then we'll work on it. So at the IEP meeting is - Ms. Sarah, Ms. Tanya (the principal of the school, who we also have a nice relationship with) and then 2 people from the county who talk about Edda but don't really know her. And these other folks who don't see Edda on a daily basis, they like to talk a lot. (Hands? What's the deal with her hands?) Yes, so it was non-confrontational and just fine. We changed a few things about her IEP to tie less of her early literacy skills and early math skills to actually physically having to do something with her hands to more eye gaze and tapping.

I spent the afternoon at the local community pool for one of Vincent's friend's birthday party. (I got to hold a 6 month old baby! Sigh, such babyness.) This is the first hot/humid day of the season, it was packed and Vince had a great time. This photo does not begin to tell you how crowded it was, I felt like I had one square foot of pool to myself.

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Wednesday, June 4, 2008

Bussing around.

Now there are 3 drivers in the house, Yvonne, Jeremy and me. We have only 2 cars, so Jeremy started taking the bus to work today. The plan is for me to drive to the Metro in the morning, then Jeremy takes the bus to the Metro and heads to work and then we coordinate and go home together. Yvonne then has the car during the day to drive the kids to their various appointments and activities and also so she can do some stuff during the day while the kids are at school.

Trying to help Yvonne find her way around has been a bit crazy and unpredictable, it makes me want to buy a GPS!

Our Offices Move Again

Our offices move again. On Monday, Mom & Dad are going to move into an office room where sits two people with one door and no window :)

Tuesday, June 3, 2008

Summer.

Yes, it's going to be summer soon, the kids are out of school next week. My favorite seasons are usually the transitional seasons, spring and fall. This has been a nice long spring, lots of rain, lots of flowers. I think this week marks our 1 year anniversary since we've moved to Maryland. A year ago, neither of us had jobs, none of the kids were in school and we were kind of adrift, not knowing how it would all turn out. It has been a lucky year for us!

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Monday, June 2, 2008

Science writing.

There is an article in the NY Times about how science should be more of a part of everyday life. Sometime soon, I'd like to do some writing about science, most likely it will be on this blog about the advances in Rett Syndrome research. There are so many interesting things happening in the world of gene therapy in general and Rett Syndrome research in particular and I think I may be able to understand a lot of it, but I don't have the time to really sit down and go through pages and pages of dense scientific stuff. It's been a long time since I've sat down with a biology book (they are always the heaviest ones, dense with vocabulary and pictures and drawings).

Sunday, June 1, 2008

A few notes.

Did I mention that Edda lost a tooth the first night I was in Chicago? Of course, you get no warning that the tooth is going to fall out, we just got a call from Edda's school that everything was fine, but the tooth was coming out. She's a little young, just 4 years and 2 months, but I have consulted with 2 dentists (ha ha, last night, my great friend from high school, Sue, brought her cutie baby all the way from LA and had a dinner party at her sister's house and there were 3 dentists in attendance) and they both said that it was OK, girls tend to lose their teeth earlier than boys. Vince hasn't lost any teeth :).

(Look closely at her lower front teeth!)

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Edda's IEP meeting is this Friday and I spent some time today reading over the proposed draft. To recap, Edda's in a special needs preschool with other kids who are non-verbal and believe that Edda's going to be in the same school again next year, which I am happy about.

I have watched the class a few times in the past month and there are kids who are definitely getting the hang of talking and will say a few words, there is a kid in there who is really good at using the picture cards (the teacher laughed when I asked about his PECS skill, she explained that he's really good at it, but points to the cookie picture all the time over all other choices. hee hee), Edda is the most physically disabled of the group, she may be the only one who actually needs to be fed and watched super closely when they are out in the playground.

I like the school, I think we are getting the best services that are available in the county for Edda right now, and all the folks who work with her are skilled, excellent professionals, but going through the proposed goals for next year is distressing to me. Day to day, I think of Edda as "just Edda", no labels - she's doing her own thing, learning at her own speed. It's all good. IEP reading says it all in black and white, "significantly below age expectancy", "Edda's significant cognitive, social/emotional, speech and language, fine and gross motor, and self care delays impact her ability to participate with typically developing peers in preschool activities thoughout the day." Yikes - sounds baaad. It's hard for a parent to read, no question about it.

In the IEP proposal, there is nothing really what I consider to be leading to be learning how to read or how to do math. However, I don't want to barge into the IEP meeting and tell them that Edda can learn to read, really she can! when I have no evidence of it myself except for a bunch of other Rett parents insisting that it can happen. So yes, I believe that she can do it, but we really have no eye gaze or choice making in place. The school has been working on the eye gaze and the choice making, but it's inconsistent and I really think Edda is just not motivated enough to answer.

I feel over the past year, Edda has been getting better about "telling" us about her needs and wants - mainly about video choices and when she's hungry, but it's not formalized like using pictures and getting a clear answer via tapping using her hand or eye gaze. It's something we really need to focus and work on. I feel like I need to work on it at home and once I get a consistent yes/no or choices, then I can press my case a little better with the school.

Kouign-amann, pancake practice, bacon.

Ohhhh, I love these Kouign-amann.  It's like a croissant covered in a crunchy sugar coating. I'm eating poorly these days, snackin...