Wednesday, December 31, 2008

Happy new year's eve.

I mentioned to Jeremy last night that I'm obsessed with Beyonce's Single Ladies video which shows three ladies dancing in 4 inch heels and skin tight, quite revealing leotards and therefore I'm a little bit embarrassed to post it to this website. It has sent Jeremy scrambling all day looking for the "best dance" video. So from what I hear, the kids and Jeremy have spent all day dancing.

Tuesday, December 30, 2008

Jeremy's sick.

Last night at midnight, Jeremy puked up his dinner, which means that about 3 hours from now, I will be sick to my stomach. As a precaution, I ate very little today (well, very little except for the chicken sandwich, 2 chocolate chip cookies and 2 minty chocolates and a pork dinner). Donald went home today (he's on the plane now, but hasn't taken off if everything is on time for a 8:40 pm takeoff), I hope we didn't send the stomach bug with him to CA so he'll feel like puking on the plane to SanFran.

This week, Jeremy has off of work. He's been playing with the kids and doing lots and lots of errands, getting the cars serviced, getting the gutters cleaned, repairing various broken appliances (!).

Monday, December 29, 2008

Illnesses and transformers.

Vince got over his stomach bug, now it's Edda's turn. She threw up at least 5 times last night! Since she can't really spit, she had a tough time clearing her mouth, but eventually she settled down for the night. She didn't eat anything today except for 2.5 cans of Sprite (which apparently she loves). We went to my parents' house for dinner and she spent the evening asleep.

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While at my parents house, Vince overheard us adults talking about Donald's Transformer collection from the 1980s. Vince asked Donald very sweetly if he could see the collection and Donald took the young boy by the hand and led him into the basement where he found:

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One More Farm Picture

Here is one more farm picture. We were on our neighbor's front entrance deck with farm in the background.

Sunday, December 28, 2008

Visiting the farm.

We visited the "farm" today. Vince was a little confused about the "farm" - he felt that the word "farm" meant that there would be cows, chickens or pigs (preferably friendly ones you could pet) and apple, blueberry and peach picking. However, our lovely "farm" has only trees, deer, squirrel and raccoon. But we had fun anyways - Vince especially liked that he could pee outside.

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Saturday, December 27, 2008

Home improvements.

Vince has spent most of today asleep - outings and dinner parties have been postponed. Jeremy and Donald have spent some time doing some small home improvement projects.

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Thursday, December 25, 2008

Christmas night.

I'm so happy Donald is here for Christmas, I wish he were here all the time - he adds a little je ne sais quoi to our life. (I got him a Tazmanian Devil steering wheel cover.)

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Wednesday, December 24, 2008

Sunday, December 21, 2008

And the baby's name is...

Ruben Isak Westeson!

born Friday, December 19th, 6.5 pounds, son of Johanna and Ben (Jeremy's brother), brother of Felix, cousin of Vincent and Edda, nephew of Jeremy and nephew-in-law of Doris.  

Bah humbug.

Yes, it's true. I'm a grinch. Christmas makes me grumpy. Nevertheless, we hosted the DC Martin's annual kid's gift exchange - because some of the cousins are leaving town, there is always an early gift opening between the local families. At the end of the afternoon, we realized that tonight is the first night of the Hanukkah, so I dug the menorah out from the basement and lit the first candle.

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Friday, December 19, 2008

Waiting.

Ben (Jeremy's brother) and Johanna had the baby today! No word yet on the gender or the name...

Tuesday, December 16, 2008

Potty training.

I have been crowned the household potty training queen. Both of Edda's other main caregivers, Jeremy and Yvonne, are not as excited as I am about getting Edda potty trained. I think girls with Rett Syndrome who are potty trained are mostly timed-trained, which means they've trained their families to take them to the bathroom every 2 hours or so. We are quite badly trained, I'm pretty sure Edda could be timed trained if we could get our act together.

I've downgraded my definition of potty training (for now that is), I'm just hoping that I never have to change another poopy diaper ever again, I totally don't mind the pee diapers, it's just the poopy ones that are a PITA - literally and figuratively. They are so huge and messy and just plain difficult to deal with, I just hate it, hate it, hate it.

A few weeks ago, I had a string of 4 or 5 days, where I had good luck and every day I coordinated well with Edda where she went #2 in the potty right before bed. I don't ask school or Yvonne to document the #2s, so sometimes it's hard for me to tell when she went last. Edda does not give any indication that she has to go, I just put her on the toilet when I remember to and then I wait for 3-5 minutes, because that is how long it takes her to get going. (This is the reason I'm the potty queen, Jeremy doesn't like waiting the 3-5 minutes. I'm like 3-5 minutes of just hanging playing patty cake with Edda to not change a poopy diaper? That's a fair trade!)

Our latest triumph is what I call the "traveling poop" - where we are actually out and about and Edda gets a poop into a potty. It's quite a scene - I use the whole handicapped stall - you've got the wheelchair, Edda and me and all of our crap, which means 2 winter coats, a huge purse and backpack, one diaper that has been used, one diaper that is clean and then we are wiggling around trying to not to touch anything. I've had this happen 3 times in the past year, once on a trans-continental flight (which was so impressive to me that I celebrated with an extra bag of Doritos), once at church and one this past Sunday at Union Station. I love the thrill of victory!

I don't want to give the impression that we are getting 100% of the poops. We still sometimes find ourselves out in public places with a full diaper and a yucky public toilet stall and at home, even when I'm paying close attention, I'll miss the signs and I'll need to change her, but I feel like we are making progress a little bit at a time.

Go Edda!


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Monday, December 15, 2008

Friends.

Vince has been having trouble finding a group of close pals at school. It's pretty painful to hear since it so starkly contrasts with kindergarden at his old school, where he had a close group of diverse friends.

We actually had the pleasure to meet up with K., Vince's friend who moved to upstate NY at the same time that we moved to a new neighborhood. They drove 4 hours each way during Thanksgiving weekend to see us at Jeremy's parents' house. It was really sweet to see them together again.

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Sunday, December 14, 2008

Hippotherapy.

Brrr... cold this morning to be on a horse. Edda likes to fall asleep on top of Shamrock.

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We also were at Union Station dropping Emy off after her 18 hour visit. We ate in the food court and then stopped by this Xmas tree (a gift from Norway).

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Saturday, December 13, 2008

The crap collection area.

We are trying to tame our clutter buy purchasing various "organizational systems" from IKEA. Each time we come up with a new organizational plan, I feel so hopeful and excited that once the shelf is installed, my life will be orderly.

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Emy, Jeremy's sister, was suppose to come to town last night because the organization she works for is somehow associated with a performance at the Kennedy Center that is happening this weekend, but an ice storm hit NY yesterday, all the trains were canceled and besides that, her car was stuck in the garage behind an electric garage door opener. So she's trying to make it down today for tonight's performance.

Thursday, December 11, 2008

At home with the kids.

Our sitter, Yvonne, is in Miami for three days this week. On Wednesday, Jeremy did the morning and I came home just in time for the school pick up. Today, Jeremy stayed home and tomorrow I will stay home.

Since I work, I often do not get to meet a lot of the folks in my children's lives. For example, Wednesday was the first time I met Edda's afternoon bus driver and bus aide and of course, I've already forgotten their names.

Tomorrow I'm going to go to Vince's school - it just happens that they have an augmentative communication program at the school and I'm going to see what it's like and if it is appropriate for Edda. The requirement for entrance is to be able to do 50 PECS/pictures or symbols on an ACC device and Edda can not meet that goal right now, not even close. What can I say, it's a struggle - this communication thing. It often depresses me and I think I can do better. Sigh.

Some of the kids in the augmentative communication program mainstream into Vincent's social studies class and he often partners with a little boy in a wheelchair who uses an augmentative communication device we call the Big Box of Words. I have never met this little boy, but it gives me great pleasure to imagine Vince with this other little kid in social studies class together figuring out how the US government works.

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Wednesday, December 10, 2008

Tuesday, December 9, 2008

For my pal Ingrid!

What a time sink! It's so weird to watch Edda "dance"!


Send your own ElfYourself eCards

Monday, December 8, 2008

Home improvements.

Jeremy has installed Edda's swing in the upstairs guest bedroom. He has two eye bolts coming in from the ceiling joists and then 2 heavy metal chains hanging from the bolts. The metal chains are what you can see through the window from the street. I wonder if the neighbors are just a little bit curious what why we need metal chains hanging from the ceiling...

I have been in one of my cleaning (aka throwing stuff away) moods the past few days, where the piles of clutter everywhere are driving me up the wall. I've been trying to clean up a little bit - thoroughly confusing Vince and Jeremy who are both more used to a more relaxed (and messy) mother.

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Sunday, December 7, 2008

Holiday potluck.

I love potlucks. We had a potluck at church today, the theme was "getting ready for the holidays". It was full of crafts for the kids and the church band played. Even though I love potlucks and I'm the main church goer in the family, I don't do the cooking for the church potlucks. I usually convince Jeremy to make something for the event and then he shows up to the potluck to be nice.

I'm still getting used to the idea of going to church since I didn't grow up in a religious home and the statement, "I go to church" does not come easily to my lips - it is just something I thought I would never say. The other day someone asked me if I was religious and I said that I am not, but that I do go to a church. The world is a curious place.

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Saturday, December 6, 2008

Vacuuming.

We spent the day vacuuming dog hair off the couch and putting together our Christmas tree. Vincent is having a tough time waiting to open his gifts. He has not been a happy camper.

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This evening, we took Yvonne out to dinner for her birthday. She turned 19 today. Jeremy spoke with some of her pals, and while we were out to dinner, they all came over and decorated the house and really surprised Yvonne!

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Hippo butt at the zoo

Wednesday, December 3, 2008

A longer note.

We've been busy and I'm trying to make a concerted effort to stay off the computer while everyone is awake, which has led to shorter blog posts. However, I have a moment now - the kids are asleep and Jeremy's at some sort of dinner where you sit down and talk for hours - so I'm here alone in the kitchen.

I just got home from a meeting at Edda's school. It was a little social get-together for parents to get to know one another and also there was a speaker to talk about some of the services the county offers. Edda school is a special-needs school for kids mainly on the autism spectrum, although there are also kids in the program with various other disablilities.

The meeting reminds me that although the diagnosis of Rett Syndrome is terrifying and isolating, in some ways I would rather have a diagnosis where I know the exact genetic reason Edda is the way she is. It is something to hang a hat on, something to work on and something that focuses me. With a diagnosis of PDD, it's so vague and I see parents really struggle to find out what exactly is wrong with their child. Some parents are very proactive and aggressively seek out treatments from all sorts of doctors (homeopathic, acupuncturist, herbal medication, the most accurate brain scan (better than a CAT scan, is there such a thing?) - someone told me they did a complete genetic map - but I almost can't believe this because I didn't think it was available to the general public, but maybe I guess, they mapped Venter's genome, I guess they could do yours), others seem incredibly overwhelmed.

It often depends on my mood how I take these interactions with other parents of special needs kids. Sometimes, I think, OMG! I'm totally not doing enough for Edda and I call Jeremy and I ask him are we doing enough? We need to sign up for more stuff, we need to get on the ball and I feel all energized and optimistic. Other times I feel blue because of all the kids, I irrationally think Edda is the most disabled of the bunch and I get into this no one else understands me mood. These mood change with the day and the season. Tonight I was in a pretty good mood, these feelings did not overwhelm me - I'm happy sitting here typing away.

I wanted to also talk about Edda's IEP meeting - it's a meeting that is held twice a year with the school system to see if we are meeting our goals and what our goals in the future will be. They (not me personally, but from many, many stories) have a reputation from being contentious and antagonistic, usually because the parents want something and the school system doesn't see the need.

(I find it hilarious that amalah, a popular mom blogger who lives in the same school system we do and has a son who has speech delays which are mild enough that the school system wants him mainstreamed and now is fighting for extra services and on the other hand, I have Edda, who has a speech delay and we'd like to see a little more mainstreaming.)

Anyways, Edda IEP meeting was fine, I love Edda's school, they are wonderful, caring and are dedicated to the kids. I'm working far away, I can not micromanage Edda's educational experience, but I talk to Edda's teacher often and I like her. It's just that at IEP meeting there were three other people from the county who have spent very little with Edda who were doing most of the talking. It's a little bit upsetting to have people who have spent very little time with your child headlining the meeting.

I guess that Edda is up for some type of psychological evaluation and they were explaining how the testing was done and how they would use toys to note their cognitive abilities and I was like - dudes! she has Rett Syndrome, so she can't use her hands! So those toy tests aren't really going to work that well... The reply - you mean she can't use her hands at all? Hmmm.... well there you go.

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Tuesday, December 2, 2008

Tivoli

We spent a little time outdoors this Thanksgiving. We walked around Emy's town, got some rice krispie treats and brownies at the local bakery. It was cold and a little wet and Emy's town is very, very small and we had pretty much hit all the highlights within 15 minutes.

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Before we left for NY, I debated whether or not to bring my laptop so I could finish up some work. In the end, I decided not to because whenever we had visited before, the internet connection was flaky and always was worse when it rained - which is somehow more frustrating than just saying - hey! no internets here in these woods. (Also, I just really did not want to work.)

But, of course, the internets was fine and we spent a lot of time vying for the 1 computer in the house (5 adults, one computer (oh yes, you need to add vince too)). I'm so proud of myself, I introduced Emy to the magic of RSS feeds.

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Monday, December 1, 2008

Our southward bound saga.

We spent 11 hours travelling in the car yesterday. I did look at last year's blog entry and it said that it took from 9:30 am to 6 pm. This year, it took from 10 am to 9 pm. Luck was certainly not on our side. Jeremy has a favorite route going through Harrisburg, PA and not on 95, the whole time we were wondering if 95 was better, but I heard from coworkers today that 95 was a parking lot - so there you go. Next year, we leave on Monday.

On another note, Edda seemed to be getting better as we headed into the trip and then on Sunday (in the car) it was clear she was getting worse. Went to the doctor today and it's strep. I think she's going to miss a week of school for this.

One of the reasons it might have taken us 11 hours is because we met Santa and had to make an emergency potty stop at a Ruby Tuesdays.

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