Year: 2008

A few weeks ago, I decided that the bunk bed in the kids’ room was a bad idea because the top bunk was really close to a ceiling fan. We decided that the bunk beds needed to be debunked.

I did not realize that it was going to turn into a king sized crib surrounded by a moat of loose Legos.

Edda is still regularly getting up once or twice at night, and getting to her is incredibly difficult. Because you are not only stepping on a million Legos, but also, you have to hurdle over the side rails in the dark.

Who’s idea was this anyways? Ah yes, I guess it would have been mine, but I thought that we would have 2 separate beds and not 2 beds shoved together where the parents take turns sleeping on the crack that runs down the center of the two.

Edda’s sleeping is driving us to distraction, we are trying Clonidine to get her to sleep better. I have to say the first night I gave it to her, a fantasy of us – the parents, being able to sleep through the night had me salivating and so giddy, but of course, she didn’t sleep through the night. The 2nd night, (last night), she also didn’t sleep through the night, but at least she slept until 5:45 am, which is much, much better than the usual 4:30 am. Jeremy was ready to give up, but I’m hoping the 3rd night is the charm.

Work is relentless these days. Every two weeks, I’m responsible for a certain number of “counts” – usually every 2 weeks, I have to do 8 counts. Generally, I get a count for starting a case (which is hard) and a count for finishing a case (which is pretty easy). The time frame between starting a case and finishing a case is about 12-18 months and there can be a lot of back and forth in between beginning and finish a case, which I get no credit for.

Anyways, I’m in this tough situation where I have to get all my counts from starting cases (hard) and I have no easy counts from finishing cases because I’ve only been examining cases for about 10 months now. And there is a lot of correspondence between me and the lawyers about cases that I’ve started, but haven’t finished. The folders in the photo indicate a recent 2 week period where I worked on 19 separate patent applications.

I’m a little frazzled.

Mom is in the basement roaming around as a stock market bargain hunter. It is fun just watching her glued to the stock market ticker 🙂

On Saturday, Edda and I went to ballet class. Although I usually post photos of Edda happy and smiling on the blog, Edda is often quite unpredictable and hard to deal with when her mood turns. When her mood turns, there is often nothing that soothes her, especially when we are out and about. It is this unpredictability that often has me on edge whenever we leave the house. I often find it draining to take the kids out and about by myself because often Edda will just turn on a dime and be inconsolable and I feel defeated, disheartened and drained. Jeremy, on the other hand, I think because of his more optimistic personality, tends to get a command performance resulting in cheerful outing from our Edda-mame.

Somehow, this weekend (perhaps because so much is going on right now) when Edda lost it at ballet, it in turn made me lose it and we ended up both in tears – sitting on the squishy couch outside in the lobby area of the ballet studio.

Slowly, one at a time, three parents from Edda’s class walked over to our squishy couch spot and gave me hugs and some tender words which were wonderfully touching, but I couldn’t stop crying and neither could Edda. We left early with a sweet hug from the coordinator of the class with a “We’ll see you guys next week!”. I think I’m going to make Jeremy go to the next class.

What we did this weekend.
1. Ballet class and grocery shopping – Vince and Doris
2. Homestead Farms (apple picking) – Edda, Jeremy, and Yvonne
3. Post office and Target – Vince and Doris
4. Ballet class – Doris and Edda (which involved crying from both parties involved – long story, perhaps worthy of its own post)
5. Curried chicken salad – assembled by Jeremy
6. Church potluck – Vince, Edda, Doris and Jeremy
7. Swim lesson – Vince and Doris
8. Hippotherapy – Edda and Jeremy (and Shamrock the horse)
9. Church – Vince (attended class) and Doris (helper in the 4th-5th grade class)
10. Canvassing in Loudon County, VA for the Obama campaign – Jeremy
11. Sunday night Dinner – Jeremy, Doris, Vince, Edda, Ruby and the DC Martins.
12. Grocery shopping again – Doris

Finally, we ordered Kiki and Kappa’s housewarming gift for us – a special needs trailer for our bicycles (one of which is stolen so we can’t use the trailer with that one)/stroller . It’s called a Wike and we are very happy with it, it seems well built and the customer service seems very sweet. After we ordered it on the internet, they actually called us and talked about Edda to see if it would be good fit for her. We’ve been looking for something to replace our jogging stroller, which we used a lot to go into the woods, Edda is way too big for that now… We used it for the first time today to go apple picking (as a stroller) and to church for Saturday night potluck.

Look – it can also be a Doris stroller!

Karen, it works and thanks.

Rena is good at knots. I guess from her Dad who was a sailor. She was also very interested in operating on her only patient (me). She was tightened up the knot on one of the skin tags every night for the past several nights. It shrank a lot. Last night, she cut it with scissors. Before cutting, she, with a big weird smile on her face, assured me that it won’t hurt. Right, I was her only patient. And of course, it was on my skin not hers.

She claimed that she had saved me $400/3=$133.33 also and, a few seconds later, started tackling the rest …

Since my bike was stolen, I’ve been taking the bus back and forth to the metro. Sometimes on my way home from the bus stop, the timing works out that Jeremy meets me and gets off his bike so we can have a few minutes of chatting before we head home for dinner.

Our per diem income of not-taxable status is coming to the end in early November. Therefore, we may be sent to Denver, CO to help out on other projects for a month+ or two. This way, we can get to our per diem not-taxable status back for another year in Princeton.

It may or may not happen. But it doesn’t matter, we like Denver a lot as well as here in Princeton. But just too bad, when it happens, it will happen during the Winter time. I am pretty sure that we can’t carry our old bones downhill on the slope. Or, otherwise, it would be perfect. But, Donald & Doris can. Welcome!

I am going to dig up my previous credit card payments in order to locate that steak house we enjoyed a lot while in CO ~ three years ago. It is in a small, tiny-tiny town. But its steak is the best. Better than those steaks in the upscale restaurants we have visited. But, I need to check the weather first. Snowy roads, up-and-down, in CO is very slippery for my two-wheel-drive car, especially for the rear ones.

Btw, Mom has a perfect heart according to a much more sophisticated test last Wednesday. I are pretty happy about that.

There are a number of charities related to Rett Syndrome, they are populating my sidebar. It’s a little confusing the relationships between all of them. When you make your donation to help out little (and big) girls like Edda, it would be nice to know which organization you are giving to and how their philosophy may differ. There are many, many hardworking people at all these organizations and I can not begin to tell you how much time and energy goes into everything that they do. Without these organizations, I would be lost.

A little history:

About 30 years ago, a woman named Kathy Hunter, started an organization called the International Rett Syndrome Association (IRSA). Her daughter, Stacie, was the 6th person diagnosed with Rett Syndrome in the United States and starting from her kitchen table, she knit together an organization that was very family oriented. Parents of daughters who are now in their 20s speak fondly of that time – remember, no internet, no instant messaging, no cell phones. It was really to Kathy Hunter’s credit that she got all these far flung people together to form a community. IRSA started the yearly family conference, which I have attended twice now. I’ve found them to be uplifting and inspirational.

Then about ten years ago, a group of parents were disappointed with the lack of research that was being done to understand and cure Rett Syndrome, and a second organization formed, the Rett Syndrome Research Foundation (RSRF). This organization, co-founded by Monica Coenraads a year after her daughter, Chelsea was diagnosed. This organization raised over $11 million dollars over the past 10 years and led to the amazing mouse model reversal of Rett Syndrome. Their focus was to to fund research and do targeted experiments to find a cure for Rett Syndrome. It was under the auspices of RSRF that last year, I participated in the Fairfax, VA stroll-a-thon which raised $100,000 for research.

This past year, IRSA and RSRF merged to form the new International Rett Syndrome Foundation (IRSF) and this umbrella organization is taking the family care aspect and the research aspect into one centralized organization. Lots of people from both IRSA and RSRF remained on the board of directors of the combined organization. It is under this organization that I have visited the offices of Van Hollen and Kennedy to ask for money to fund research for Rett Sydrome.

However, during the merger, both Kathy Hunter and Monica Coneraads left the new organization. These two women are both energetic and passionate women, I knew that they would not be quiet for long.

Kathy Hunter has started RettHelp.org, a family support forum where you can “find the facts you need, and the care and comfort you so richly deserve in meeting the challenges of Rett syndrome”.

Monica Coneraads has started the Rett Syndrome Research Trust (RSRT) this past year, and their website just went live! This organization’s focus is to deliver clinical trials of a novel treatment strategy in 5 years. Two women, Ingrid Harding and Kelly Butler (who are my own personal daily source of inspiration) are working hard at Girl Power 2 Cure, which raises funds on behalf of RSRT.

Whew! Are you still with me? It is my biggest fantasy that Rett Syndrome be cured. Not a day goes by without me thinking about Edda being able to control her body and be able to speak! What a day that would be.