Thursday, March 29, 2012

Edda is sick today.

Edda missed school today, a little under the weather. She got to stay at home and watch all her favorite videos over and over again and moan occasionally. I got to snuggle with her under the covers and take a nap with her. One of the drawbacks to being a grown up is that usually no one takes care of you when you are sick. You just moan and no one else is around to snuggle with you. Here's Edda on a healthier day:


Tuesday, March 27, 2012

Wide lens.

I miss having a wide lens. Unfortunately, Nikon does not make a prime lens that are cheap enough, wide enough and fast enough for me. Almost makes me want to switch to Canon.  On our trip last weekend - a pal let me borrow a 10mm lens to stick on my trusty Nikon D40 to play with it! So much fun :)





Monday, March 26, 2012



Edda's birthday, for me, can be a day of great sadness - so we were very lucky this year that we were out and about this Saturday, the 24th of March, the day Edda turned 8. I have the cub scouts to thank for this outing - we were in Chincoteague and Edda's birthday could not have been any better.

We saw Misty - well preserved:


We went for a walk outside with lots of people:


I did not tell anyone it was Edda's birthday (I don't want anyone to make a big fuss - I was just so happy that we were spending the day with friends and a jam packed agenda and Edda was happy with it all) - but somehow, someone found out that it was Edda's birthday and all the little sisters of all the cub scouts (there are at least 3 little girls that are Edda's age) insisted that we order a slice of cake and sing. Nothing could make me any happier! The slice of cake was so large, we split it six ways!

Happy birthday sweet Edda!  May all your wishes come true :).


Sunday, March 25, 2012

Tank pinata.


We thought that at the 4-hour-long 20-boy 10th birthday party, we would have a pinata, but it was clear 30 minutes into the party, there was no need to add anymore swinging sticks to the hoopla - so we saved the pinata for Sunday night dinner when the atmosphere was a little calmer and the ratio of adults:children was more than 1.

I did not actually know that this pinata did not even require the use of a swinging stick, apparently you can take turns pulling the ribbons at the bottom of the tank and one of them opens the trap door spilling the candy out. All the children knew about the ribbons and declared it not as cool as the ones that need a good beating with a stick. Leave it to me to not even question why a tank needs beautiful ribbons cascading out of the bottom of the chassis. I figured it was just to make the tank more "festive".

So I did read the Nature paper on Rett and the data seems really great for the bone marrow transplant - most notably for girls with RS before symptoms really appear. There is a line in there that states that for symptomatic patients, the recovery of skills is not very noticeable.

Wednesday, March 21, 2012



A few months ago, Vince declared that he was done sharing a room with Edda. It was a sad day for me because it means my kids are growing up. I feel it very strongly now, Vince and Edda both pulling away from me, growing up and away from my person.

We rearranged a lot of the furniture a few weekends ago and we are still knee deep in the mess that is made up of stuff you found hidden under beds and tables and chairs that haven't found a home yet.

I think I need more music in my life. I will try and find it.

Monday, March 19, 2012

Science moves forward.

Nature published a paper yesterday which showed that bone marrow transplant can arrest the development of symptoms of Rett Syndrome in mice. Here's an animation explaining the paper (which I must say was a little confusing when I watched it past my bedtime last night, totally exhausted from the day) -

Animation of Kipnis Nature paper from RSRT on Vimeo.

It is interesting to see that the immune system can be associated with the symptoms of Rett and that possible tweaking of the immune system can mitigate symptoms of Rett Syndrome. I'm so thankful that this work is being done and to all my family and friends who have donated money, thank you for making this a priority.  Even though this is very exciting news, my own feelings are one of cautious optimism - I'm the type of person who reduces expectations so that complete failure will not devastate me, and I also know science can be frustratingly slow and go in twist and turns and it's not like I can go out tomorrow and order up a bone marrow transplant for Edda.  I was talking to a friend today and I said that, "If Rett is cured in Edda's lifetime, it'll be a miracle." To which she replied, "It won't be a miracle, it will be science."

Here is the press release:

Sunday, March 18, 2012

iPad 3.

Vince has been saving his allowance and Christmas and birthday money for many years now and for his 10th birthday - he bought himself the iPad 3. We ordered it on the day of the announcement and I knew it was going to be delivered last Friday, but as luck would have it, I was out of the house on a vet visit for 30 minutes and missed the UPS guy. Jeremy and Vince ended up at 8:15 pm at the UPS depot with a line full of iPad junkies. Vince might have been the most excited one in line. I find it amusing that instead of standing in line at the Apple store - they stood in line at the UPS depot and had the same feeling of camaraderie without actually being on Apple property. Some guy in line jokingly offered to buy Vince's iPad from him and he said "No way!".


He did get the iPad engraved - it says: Vince's iPad Keep out! or else. which I find a bit unfriendly, but what the heck it's his.


Deb, Edda's OT, was interested in purchasing an iPad for use in her office - so Vince and Jeremy spent the afternoon showing her everything to do with an iPad. Vince showed her Fruit Ninja, Jeremy showed her how to type up OT assessments.



Friday, March 16, 2012

Summer in March.


It has been just beautiful here in Maryland this week - really warm and sunny. The kind of days that it seems like everyone who has an outdoor job is the luckiest person alive (like Ms. Sharon, our neighborhood crossing guard.) On the two block walk to Vince's school, there are so many beautiful things to see - there is nothing easier than taking beautiful pictures of blooms. You really can not take a bad picture of a flower.


Despite the beautiful weather, we've all (with the exception of Vince) been sick this week - Edda went down first and then Jeremy and finally me. Of course, we could tell that Edda felt bad and had a runny nose, but there was no fever and her sleep seemed fine, so we sent her to school every day this week. It was only when it hit Jeremy two days later and me the next day, we realized how terrible Edda must have felt those two days I sent her to school.

I've been struggling to figure out how we would celebrate Edda's birthday which is next weekend. Because Edda and Vince's birthdays are so close together, it really throws into stark contrast our inability to figure out parties that Edda would enjoy. A million ideas for Vince come easily - so fast that we said no to 3-4 different ideas in the span of a 10 minute discussion (and yet we somehow said yes to the crazy 4-hour party) and even though I'm willing to spend the same effort for Edda, it is hard to see what she would enjoy more than hanging out with us watching TV, and eating some ice cream.

But overall, it has been a nice week - I passed the last major hurdle at my job - I'm now a "primary examiner" which means that I can finally sign all of my work on my own. I'm very pleased. I was planning to celebrate grandly because I've been talking about this day for 4 years now, but since we have no child care and also we all feel like crap - I just asked (ok, maybe I made) Jeremy go to Safeway and get my favorite Greek yogurt flavor and Drumstick ice cream cones and we toasted each other in the last few moments before we ran into the night time routine.

Thursday, March 15, 2012

We are all 40.


I went to Boston this past weekend to surprise one of my best friends from high school - Lana - on her 40th.  She and Vince share the same birthday - just 30 years apart. She was very surprised and I was very happy to be there to celebrate with her and meet many of her wonderful friends.  One of her very best friends who brought the birthday cake to the party is named Jovi and when I came home and mentioned him to Jeremy - Jeremy immediately said that he knew him!    Apparently Jeremy and Jovi were pretty good pals in college.  Jovi has even met my father-in-law before.  Small world indeed.


One of Lana's good friends opened a restaurant called Casa B in Somerville - we ate there as honored guests and the food was delicious.



Wednesday, March 14, 2012

Birds and bees.

About a week ago, we were all in the car going somewhere really exciting (like Target), when Vince pipes up and asks, "What's a hooker?"  As a parent, one wants your child to ask you all sorts of questions like, "What is Avogadro's number?", "Do you think there will be peace in the Middle East?", and "What do you think of the Oxford comma?", one often doesn't think about answering questions about hookers (isn't that what friends are for? really.).

But not wanting to embarrass him or to squash his curiosity, we told him a hooker is a person who sells sex for money to which he answers "huh."  Jeremy steps out of the car to pick-up Chinese food (not at the Target, but maybe on the way home from Target) and I ask if Vince knows what sex is.  He answers in the affirmative.  I am not surprised but I do not really believe that he knows what sex is.  So I proceed to launch into a very clinical, but concise description of what sex is (basically the 30 second version) and I get the expected "ewwwwwww...... gross.....  STOP TALKING ABOUT IT, please!"  Edda remains unperturbed.  By the time Jeremy is back in the car with the Kung Pao chicken, the birds and the bees talk is all over.

Fast forward to tonight, we are watching Dirty Jobs, which is our favorite family night TV show (because it is the only thing we can agree on from the 10,000 things available on Netflix) and we are watching an episode about pig farming.  (It really reminds me that we should all become vegetarian).  Part of the pig farming farming episode is about artificial insemination.  It's pretty graphic (except that the pigs do not actually have any sex) and there are still unanswered questions like - "Is that pee?"  Ummm, the answer to that would be NO.  Vince had to hide behind the couch until the whole thing was done.

Yeah - it's exciting around here.


Tuesday, March 13, 2012

Mysterious mystery.


I do not like the unknown. I like things well defined and easily categorized. Of course, all of life is unknown and unknowable, so I have struggled with control issues for most of my life. I think if you ask most of my friends, they will tell you that I am warm, generous and relaxed - but it's because I've spent a lifetime squashing these aloof, selfish and controlling tendencies into the bottom of my feet.

So to add to a list of yet another thing I can not control is Edda's platelet levels. We took her off the most likely causitive drug, the Trieptal, and not only did the numbers not rebound, they went down (PLT, 53). So if you are keeping track, that's 77 around Xmas, 64 around the beginning of Feb and 53 at the beginning of March. So that if one extrapolates - that would be no platelets right around August. (Regular range 100-400). So we have no idea what is causing this and also no idea what to do about it. It makes me sad and anxious. Although Edda seems no worse for having low platelet levels which I suppose is good.


Sunday, March 11, 2012


Vince turned 10 on Friday and in the exuberance of it all, Jeremy and I momentarily lost our minds and let Vince plan a four-hour house party for 20 of his closest friends after school on Friday. How did we lose our minds and promise Vince this absolutely crazy plan? You know, he places his hand on my hand and give a little squeeze and then looks into my eyes and says, "You are the best mom ever!" and gives me a hug which may have included an Eskimo kiss. Well. I am absolutely besotted with the attention and Jeremy (as is his modus operandi) is just always agreeing to adventure without really thinking of the consequences.

I would like to say (now that the party is well over) that it went well.  Which means that we did successfully account for all the children and return them unharmed to their parents.  There may or may not have been arguments, crying, time outs, dry heaving on the verge of puking and wrestling, but now that the party is behind us, we will just say that it was a resounding success and also NEVER AGAIN.


Poor Edda, as she could have easily been a casualty in the melee, because of her unpredictable walking patterns, we needed to strap her to a chair for the duration of the party. As Jeremy said "lash her to the mast" a la Odysseus for her own protection!

The next morning, we donned some of the party favors and cleaned up the remnants of the pizza, chips and soda.


Wednesday, March 7, 2012

Doing things.

Daily care for Edda is always on my mind. Sometimes (ok, who am I kidding, it really is most of the time) I groan under the thought of finding care for Edda for the rest of her life. But sometimes I think that caring for Edda is a daily, meditative ritual which I could say brings me closer to God except that I am not a religious person so when I say closer to God, I'm not sure where I should be standing (more to the left maybe?  is that closer?). We all have our strengths, Jeremy loves food and I love to sleep, so these are the things we like to do with Edda.

Jeremy loves to cook special things for Edda. Edda has eaten oatmeal almost every morning ever since she started eating solid foods. Jeremy has figured out just the right amount of oatmeal, raisins, milk, brown sugar, heat and time to make a perfectly creamy steaming single serving of oatmeal. I have watched him do it many, many times and even though I know the amounts of each of the ingredients, it never fails that when Jeremy travels for work, my morning Edda oatmeal is just subpar. A little too grainy, a little too runny.

Just recently, Jeremy needed to start leaving the house earlier in the mornings and therefore this necessitated the transfer of the oatmeal cooking and feeding of Edda to our caregiver which in the grand scheme of things is not a big deal, but to Jeremy it seemed like he lost his primary time with Edda. I thought he was being silly, because I don't have this feeling about feeding Edda, but I do have the same feeling about putting Edda to bed.

I should bath Edda every night - goodness knows she gets enough food, slobber, etc on herself to warrant it, but I usually aim for a full bath every third night or so. Otherwise I just make sure the important parts are clean - she is not so easy to bath anymore - she is a big girl.


After the bath, her hair is blown dry and into clean PJs, I tuck us both into bed.  I think this may be one of my favorite parts of the day - I can feel the tension in Edda's hands relax, the teeth grinding slow down.  I can hear her breathing become more rhythmic and steady and then hear her snore just the tiniest little bit.  (I got new glasses! 25 dollars! God I'm so cheap!).


Tuesday, March 6, 2012

Jeremy's late!

Jeremy's home late tonight. Something about giving a talk to members of UCS. Are you not a member of UCS? You can become a member right: here and be invited to listen to Jeremy talk about things he loves like arcane policy minutiae (I think you get dinner too) all in a lovely DC locale. But even if you don't join and you are reading this blog, it is most likely that you are related to us or are our friends so I'm pretty sure we could convince Jeremy to fire up the PowerPoint right here in our kitchen and give you the whole spiel - we could throw in a beer and some take-out pizza and it would be fun!

Things are chugging along here on the child-care-free zone here. We are managing pretty well, meaning that Jeremy is taking a lot of time off of work and I've moved my office to the kitchen to try and oversee the chaos and work at the same time. This results in good things like seeing each other a lot more, but it results in a lot of bad things like burning through vacation/sick time, lots of unfolded laundry and (as my office is right next to the kitchen) a lot of eating. I think I've eating a whole block of cheese myself in the last day and a half which has resulted feeling a little bloated and guilty.

Speaking of food treats, Jeremy loves buying Popsicles for the kids even though I find innumerable sticky wrappers all over the house, stuck to doors, carpets and shoes. All the kids in the neighborhood know where to find icy treats in the middle of winter.


Monday, March 5, 2012

Off Trileptal


So we have weaned Edda off of Trileptal because we think that the Trileptal is responsible for lowering her platelet counts - I suspect that it is not that straightforward and that the platelet count will eventually be found to have no good reason to be the way that it is - but I'm thankful we have an excuse to take her off at least one anti-convulsant. As it turns out, (surprise. surprise.) the seizures have not returned and Edda's energy level has increased noticeably. No more reports of sleeping at school. A lot more whacking and flailing of the arms (which can be both a little dangerous and painful as one has to have the skill of a ninja to deflect the oncoming windmilling arms). A lot more teeth grinding (especially when falling asleep) and a lot more chewing of cloth (as seen in the above photo).

It was no surprise to me that the seizures did not come back. It has been Edda's habit to cycle in and out of seizure "eras". Lasting from 6-12 months, she would have seizures and then they would go away. It will also not surprise me that the seizures will come back. But I will take it as it is now, no seizures and a higher energy Edda.

This is going to be a very big year in terms of outlay of capital for modifying the house. We are going to *finally* get the stair lift installed in the next few months as well as eliminating the two steps off our front porch to our driveway.