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:
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 :).
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.
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.
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) –
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:
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.
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.