Anna's big plan

When Anna grows up, she wants to be a princess. Not so unusual for a little girl, I guess. It's just sweet how she's convinced it will work out somehow. I told her that she'd have to marry a prince, and that there aren't really any in Zeeland. She said she'd take a bus to get to where they are. I told her that that was fine, but she had to go to college first so she could have a job she liked. "Princesses don't work!" she said. She also told me that I could be one of her maids. I declined that offer. She already acts like I'm her servant as it is. I told her she better put me up in a nice room in her castle and I would have my OWN maids. And they would have to listen to her maids complain about high maintenance she is. How she has to have her cereal in a certain bowl, with a cup of milk, the proper spoon AND a napkin, or she will flip out. And if her chair is cold there better be a blanket on it, and they better cover her up with it when she wants them to (even if they just asked her two minutes ago if she wanted to be covered up) or ELSE!

Seth's first "girl" friend

Since a few months into the school year, we've been hearing about Bella from Seth. First they were best friends, and then there was some drama and she didn't talk to him for awhile (I was never really clear on why-it sounded like he got involved in some girl drama where Bella told Seth to ask Emma and Sarah something and then Bella didn't like the answer and blamed it on Seth. But Seth is hard to get information out of, so who knows.) Anyway, they are apparently friends again. Which, according to his teacher, may not be a great thing, since she said that Seth and Bella and another kid all feed off each other, but Seth can't reel it back in like the other two can so he ends up getting in trouble.

Well, it just so happens that Bella goes to our church. Today we were coming in at the same time as she and her dad were, so they just HAD to sit together. At first I thought it would be trouble, but her dad was pretty intent on making sure she paid attention, so Seth actually was too. I usually let him play with something because it's hard for the kid to sit so long, but Bella's dad wasn't down with her playing, so she and Seth followed along in her little mass book (the kids all got one last week). It was pretty cute. Especially when were driving away and he said, "I miss Bella already. Can she come to our house some time?"

I'm just so glad he's finally feeling like he has friends. For awhile, he was having trouble with that, but now it sounds like he's been playing with a few kids in his class. His teacher told me a while back that he would always hang out with her on her recess duty day, but when we talked the other night, she said he doesn't do that anymore. I just think now he thinks school is mostly about having fun and socializing. Sounds kind of like his grandpa. :)

Family "Fun" Night

I'm sure everyone has some version of this at their school. It's evil. Awful. NOT FUN! Last year, they caught me off guard since it was our first year, and called me at home and asked me if I would volunteer for a booth. Since I'm not good at saying no, I said I would. So that's how I ended up in the school with 1/2 million other people, in charge of a game where the kids had to smash a rubber mallet down on a device that would then fling a stuffed frog towards a bucket-if they got it in they'd get a prize. And the lady I was with took it, like, SUPER serious. It would have been bearable if she had not been Super Family Fun Night Mom, but as it was, I was stuck for 1/2 hour (or was it an hour? or was it three days?). By the time I was done, my own kids had already been through all the games, so there was no "family" about it for me.

So this year, somebody called me again. Luckily I wasn't by my phone, so I didn't have to worry about it. I have NO problem not calling somebody back. I don't care if it helps the school, I am not doing it! I don't even want to go! Can I just send a check for the ten bucks we'd spend? I know, I know, I'm a bad mom. Oh well.

Another doctor?

Seth has been having trouble in school. Not academically, his teacher says he's right or ahead of where he should be. No, he has trouble listening, focusing on his work, settling down once he gets going, just basically doing what he's supposed to be doing. It's been gradually getting worse, he's been getting more notes home as the year has progressed. Tonight his teacher actually called me because he had such a bad week and she just wanted to talk about it. I was hoping it would get better as the year went on, but that's just not happening.

I hate to say it, but I think it's time to get him evaluated for ADHD. It's definitely not uncommon in boys with DMD to also have attention issues. The two main things I think he has going on (and even struggles with at home) are staying focused and impulse control. I sometimes think it's the kind of thing that if you take a kid in, they're going to come out with a diagnosis...hopefully that's not the case. I really want meds to be the last resort, but if that's what will help him, then I suppose we'll come around.

Anyway. It's definitely not something I want to have him go through, but obviously I know there are worse things in the world. And school's just going to get harder and require MORE focus, so I don't want to keep waiting and then he has to struggle even longer. Like his teacher said, it's a good thing he's so smart...but smart will only take him so far if he doesn't get things done. I think I'll talk to his pediatrician about it next week (sometimes it's nice to work in the same office as her, for sure!)

No cataracts!

We finally made it to the opthalmologist appointment yesterday, everything looked good. I don't think cataracts start this soon, but it's nice to hear anyway. Besides, I read that in most boys, even if they DO get cataracts, they don't usually interfere with their vision. And hopefully the Ataluren will be approved (and work!) before we have to worry about that.

Speaking of Ataluren, I asked a lady that works for PPMD if she knew anything else about the time frame. She said that results are expected in the first half of this year (let's go people, it's March!!!) and then approval early next year. The waiting kills me, BUT I have to try to remember that the boys with deletions or duplications have a lot longer to go till drugs are even in TRIAL. It's just really frustrating for all of us to have all this technology right on the verge but not HERE yet. It's a lot more hopeful than ten or even five years ago, though.

This morning Seth said something to the effect of "if Anna had what I have, then SHE'D have to take these medicines too!" And I told him that girls usually don't get it and tried to explain the genetics of it in a 7 year old way. And then he said, "is it bad?" I asked, "Is what bad?" He said, "what I have-muscular dystrophy." I'm not ready for these questions yet!!! I just said that it can be, which is why he takes the medicines and does stretches and therapy, which satisfied him for now. It's just one of those things where we don't want to tell him too much but also don't want it to be a big "reveal" moment when he gets older, either.