First Day of Winter

I don't know if the 6 weeks of 115 degree heat we have during the summer is really worth a shorts/t-shirt first day of winter, but Dakin seems pretty happy about it. :)

Conversations with Dakin--Yogurt

Day Nurse Jane (feeding Dakin peach yogurt): Dakin, what color is this yogurt?
Dakin: Yellow.
Jane: And what flavor is it?
Dakin: Yellow.

So My Kid is Bulletproof?

Ok, not really. But it kinda looks like it. Don't you think? See that white thing around his chest? That, my friends, is a spinal jacket. It's purpose is to help straighten out Dakin's back and in general make things easier for him.

We were fitted for it a month ago--an experience I didn't write about, maybe because the whole thing was only slightly preferable to a stint in a gulag. Nightmarish, the fitting was.

Today wasn't much better--think maybe a root canal minus the drugs. The second we parked the car Dakin was saying, "No guy up! No guy up!!" (The orthotist had to stretch him out for the fitting, suspended over two stools--oh, it was horrible). He kept with that same theme the whole time we were in there--'no guy up' and 'no owie!'. Tears and gasping later, we got the jacket on and all of a sudden he was three inches taller. Amazing.

It will take some getting used to, but he only has to wear it when he's in his stander, lying down or in his old stroller. So yay. He rode all the way home in it and was happy as a clam.

Bridging the Gap--Announcement!

In keeping with the spirit of awesome announcements recently, here is another!

Introducing..

Bridging the Gap!

Bridging the Gap is our new SMARD blog, created for these intents:

• To give the SMARD community a place to communicate
• To help raise awareness of SMARD
• To forward SMARD research

So come check us out! We will continue to be here at The Daily Dakin as well, so you can get your (sometimes) tri-weekly Dakin fix. :)

Too Much Cute

I have been meaning to write down some of the amazingly cute things Dakin has been doing, but I keep forgetting. No more! This is really a post more for me than anyone else, but someone might find these funny.

1. When Dakin is lying on his side, he can raise his leg in the air and leave it there pretty much indefinitely. He was playing with his markers on his side and a few minutes later I came to pick him up and there were thirteen markers up his pant leg. He just put them in the leg hole near his ankle. Silly thing.

2. With the aforementioned markers, he had them to play with before he went to sleep the other day. The room was darkened, I was on the computer and he was being quiet, so I wasn't watching him too intently. When the lights came on after his nap his entire face was green. He had managed to get one of the caps off, and, well...he looked like a black ops guy.

3. He has a few favorite phrases: "Over that way", "over here", and "broken" are among them. He tells me where things are and which way he wants to roll with 'over that way' and tells me which eye itches with 'over here'. He was drawing a truck the other day and left part of it off. I asked him where the rest of it was, and he looked at me and said, "broken."

4. He also loves to say "fix it" after telling me something is broken.

5. If something isn't in use, it's taking a nap. If I put down something he's looking at, he'll tell me it's taking a nap. He snuggled his hand up next to me the other day and it was, too, taking a nap.

6. I think it's adorable that he can tell me which Imagination Movers episode a song comes from within three seconds of the song starting.

7. He says, "goo me" after he burps.

8. He was hiding under something the other day and we asked him where he was. He said 'gone.' That's his other favorite new thing to say. If I am searching for something, it's always 'gone.'

Hm, I think that's it for now. Again, this post is more for me. But I hope you enjoyed it anyway.

Hanta Pictures

That's what Dakin calls Santa. Hilarious, right? Like the Hanta virus? Ok, maybe it's only me who thinks that's funny. Anyhoo...here's this year's Santa picture. You will note how thrilled our little hero is by all this. I was hoping it would go like last year's pic...but you know what they say about the best laid plans of mice and moms... We did get a better one where Dakin was in his chair, but I can't get it to upload. Boo Photobucket.

See our same sweet Santa? This man is so kind and gentle with Dakin, and remembers him every year. He loves seeing him, even if the feeling is (at least this year) not mutual (boy, you should have seen the tears!!).

And again, our wonderful friend T at the mall made us an early appointment, came in early so we could do this, let us Lysol the set (and Santa himself!!), and even got Santa a new pair of gloves right out of the box just for Dakin. I know I have said this time and again, but we are unspeakably grateful for these people. Three years in a row now they have bent over backwards for Dakin. And we can never repay them for it. We are so blessed to be put in contact with people who want to help Dakin. Truly, immeasurably blessed.

Exciting News!

Hi all! We have a seriously amazing announcement to make! My friend Lisa, who is also a SMARD mom, has been working with the Manton Center at the Children's Hospital in Boston. The Manton Center researches orphan diseases, and has agreed to actively solicit doctors to begin researching SMARD!! YAY!

The tiny but awesome SMARD community has come together to help this study happen. My plea to you, dear readers, is that if there are any other SMARD families out there, please contact me so we can get you involved in the study. The more, the better!

I personally want to thank Lisa and all her hard work. I can't believe how far we have come in the last two years since Dakin's diagnosis! When we began, there were next to no other families to commune with, little by way of information on SMARD, and no research we were aware of. Now we have (found out about, thanks, Victoria!!) genetic research going on, as well as the promise of active research, as well as a wonderful community. YAY!