Bubbles: Bigger and Better

For Christmas Dakin got a huge bubble maker--it's really just a ribbon thing, nothing too fancy by way of design, but he loves it! It was warm enough out the other day to take it for a spin. See how huge they are?!

This one Dada had looped all the way around him.

Fun stuff.

Bragging

It's been a while since I've done an update on the little things Dakin is doing, so I thought tonight would be a good night (killing time waiting for Dada to let me play Warhawk). Besides, it's just a good thing to do.

1. His newest trick is saying 'yeah'. It's the cutest darn thing ever--I love his little voice. I'll try to get a video of it. We're trying to get him to do it at appropriate times, and he's getting there. Speech says she would prefer a 'yes' but we'll take a 'yeah'. He's very funny with his speaking. He's so communicative, but he does it with eyes and gestures more than words. He is behind on speech, but who can blame him with the trach? We're progressing, though. He can make syllables that are difficult for most kiddos at this age (according to Speech) but then can't or won't make some of the easiest sounds. Example: la and ra. He has no problem saying either letter, but can't/won't do pa.

2. He is just too darn smart. When he watches Little Einsteins, he will answer the questions they ask, and most of the time get it right. I don't know if it's crazy coincidence or if he really is getting it. I prefer to think the latter. :)

3. He gets his whole body into things: for example, raspberry blowing. We had a raspberry battle the other day, and he definitely won because we were laughing so hard at how he does it. He doesn't just move his face, he moves everything he can. It's too funny.

4. He is beginning to be so interested in things. He has loved butterflies for a long time, and now he's really into cars. He's also interested in rainbows and the plants I am sprouting on the table. I love seeing him 'wake up' mentally and really learn. It's hard to tell how much he takes in, since he doesn't do much by way of feedback, but if you question him later he's got it.

5. He likes to sing with me. (I HAVE to put a video up of this.) We have 8 or 9 songs from Little Einsteins that I'll sing and leave a particular word out of, and he'll fill it in. It's amazing!

OK, enough bragging for tonight, I guess. Hope you all are having a good day!

It's the most wonderful time of the year

Ah yes. January in East Texas. One could call it winter, I suppose, but a better term would be chaos. One day it's 65 degrees and not a cloud in the sky. The next, it's tornado warnings and a cold front dropping the temps to 40. Rain, then dryer than you can imagine.

Basically what it amounts to is long nights 'round here.

Vent dependent kiddos are suceptible to the weather, and Dakin is absolutely no exeception. For the last while we have had to have him on o2 at night to help with the changes, and we have had to adjust his vent settings some. It is absolutely not helping that the poor guy is constipated AND the fact I think he's dealing with some allergies. Add that to being really tired this week from some scheduling things and there you go. Oxygen, please.

Sigh. We need Arizona weather. At least that's a good honest hot or not hot. Not this up and down and sideways and backwards. I have never lived in a place where the weather is this bi-polar.

AGH!

Random Acts of Cuteness

Just thought some cuteness might be in order. I can't stop him from coloring on himself. I have pretty much given up trying.
This smile could melt a glacier.

Enough said.

Hope

You may have heard, but the Gwendolyn Strong Foundation did it. Yep, they stuck it out in 6th place to win 100,000 dollars to help cure SMA. I am in awe of what I watched Gwendolyn's family--and indeed the SMA community at large--accomplish in one week. 52,000 people came together to help cure this. 52,000 people--celebrites, singers, a major TV producer, parents, friends and family united to give hope to children who have little.

It was amazing to watch. A true miracle. 52,000 people who believe in hope.

I know I have talked about this on multiple occasions, but I am feeling it very strongly tonight. I got to thinking about how much that hope means to me. I used to see hope as hope for something I wanted for Christmas, or hope that it wouldn't rain. It's so much more now.

It's a lifeline.

Without that hope, I'm not sure how well I'd be handling Dakin's condition. I mean, I am not living in a place where I have rose-colored glasses on about the reality of Dakin's condition. I get it. I know it. I know what could happen. I know that no one is even looking into treatment for his condition, at least in the US. But I also know that if something could be developed for SMA, there is a serious possibility it could help SMARD as well. And as thin and distant of a hope that that is, it is hope all the same.

So tonight, I have hope. And I am grateful to those who helped provide it for me...the Strongs, and all 52,000-ish people who chose to believe too.

Thank you. It means more than I could ever say.

Butterfly Garden

So I know it must seem awfully early, but living as far south as we do, it's just life. Yes, folks, not even a month after Christmas, and we have to start seeds if we want them for Spring. So we had a few planting days this last week to get these guys going into a garden for us. We started with a few little pots:And went on with a ton more. In addition to my herbs, we are growing a butterfly garden of milkweed, zinnias, parsley and dill. Hopefully they will want to come visit it and we can watch them.

Dakin had a good time with the planting. He wanted to be involved with the whole process--from stirring the peat pellet up to getting his fingers in the dirt.

And look! We already have sprouts!

**UPDATE** The Gwendolyn Strong Foundation is still in the fight--6th place as of tonight. Please help by voting at http://voteforsma.com/ and tell your friends!!!

Help GSF Catch Up!

As of this morning, the Gwendolyn Strong Foundation is in SEVENTH place in the Chase Community Giving contest. Let me remind you: the winning charity will receive one million dollars, but even those who place through 6th will get 100,000.

Please please please if you haven't voted already, do so. We need your vote!!! http://VoteForSMA.com It takes 20 seconds and can help save the life of a child...maybe Dakin's. Let your friends and family know. We need all the help we can get!