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!

Chase Community Giving--PLEASE HELP

Hi guys. The Gwendolyn Strong Foundation is in 6th place this morning, with only a few over 5,000 votes. The leader charity is over 12,000. PLEASE HELP. Please take 2 minutes to vote for the Gwendolyn Strong Foundation to win ONE MILLION DOLLARS of which 100% will go to curing SMA.

Please. Again, no one is researching SMARD (Dakin's condition) in the US. If SMA could be cured, SMARD might be as well. Please help my son to not have to be attached to a machine his whole life. PLEASE HELP. It literally takes two minutes.

All you have to do is become a fan of Chase Community Giving on Facebook, and then vote for the Gwendolyn Strong Foundation. You get 5 votes, but you can only vote for GSF once. If you are a Facebook member, go to www.VoteForSMA.com . From there you can become a fan of Chase Community Giving and then vote for GSF.

If you don't have a Facebook account, sign up! You can always delete your profile later!!!

PLEASE HELP!

Another Big Trip Out

Well, we had to be in Dallas on Wednesday for an RSV shot (BOO), so we decided to make it fun--I'm reveling in my newfound slightly-less anxiety. So after the shot, we had lunch at Chipotle. Dakin really enjoyed that--he ate a lot of tortilla and was very seriously checking out a blonde lady and her blonde daughter (did I mention he likes blondes?). So that was pretty exciting for him. We told him he needs to lay off the stalker behavior, but he wasn't listening.

After lunch we trooped across the road to Whole Foods. This is the first time that Dakin has been in a grocery store post-'crash', and he LOVED it! He was so interested in everything, and didn't get bored at all, despite the fact we were in there for an hour. He had fun checking out this rack of Gruyere and Emmentaler, and the lobsters, of course. The whole thing went so well that every time we are out there and need to go to Whole Foods I'm going to take him in. I feel safe taking him in there.
On the way home, he was, naturally, exhausted. Great day, all in all.
DON'T FORGET: Tomorrow (and through 1/22) you can vote for the Gwendolyn Strong Foundation to win ONE MILLION dollars to help cure SMA! If we can get a cure for SMA, it may help with Dakin's disorder. So I am asking, for this sweet sweet boy, please use your 5 votes on Facebook to help him. www.voteforsma.com

I'm Begging You

And I don't beg. You may have heard that the Gwendolyn Strong Foundation has a chance to win ONE MILLION DOLLARS from Chase bank. GSF has pledged to use the full one million to cure SMA and to raise awareness. With research being SO CLOSE to a CURE, they have to win. They just have to... if SMA research could at some time be approved for all SMA-family disease, it could be a cure for Dakin.

Imagine...my sweet boy walking. Or even just breathing without the help of a machine. No one in the US is researching Dakin's disease, so this is, literally, our only hope. Please, take a few minutes, beginning January 15th, to give my son a chance.

A chance to play in the rain without worrying about a ventilator, a chance to dance at prom, a chance to play kickball or jump in autumn leaves.

All you have to do is vote for the Gwendolyn Strong Foundation on the Chase Community Giving page on Facebook, starting on January 15th. You have 5 votes to end this killer forever.

The embed code:

I have accepted much with Dakin's condition--he will never walk, never go snorkeling...so many things I have learned to have to be ok with. But this contest gives me an opportunity to really hope--that's not something I get to do often. Help us out. Don't forget to vote and tell everyone you know. Thanks.

The Man Cave

I posted recently about how into art Dakin is at the moment. Not being able to sit up* has proven a small challenge, but not enough to deter him from producing massive quantities of artwork. After we discovered his affinity, our day nurse Jane brought a lap desk to enable him to at least see what he was doing.

And then, upon discovering he likes coloring even better lying on his back, she came up with this:

It's a plastic outdoor table that is just low enough for him to reach up and color on the paper taped to the underside. So we made it into his own 'man cave,' complete with a personal volcano. How many people can say they have one of those, eh? He LOVES playing under here.

This is an outside view minus the blanket. Ignore the medical supplies and toys scattered haphazardly everywhere. And yes, his legs are just like that--his quads are really strong, so he likes to kick his legs out.

*edited for clarification: he can sit up supported, but he can't raise his arms while doing so, which raises a problem for coloring.

Van Shopping

Today Dada and I went shopping for a modified van that can transport Dakin. We have, hitherto, been using our car and a carseat. He does great in the carseat (we finally got it forward facing!), but he will be too heavy to get him in there effectively before too long.

Soooo, we went shopping. We met with a wonderful lady in Tyler who talked to us about the financing as well as available options. These vans are amazing! I was baffled as to how we could get Dakin in his chair in one, but they are HUGE inside.

We are planning to have one by the end of April. We have some ducks to get in their row, and the stars need to align, but we should be able to pull it off. Wish us luck.

Tiger Creek

2010 is off to a good start! We decided today, on a whim, that we could no longer stand being stuck in the house and went to Tiger Creek, a local tiger preserve (you may have seen them on Discovery Channel? No? Well...ok). Luckily, the cold that has invaded all recently-made plans took a hike and allowed us warm enough weather to enjoy the whole thing.

Man, those cats are huge. It was amazing to go around and see these powereful, majestic animals. Of course, Dakin thought they were dogs and kept making an 'oof oof' sound. No amount of "No, baby, those are cats" would convince him. Oh well. So anyway...

Dakin was pretty interested in the cats, and they were equally interested in him...many of them sat and stared him down--I don't know why. Maybe the sound from the ventilator? The fact he was on eye level with most of them? At any rate, this lion, though you can't see it in the pic, was steadily pacing back and forth in front of Dakin. Scary...
This was another one who was pretty agitated by the sight of Dakin. He's special, this one, because his stripes are red instead of black, a recessive genetic trait that only about 100 tigers in the world share. So we know how he feels. He was pacing back and forth too, staring at Dakin.

This white tiger was another one...look at his eyes. Yikes. Ok, these two decided to fight right in front of us. The male evidently bugged the female somehow and they got into it--this pic was taken in the midst of them fighting. They were roaring loudly--I was thinking Dakin might be scared by it, but he was laughing through the whole thing. Yeah, my toes are curling in my shoes from fear, and the kid is laughing. Whatever.Anyway, it was a ton of fun. We also decided to go to Chili's (we don't usually take him out like that during flu season), and of course the staff was more than accomodating and wonderful.

We decided we need more 'Normal People Days'--days where it's just us and we do things that normal people do. It was incredibly refreshing.