Friday, February 26, 2010

Because...

Because you are the most precious boy ever.

Because I can't get enough of this smile, and I don't know how I lived before it. Because your eyes squinch so tight when you smile like this that I don't know how you see.


Because your joy is infectious, and your spirit so bright. Dakin learned how to blow bubbles the other day in Speech Therapy--that's what the first pic is. Thought you might enjoy a video too. Just because.

video

Wednesday, February 24, 2010

Another Quick Way to Help

Hi all. Victoria, Gwendolyn's mommy, has been nominated for the Hero Next Door award at Care2. The winner will receive 5000.00, all of which, if she wins, Victoria has pledged to SMA awareness and cure. Help her out! The voting only goes through this week, and is quick and easy. Vote here for Victoria.

Truly if anyone deserves to win an award such as this, it is Victoria. She tirelessly champions the cause of SMA children, and is an amazing ambassador for them. Of course, by extension she also is representing the handful of SMARD kiddos. Her courage, drive and creativity never cease to amaze me, and I am proud to call her friend.

Please take a few seconds to vote, and repost this! Thank you!

Sunday, February 21, 2010

Sunday

We chanced church this morning. It went well...I didn't see anyone hacking or throwing up, so we should be in the clear. Dakin even got to participate in the Nursery lesson--the sweet girl in charge of Nursery brought the other little boy who was in Nursery into the Primary room and we had a little lesson, followed by coloring (Dakin was hooked after that. :) )

I was reminded again this morning how lucky we are to have the church family we do. The kiddos all know Dakin, and are concerned for him, and try to include him. One of the little girls was worried because I had laid him on the floor to relax--she wanted to help him, but one of the leaders let her know he was ok, and it's better not to touch him. So sweet, these kiddos are. We are truly lucky.

Friday, February 19, 2010

Idea Gathering

Hi all! OK, so I have done my research, and we now have a number on what we would need to get a handicap-accessible van for Dakin. Yee hah! It's nowhere near as much as I was envisioning. Now we're looking at about 33,000.

Obviously, we can't raise that much. But what I'm thinking is that if we can raise as much as possible, it would help the monthly payment.

So what I'm asking for are your ideas. What fundraisers have helped you out? Low overhead and large income? If you have a good idea, please please let me know!

I do have a few little things up my sleeve, and I will be posting about them later...

Wednesday, February 17, 2010

Awe.Some.

So with the Olympics going on, I have been thinking about sports for Dakin. Granted, he's probably not going to be on the local soccer team, but that's ok. Know why? Because there's...

POWER SOCCER!!!

Yep, that's right. Soccer in a power chair. Just for your information, the USA Power Soccer Team are the reigning World Cup champs. So cool, right?

All you need is a little bumper thing on the bottom of the chair and a little bigger ball and you're good to go. Well, I guess you also need a team, of which there is a major paucity in our area, but fear not. We'll just start our own. I won't tell you the name, though, because it's too cool and someone will steal it.

Ok, maybe I will. I can't resist. The East Texas Rolling Thunder. I know, right? AWESOME. Let it be known that if someone steals our name, they suck. But I digress.

Anyhoo, once we get Dakin's power chair, we are going to work on soccer. I think he's going to have a ball (tee hee) pushing around a soccer ball in his chair. You can even go to power soccer camp. Awesome!

We also have a winter sport picked out. Turns out that the only paralympic sport in chairs is curling. I found some neat pics, but I can't upload them for some reason, so check them out!!
So not only will he be a genius hedge fund manager, he will be an Olympian and a soccer star.

Ok, so I know there was a lot of 'awesome' in this post, but I'm excited!

Tuesday, February 16, 2010

Amazing


I had another post in mind for tonight, but I have changed my mind, because my heart is really full right now.

You know, something I didn't expect from having a special needs child is how much joy he would bring to me. I swear joy runs in Dakin's veins in place of blood. He is so happy, so excited. I love--and feel so privileged to be able to--see the world through his eyes. The smallest things bring a smile to his face, and he always wants to share them. We were watching the Olympics tonight, and he was so interested in the downhill skiing--something I usually find boring. Watching his reaction to it made me stop and take a second look at the beauty of that sport. Something I would have completely missed without him there.

I love how he will find something that brings him joy, and say, 'ma ma' to make sure I see it. He'll point with his eyebrows raised and mouth slightly open in the direction of the object of interest. Now, since Dakin finds everything interesting, I hear 'ma ma, ma ma, ma ma, ma ma' all day. I am so grateful I get to hear that sweet voice constantly.

The other aspect of this is the joy I get to have from his accomplishments. Watching him string a bead or put a cap on a bottle is a miracle. Every little movement that he 'shouldn't' be able to do is amazing. I am so blessed that, due to the nature of his disease, he has taught me to slow down and treasure every movement, every laugh, smile and moment.

If you know me personally, you probably know I get caught up in moving forward, in motion for the sake of motion. I have a really hard time just sitting still and being. Dakin has helped me change that. That pause is not something I would have learned in any other situation.

Anyway. I know this wasn't terribly well put together, but like I said, my heart is full. We lost our night nurse, so I have had the privilege of spending more time with Dakin at bedtime, and it's in those little minutes that I am truly reminded how lucky I am to be his mom.

So so blessed.

Saturday, February 13, 2010

Last RSV shot

When I started The Daily Dakin, I did so in hopes of being able to be helpful to others in similar positions to ours. I hoped to be able to be somewhere that newly diagnosed SMARD families could find and connect--something we had a hard time doing when Dakin was diagnosed. I wanted to offer them friendship and fellowship, or a shoulder to cry on.

While I feel that aim has been, and is, largely being accomplished, this blog has become something else to me as well. It's become a companion on our journey with Dakin and his extraordinary-ness. It's become a journal, a place for me to record the bits and pieces of our life and the joy he brings us. It has brought me a lot of peace.

So I apologize if things get repetitive sometimes. I just feel a need to write everything down. I know some of the things I write about seem so silly--going on a walk, eating out. And it may be silly, but these are huge things to us, and bits of the mosaic that make up our lives. I want all those things recorded. Forgive me the repetitiveness.

Anyhoo...that being said, I wanted to report on our trip to Dallas the other day. It was Dakin's last RSV shot, and he cried from the moment we rolled into the office. Not fun. He looked at me like I had betrayed him...

It's done, though. We probably won't get another one.

After, we had lunch at Ziziki's, a Greek restaurant. I ran in first and explained the situation, and the hostess helped me wipe down the table. They were so nice to us...I love when they do that. They brought Dakin some crayons and a kids' menu, and he was happy as a clam while we waited. Our day nurse Jane had the great idea of bringing one of his books, and so while we ate, he looked at his book and nibbled on pita.

Thursday, February 11, 2010

Snow!

We got some of the southern storm. It has snowed all day here, and I believe it might still be going now.

Of course, I couldn't pass up the chance to let Dakin experience it. I bundled him up as best I could and put a towel on the vent, and we ventured outside.

Yep, you can see how thrilled he is.
We made a snowman! A tiny one. He's pretty icy since the snow was definitely not ski quality, and in fact due to the wetness of it we weren't in it long. Dakin enjoyed watching it a bit more from the shelter of the porch.
We finally retreated inside and watched through the window. I'm so glad he got to touch the snow (not thrilled with that either) and feel it fall on his face. It was wonderful watching it fall--reminded me of the Great Frozen North from whence I come....

Saturday, February 6, 2010

video video

Yay! Finally some video. The first one is him saying 'yeah.' I love his little voice! The second is the singing--on Little Einsteins they have a classical piece for each episode, and they usually put words to it. He can do the word fill in for a lot of them, since they use easy words like mommy, etc. 'Da' in this context is 'duck.'

Enjoy!

Wednesday, February 3, 2010

Storytime at the Mud Hut

This is something I have been wanting to do with Dakin for a long time. Not too far from our house there's a wonderful place called The Mud Hut (you may remember that's where we got our custom ceramic pumpkin for Dakin). They have storytime for the kiddos and do a painting project with it, and since I had a car today, we decided to go.

It was so much fun! I was worried Dakin wouldn't be interested in the story--though he LOVES to read--because there were cute little blonde girls around. No need to worry there--he was far too interested in the cars going by to even look at the girls.

We did have something of a technical diffiiculty, though. The fuse blew on the ventilator battery (though we didn't know it until later), and we had no power for the vent. So we had to bag him--he loves being bagged--but it worked out anyway. That's the blue thing attached to his neck, in case you were curious.


Once he realized how like coloring painting is, he was way into it. He got annoyed and yelled "mama!" when I took a few seconds to paint my tile.

He wouldn't keep his fingers out of the paint.
Here are our tiles, pre-firing. The colors will be much more intense after firing, and I wanted to wait until then to post, but I also wanted the memory to be fresh, so I decided on today. The one on the left is mine--the heart, though you can't see it, is made out of his two hands. We didn't get it quite perfect, hence the lopsidedness of the heart. Isn't his beautiful? He decided pink, red and purple weren't enough and wanted yellow, so he got it.

Tuesday, February 2, 2010

Sweet Hodges

Our prayers and thoughts are with Hodges' family.


"Fly, fly, little wing.
Fly beyond imagining,
The softest cloud, the whitest dove,
Upon the wings of heaven's love.
Past the planets and the stars,
Leave this lonely world of ours,
Escape the sorrow and the pain,
And fly again.
Fly, fly, precious one,
Your endless journey has begun,
Take your gentle happiness,
Far too beautiful for this,
Cross over to the other shore,
Where there is peace evermore,
but hold this mem'ry bittersweet,
Until we meet.
Fly, fly, do not fear,
don't waste a breath, don't shed a tear,
Your heart is pure, your soul is free,
Be on your way, don't wait for me,
Above the universe you'll climb,
On, beyond the hands of time,
The moon will rise, the sun will set,
But I won't forget.
Fly, fly, little wing.
Fly where only angels sing.
Fly away, the time is right.
Go now, find the light."
--"Fly", Celine Dion

Yet another reason why I love CMC Dallas

Free valet parking (at least for us). Yes, folks, Children's Medical Center in Dallas has valet parking--at the front entrance of the hospital. We decided to brave the quoted 6.00 fee and save ourselves the trouble of parking in No Man's Land, and boy, I tell you...it was worth it, especially as it ended up being free. 3.00 off coupon from inside the hospital, and 3.00 off because we have a handicapped placard! Yee hah! FREE!!

Heh heh. Yes, another reason I love them. Fantastic rooms, room service, Purell that smells wonderful, awesome TV channel selection, and now free valet parking. It makes me glad that if/when Dakin needs to be hospitalized, it will be there. That sounds strange, I know, but it's nice to know what to expect at least facility-wise if that should ever happen.

Anyhoo, Dakin had a cardiology appointment today--one of his little SMARD buddies had an extremely serious cardiac event last August, and so Dr. Iannaccone (neurologist) decided it would be good to get a cardiac baseline for the D.

He was extremely patient during both the echo and the EKG. Their standard procedure is to sedate, but we said forget it. Our drug of choice to keep him calm was Little Einsteins, and it worked like a charm.

Everything looked good. His heart rate is higher-ish, admittedly, but that's definitely normal in a kiddo with his array of schtuff going on, according to the cardiologist. So we are good to go cardiologically speaking--hooray.

And besides, nothing can possibly go wrong on a day where you have Chick-Fil-A for breakfast!!