Jailbreak

I walked in Dakin's room the other morning and this is what I find: Somehow, he managed to scoot himself from the center of the bed all the way to the side. His arm was hanging out and he was laughing his head off. I'm sorry this picture is so dark! He grabs the rails in his crib and half-pulls, half wiggles his way over. So much for a neuromuscular disease. :)

Leeping Bag

That's what Dakin calls it. Hitherto, it had been a pillowcase with trucks on it, a gift made by Great Grandma. Then Dakin discovered it and it became a blanket. Then today, the ultimate transformation: a leeping bag. Doesn't he look cute in it?

He insisted on staying in it for his nap, and wore it in his power chair afterwards. He is snoozing in it in bed right now.

Silly boy.

Baby Doll

We found this picture on our day nurse's iPhone...Dakin couldn't have been more than 20 months when it was taken. Doesn't he just look like a doll? I LOVE this picture!!

Synagis and the Aquarium

Fun Fact: when my brother and I were little, my mom used to joke that she would have to claim the stingrays at Sea World as dependents on her taxes--that's how much money we would spend on fish to feed them. True story. I love stingrays. Don't know why.

Dakin got to experience some stingrays up close, though not necessarily personal. On Wednesday we had to go to Dallas to get Dakin's first Synagis shot, so we decided to do something fun as well. We went to the Children's Aquarium at Fair Park--a nice little aquarium with all kinds of fish (no, really!!) and, most importantly, stingrays. Dakin's favorite part was this big shark tank. There was even a little pond where you can put your hands in and touch the stingrays. We got Dakin as close as we could to the side of the pond (the walls were clear, thankfully), and I stuck my hand in to get their attention. Thinking that my wiggling fingers were fish, they came over and said hi.

OK, and look at this shirt--"This is how I roll." Hilarious, right? So perfect!

Feel Like Smiling?

Then check this out. This is Dakin dancing to "Shakeable You" (of course, Imagination Movers. He just loves them). The fun part about this is he is moving the right body part when they sing it. Hilarious!

Karson

Karson passed away. Sweet blue-eyed Karson.

He, like all SMA children do, fought courageously through SMA and lived and loved through the limitations it placed on his body. Despite those limitations, it never owned his spirit.

I have racked and racked my brain for an appropriate tribute for Karson. I keep coming back to Butterfly--I am not certain there is a better one. Strangely, and in ways I can't fully explain, I have found a lot of healing in the lyrics of this song. Though it is little and will neither take away the sorrow nor dull the pain (though with all my heart I wish I could), we offer this to the Riggs family, along with love and prayers and knowledge that where Karson is now there is no SMA.

Butterfly, by the Imagination Movers

Butterfly, won't you spread your wings,
Above the green grass and everything.
Got to fly.
Every color floating under the sun,
Paint a picture for everyone,
In the sky.

Butterfly won't you fly away,
A flash of color on a sunny day,
Friend of mine, won't you spread your wings and fly.
(Bye bye butterfly, hope he's never far away)

Butterfly floating in the breeze,
Across the flowers and over trees,
High and low.
Flitter out, putting on a show,
Fly away when I get too close.
Where'd you go?

Butterfly, time to fly away,
A flash of color on a sunny day,
Friend of mine, won't you spread your wings and fly.
(Bye bye butterfly, hope he's never far away)

Pretty little butterfly,
Painting pictures in the sky,
A flash of color overhead,
Purple, yellow, bronze and red.
Pretty little butterfly,
(Bye bye butterfly, hope he's never far away)
Hope you're never far away.
(Hope he's never far away)
Hope to see you in the sky.
(Hope he's never far away)
Flying on a sunny day,
(Hope he's never far away)
Butterfly.

Goodbye, Karson. Hope you're never far away.

On The Mend

Yep. Dakin is back to nearly baseline, and I am SO glad. I was really starting to get afraid that this was his new baseline and he would need oxygen all the time. But once we started concentrating his CPT on that upper right lobe, it just opened right up and he is back on room air with a lovely 97-100% O2 saturation. Hooray! All things considered, he weathered this cold pretty well--we just weren't getting the right area of his lungs with the CPT.

We had a lovely day today--he helped me clean the house (which had been sorely neglected since he had been sick), and played all afternoon. Tonight he rocked out to his Ma Mao music (Imagination Movers) and entertained everyone by saying the words along with the music and dancing. He's in bed early since he decided not to take a nap for the second day in a row.

Quick Conversations with Dakin entry:
Mommy: Dakin, are you a cuteface?
Dakin: Yeah.

See? Back to his normal center-of-the-universe behavior.

(*sorry about the rambling entry. I have no cohesiveness in my brain at the moment.*)