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.*)

Wow.

This morning I packed Dakin up and took him to vent clinic, entirely certain I would be spending tonight in the hospital with him. That snot has not cleared up, and I was thinking pneumonia, etc., etc.

We got there at 10, signed in (we were first again! Ha!), and went to lunch at a Mediterranean restaurant, where Dakin enjoyed some thyme pie and told me the salt shakers were buoys.

Then back to clinic for our appointment at noon. The RTs came in and ran all sorts of tests: nose swabs, RSV tests, blood gases, etc. Our amazing nurse prac and awesome pulmonologist popped in and said they thought it might be pneumonia (oh goody). A few minutes later, and they were back. Contrary to the pneumonia declaration, they said he just has some atalectasis (lung collapse) in his upper right lobe. They sent us home (YAY!) with some Tobramycin, some Pulmozyme and directions to continue aggressive CPT on that lobe. No problem there: I am the CPT queen.

So thank goodness. I even had the hospital bag packed and ready in the car. They also said his weight gain was good, which was a surprise.

In a spirit of celebration, we went to Whole Foods. We're big partyers.

Now, to the wow. When I got home there was a letter in my mailbox from Dakin's insurance company. (Background: earlier this year we had asked, and had been rejected for, Synagis shots to protect Dakin against RSV--a very very bad virus. We appealed the decision and were waiting to hear a response). ANYWAY. So the letter said that they had forwarded our request for Synagis shots to their medical specialist. The specialist evidently told them that with Dakin's disorder, yes, he needs Synagis, and not just for this RSV season, but for every RSV season for the rest. of. his. life.

Wow.

I am absolutely flabbergasted. I can not believe that this has happened for us: I never have to worry about those shots ever again.

We have been very lucky with Dakin's insurance company: they have always treated us with integrity, but this is absolutely above and beyond. I am shocked and grateful.

And I really hope that wherever their specialist is tonight, that she is having an amazing week.

Snow!

Yep, we got the forecasted 1-2". Yay! Dakin was very excited about it and kept saying 'no! no!' (snow). I told him after his nap that we would go outside but we needed to wait a minute. After a bit he was saying 'all done minute'. He just couldn't wait to get out.

He enjoyed watching Mommy and Daddy pelt each other with snowballs. He didn't want to come in, but as it was 27 degrees outside, I figured being out for too long wasn't a good idea...

Getting By

Well, it has been a very long week of snot. And boy, do I mean snot.

What I think happened is that this whole thing started as a cold, but was exacerbated by whatever it is in the air at the moment that is making the whole of East Texas cough. Of course, any time anything is floating around and making anybody snotty, Dakin is affected by it three times worse.

Sooooo...that being said, I think we are finally on the upswing. He did spend some time off the oxygen today, and Volcano Nose did not reappear. We will see from here. When he can finally come off the oxygen, we can start lowering his ventilator settings, but there will be no coming off the O2 until the snot issue has cleared up. I am hoping that tonight might help: we are supposedly getting 1-2 inches of snow and hopefully that will wash out whatever is in the air. Fingers crossed.

Thank you all so much for your prayers. We are truly grateful!!

Patience is a Virtue

Found rarely in humans, and never in a duck. We grew up quoting that line...it's from a Looney Tunes show.

I am evidently a duck. I want Dakin to be fully over this cold and back to his old self. BUT:

Fact: It takes people a while to get over being sick
Fact: Dakin has a neuromuscular disease with major respiratory involvement
Fact: It's a little harder for those with the aforementioned disease to recover as quickly.

SO: hurry up and wait. But I hate waiting.

ANYWAY. For your reading pleasure, a Conversations with Dakin piece:

Dakin: (Upon overhearing me say that night nurse Denise might need to suction him when he got in bed) No eeuh (that is Dakinese for suction)! No eeuh Dakin! No eeuh Daddy. No eeuh Mommy. No eeuh Denise. No eeuh car game. No eeuh car.

He agreed to let me suction his light stick, but then reneged.

Blah

Well, 2011 so far has been...suck.

Dakin is still sick--no fevers but a TON of chest secretions that just. won't. come. out. We have managed to keep it in his upper lungs instead of it solidifying in the lower parts. Thank goodness for that.

I have now inherited the sickness, though. Gaaah. It's not too bad, but I can see why Dakin is miserable without Tylenol or Motrin--headache headache headache.

I am going to bed.