Tuesday, June 29, 2010

Sunday, June 27, 2010

Powerchair Progress

What are they doing to this poor child? They're fitting him for a molded seat for his power chair, that's what!! If you remember, our journey with the power chair began in October, when we got his loaner to try out. The paperwork was submitted in December, and was FINALLY approved a few weeks ago (there were some issues with our insurance and then we had to jump through some Medicaid hoops).

On Thursday the wheelchair people came out and got the seat aspect of it going. They sat him on these beanbags and the two PTs wrestled with him to get his spine as straight as possible. Then they sucked the air out, chalked up the form and recorded it in a laptop. It was emailed to the company and we will have a mockup hopefully in 2 weeks. If all goes according to plan, we will have Dakin's chair at the end of July!!

He finally decided he wants a nice cherry red on the frame (Dada says it's a hot rod red :) ).

Saturday, June 26, 2010


(Well, I guess it took me a little less time than I thought to figure out this new computer. Hooray!)

So on Friday we had a wonderful morning. Our day nurse, Jane, asked her friends if we could bring Dakin berry picking at their beautiful home. They agreed, and we headed out, despite the 85 degree (and ten thousand percent humidity) heat at 8:30 in the morning. We had a wonderful time--Dakin got to pick some berries, as well as feed a deer (we didn't get a shot of that, darn it!!) and pat a huge friendly dog. It was a morning of firsts, and we thoroughly enjoyed it!This is Bo. Dakin was so entranced with him...he wasn't spooked by the ventilator as other animals (those tigers...eek!) have been. Dakin watched him wherever he went. Bo even came and sat by him. According to Jane, (I didn't see it, since I was busy picking) Dakin reached his foot up and touched Bo. Bo turned around to look at him, and Dakin dropped his foot. Bo turned away, evidently unperturbed by this boy patting him with his foot, and Dakin touched him again with his little foot. He was such a gentle dog, and it was a great experience for Dakin, since he loves dogs but has only been close to one other one. All in all, despite the sweat, it was a great morning. You know how sometimes you just get one of those days? Friday was ours.

We're Live!

Thanks to PawPaw and Grandma Debbie, we are once again online (thanks, guys!!!).

It has been an eventful two weeks, and I have tons to blog about, but for the moment I will be attempting to find the disk that will allow me to upload my photos and adjusting to this funky new keyboard--I am experiencing major typos with this one.

Back soon!!

Monday, June 14, 2010

A (sort of) Hiatus

I am typing this from my friend Nichole's house because last night our computer exploded. There was smoke and everything. So until we can remedy that situation, I will be posting less often...just wanted to let you know so no one freaked out. :)

Thursday, June 10, 2010


Dakin is back on the O2. At least for a little while after he falls asleep--he just takes a nose dive the second he does. So I call up the pulmonologist, and they say, ok, it sounds like it might be a trach issue, so call up the ENT. I call up the ENT, and the nurse tells me they think it's pulmonary. Um, no, if it were pulmonary, I would have been able to solve the problem by myself by now.

So I made an appointment to see the ENT the same day we have vent clinic. We will figure this out.

(The ENT nurse was way rude to me too...like I have no idea what I'm talking about. I am glad the docs don't talk to me like that. There would be issues. Grrrr.)

Monday, June 7, 2010

It Has Begun

And I'm having mixed feelings about it...lol.

Tonight we were watching 'Lie to Me' when Mekhi Phifer's (did I spell that right? I'm lame) character answered a question with a "hell yeah."

All of a sudden a little voice from the floor: "a yeah." I thought that little voice wasn't paying any attention to the TV. Wrong. Dada and I of course were trying to mask our laughter so as not to encourage the little voice.

So he's become a mynah bird. I have been looking forward to this--I mean, he's been doing it for a little bit, but not with the the shows we watch in the evening, just his shows. Fortunately, I have always been really picky about what we'll watch when he's awake, but I guess we just have to be more so now. It's GREAT, because it means his speech is improving. Of course, the down side is I have to watch what we say now...lol.

So I guess I'm happy. I'm glad to have to watch what I say/watch for fear a little ear will hear and repeat.

Saturday, June 5, 2010

Spring Project Complete!

Dakin got a butterfly garden as a gift from one of our dear friends, and so as a spring project, we decided to use it! We ordered our caterpillars, which you can see (kind of) here--they're hanging from the top of the cup.
Once they cocooned themselves, we transferred them to their house! They hatched and we kept them for a few days before we let them go. Dakin enjoyed watching them. (The red and white thing on the side is the top of the cup--there were still cocoons attached to it, so I couldn't move it. The red stuff, strangely enough, is meconium. The little white balls in the bottom were nectar soaked paper towels to feed them.)
I was hoping to get some enchanting pictures of Dakin holding them, but he evidently did not inherit my butterfly magnetism. They just wouldn't stay on him. Aren't they beautiful? These are Painted Lady butterflies. We had 8 in total, and released the last one--who hatched about 3 days after the last ones were already out in the world--in honor of our little SMARD friend in England who passed away in May. Couldn't think of a better way to honor her.

Thursday, June 3, 2010

Sorry Aunt Sharon!

Dada's sister Sharon came to visit a while ago-before Aunt Carla came, actually. For some reason, I never got around to blogging about it, so here she is! We loved having you, Sharon!