Deciphering Dakin

For the uninitiated...here's a brief Dakinese dictionary.

la la --color or yellow, depending on context

bow--brown or blue, depending on context

mimi--Minnie

mow--mouse

deedee-Daisy

daaa-duck

ra ra--rocket

eeee--green or please, depending on context

gay--gray

pa paaaa--purple

peesh--peach

yeah yeah--yeah/yes

ah dah--hot dog

uh oh--uh oh

oh no--oh no

ba baaa--butterfly

weird gagging noise--I need to be suctioned

chomping jaws--I want to eat or someone else is eating

looking at someone's shoulder--I want you to hold me

ipee--yipee

pih--pink

vrrm vrrm--motor vehicle or I want to get in my chair, depending on context

da da

ma ma

daaah/oof oof--dog

mow--cat

moo with funny cow face-cow

baaa--sheep

kisses--sorry, or, if combined with the sign language gesture for thank you, thank you. It can also just be kisses

There you go...that's all I can think of at the moment. He's also started with a 'yo-e yo-e yo-e' whose meaning has not as of yet been determined.

Thank you all for your well wishes. Dakin hasn't been on 02 the last two nights--keep you fingers crossed! It really is just looking like a case of overexertion/overstimulation.

Too Much Too Soon

That's what I think, anyway. Dakin has, for the last few weeks, had to be on oxygen during the night. This is extremely unusual for him, as his oxygen levels are usually 99-100% all night, every night. I have been getting worried about this, as it can be an indication of some rather unpleasant things--namely, Dakin being sick.

Well, he's not sick. There are no signs or symptoms of illness. He's perfectly normal during the day, and then when he falls asleep, his sats take a nose dive.

So what's going on? That's what we're trying to figure out. I have a few theories:

• The trach: Dakin may need a bigger one. When he falls asleep he just relaxes so much that his leak is too much to keep his sats up.
• The usual suspect: the weather. We are transitioning into summer, and it's been dry as a bone around here.
• The one I don't want to consider: He's getting weaker. This, though, seems unlikely, as he needs no extra help while he's awake, and he's not even on O2 all night long.
• The more likely: We have been nothing but go go go the last few weeks since we got our van, and he's tired. I think this is a possibility, since for the last two years, we haven't really gone anywhere, due to lack of car and difficulty in moving Dakin. With the van, it's easy peasy to move him, and we have been taking advantage of it. As much as Dakin acts like there's nothing different about him, he does have some physical limitations. I think going out so much is too much for him--as I said, too much too soon. Too much sensory overload for a child who has spent his entire life in our living room--though obviously not for lack of wanting to expose him to the whole world, just by virtue of the fact it has been too dangerous/difficult to have him out.

So Nurse Jane and I decided to scale back the going out and we'll see what happens. Keep your fingers crossed.

Spencer's Birthday

Last week Dakin was invited to his very first birthday party! It was for Spencer, the son of our across the street neighbors and dear friends. We have come to love Spencer--he is a sweet boy and we are glad to have got to go. Nichole, Spencer's mom, told me that as they were choosing a location for the party, one of the utmost concerns was making sure Dakin could come and that there were swings available for him to swing in. Evidently Spencer was very excited to get to swing with Dakin...and here they are.
We had a blast, despite the heat and humidity. Dakin got to color a pinata bag, pretend to drink from a Capri Sun, watch Spencer open his presents, and hit a Hulk-themed pinata. He LOVED that.
Happy 4th birthday, Spencer! We love you!!

Ella

Hi all. Many of you may already know this, but our sweet little friend Ella has been diagnosed with Leukemia. We are asking for your prayers for her and her family as she battles this disease. We love you, Ella!!

Aunt Carla

So I have kind of fallen off the blogger wagon recently. I don't know why...we have just been busy, I suppose. I haven't even blogged about Aunt Sharon's visit a few weeks ago (I'm sorry, Sharon!!!!), but I thought I'd start trying to redeem myself by at least blogging about Aunt Carla's visit the other day. Aunt Carla is Dada's sister, and we loved having her here! Here are some pics--no, Dakin's eye is not bruised--he managed to color all over himself again--shocker. In the middle one I had noticed it and wiped it off!!

Wordful Wednesday

Catching up on recent photos! Fingerpainting!

He was loving this, can't you tell?

Dakin's New Toy

Here it is! It's a remote control car, specially modified just for Dakin. You may remember a bit ago that I had contacted a local university about modifying toys. What I was hoping for was maybe a student engineer organization who might modify one of his Elmos--what I got was SO much better. One of the engineering professors contacted me personally and asked if we could be included as part of one of their upper-level classes--a class that takes an existing product and makes it better for usage.

One of the groups chose us to work with and came out to evaluate Dakin's needs. They wanted to do a remote control car for him--one he could actually use. And the above is the result--a red and yellow all-terrain piece of freedom for my little boy.

They modified the controls to make it a two-swticher--forwards and backwards. It was rigged for the lightest touch, so all Dakin has to do is press lightly and he can make it work. He figured it out right away, and made the car go all over the lawn and on the street.

Dakin can't really lift his arms while sitting up, which, as you can imagine, severly limits his playing while in his wheelchair. The control solves that problem. He can--finally--play independently in his chair. He LOVES this car. He never gets upset at me taking toys when we're done with them, but he got very upset last night when the battery ran down. It was nice to see--not the upset part, but the fact he was so engrossed with a toy that he was mad he couldn't play with it right then.

We had scoured the internet and toy stores at Christmas to see if we could find a RC car he could play with. There was nothing. You can buy RC switch-adapted cars, but they're nothing like this, and they can't afford the back and forth that this one does.

Anyway...thank you again LeTourneau engineering department for caring about my little boy. Thank you for giving him an opportunity to play like other children. It's a blessing that I can't even begin to elucidate on.

*I wanted to upload a photo of him playing with the switch, but my stupid internet won't let me!!

Toddlerhood is wonderful

I am absolutely reveling in how entrenched Dakin is in being a toddler. Over the last few weeks he has really embraced it--(mini) tantrums and all. Here's a few examples:

1. He has taken to echoing what people say. Tonight, we were watching Iron Chef and I said 'eyeball', and of course he picked up on the word 'ball' and started saying it (really more of a 'bow', but we know what he means). He even got an 'eyeball' (mostly) out. I said 'yippee' the other day and he has been enthralled with that--"Mama? Ipee." It's his new favorite word.

2. Along those same lines, he is saying 'ow.' If someone says 'ouch' he will start in with 'ow'--the funnier part of it is when he's watching Dada play his racing game. If Dada flips the car on the screen Dakin declares 'ow.' It's pretty amusing.

3. He is into everything, as much as he can be. If I put something even remotely near him, he's trying to get it.

4. Of course, he's still all in with 'ma ma ma ma ma ma ma ma ma ma ma'. All day.

5. He will throw minor tantrums when he doesn't get his way.

Anyhoo...just what I was thinking about tonight. I am so grateful I get to watch Dakin be a toddler. It is truly a joy to watch.