Thursday, April 29, 2010

I have no idea what caused this face. This is the one I'm used to.
Here's the 'Poker Face' video. Enjoy.

video

Thursday, April 22, 2010

Perfect Day

Today we made the 2.5 hour drive to Dallas to see the neurologist. Of course, once Dakin realized where we were, the freakout session started. Ah well. But he fortunately eventually calmed down and charmed the PA, who seemed to be surprised on how well he is doing. It was nice to hear it from her. :)

It was a very short appointment, though, and since it was so short we decided on a whim to visit the BODIES exhibit in downtown Dallas. I have been wanting to go for a while, and it was unbelievable. Just to see the beautiful, majestic bodies with their muscles and nerves and bones and everything else...wow. As you can probably guess, Dakin wasn't horribly interested, but he didn't fuss. He did find a girlfriend though, near the skull with the veins highlighted.

After we checked out a restaurant, and Dakin checked out everyone around him. On the way home he fell asleep for about 10 minutes and then was up and ready to go again. He was in such a good mood the entire drive, which is a huge blessing, since he can get miserable on it.

So just a review of today. It was a perfect day...and completely unplanned. We have gotten to a point with Dakin that we can really take him out a lot more than we used to, and in a more spontaneous manner. It is so nice to just live like a normal person sometimes.

And then tonight...I was singing 'Poker Face' and Dakin decided he was going to as well. I will get video and post it--it's hilarious!

Tuesday, April 20, 2010

Dakin is Everywhere!

We have had some amazing things going on! Firstly, I got an email today saying that Dakin was put on the front page of the Littlest Heroes Project's website! For those of you whe are new, the Littlest Heroes Project is an amazing group of photographers who have chosen to dedicate part of their time in helping special needs kiddos--you can get a complimentary photo shoot. We did it last year and it was AMAZING. Our photographer, Brandi, was absolutely wonderful with Dakin. Go check it out!!

I haven't posted about this just yet, but this semester we have been working with LeTourneau University in Longview. We contacted them in the hopes that their engineering program might be able to help us learn to modify toys for Dakin. Well, they took it a mile further: a group from one of their high level classes chose us to modify a remote control car for Dakin. We had one of the group members out here the other day, and he brought the car--and Dakin LOVES it. This is big--Dakin usually gets bored with toys because he can't play with them independently. Not this car--he wanted to keep playing and playing with it. I have pics, but I'm not going to post them just yet, because that's not the point of this post!

What is then? Well, I got an email from the engineering professor we have been working with today. He let us know that the local news and newspaper were out at the school to cover the 1st year engineering students, who, on inspiration from Dakin, have learned to modify remote controls for special needs kids!!! And what's more, they will be posting a how-to online, so we can all learn too!! Check out the story!

Working with LeTourneau has been a wonderful experience, and I am so glad that Dakin has been an inspiration for these students. I can't wait to post the final version of the RC car--YAY!!

Monday, April 19, 2010

Blast From the Past #2

Just for reminders: I'm moving stuff from my old blog to this one, and this was the first post from the old blog--a tester. I love this picture anyway....so it's good that it's here too.
In the process of moving the next video over, I found this one, which is beyond cute. This is from right after Dakin was trached. See how happy he was? LOVE IT.

video

And this is the one I wanted to move over. Raspberries! This one is from the rehab hospital. video

Tuesday, April 13, 2010

In a word: Amazing

On Saturday while flipping through the TV listings, we happened upon the highlights of the 2010 Paralympic Winter games. I wrote about this previously, and had wanted to see the games, so I was thrilled to get to see some of it.

Wow.

That's really the only word I have to describe it. I spent most of the time watching not really trusting myself to speak, since I had such a big lump in my throat. We got to see athletes with only 10% of their sight hurtle down a mountain in the skiing events. We saw a man, born with no arms, compete in an event that required him to cross country ski and shoot at a target--with his specially modified gun. We learned the story of a woman who is now a medalist in both the summer and winter paralympic games--at the age of 17 she was in an accident (I can't remember exactly what happened) and is now in a wheelchair, but she plays paralympic basketball and is a gold medal downhill skiier. We watched the US sledge hockey team take the gold, moving around the ice in sleds with blades on the bottom.

Amazing.

It is beyond lamentable that these games didn't get more coverage, or even at a prime time. I am at a loss to explain how a person who is sighted who skiis down a hill at top speeds is somehow better or more worthy of admiration than someone who CAN'T SEE doing the same.

I could go into a whole rant about this, but that's not the point of this post. The point is the astonishing example these people set. I made Dakin watch it (though he fell asleep during the hockey game :) ), and I hope that some part of him remembers. I really hope that he keeps these atheletes in mind: people who choose to not let their disabilities define them.

People who were obviously never told that visually impaired people shouldn't throw themselves down a mountain on a pair of skiis--and if they were, they didn't listen. People who, after having suffered life-altering accidents, picked up a pair of sledge hockey sticks instead of a bottle. People who would, by all rights, have every excuse in the world to completely shut down and feel sorry for themselves.

Not these atheletes. I am still in wonder, and am emotional all over again about this. I hope beyond everything that I have the kind of chutzpah it takes to raise a child with disabilities and teach him that he is NOT the sum total of his wheelchair or his ventilator--that he CAN do these types of things, and with courage, beauty and grace.

I can't wait until the summer paralympics. The other countries better start training now: Dakin is coming.

Friday, April 9, 2010

Couldn't Be Prouder

Today was Dakin's 2 year anniversary of getting released from the hospital. He has only been back once, (I've mentioned before that the other stay was 3 days and because he had MRSA and wouldn't even have been hospitalized except that people in East Texas freak out when they see a vent baby) and that wasn't even for a respiratory issue, so it SO DOESN'T COUNT. :)

So we celebrated. We called up Red Lobster and made arrangements for a table with room for his chair (thanks again, Red Lobster) and we went and had dinner. Dakin was fascinated with everything around him: the cowboys who walked in, the baby at the next table, the man using that little vacuum thing. He ate crumbs of various things, but he enjoyed himself. It was the first time we've taken him to a restaurant at a peak time, and it went really well.

We even decided to try a trip to Target. That was almost sensory overload!

Anyhoo, just wanted to let you all know. He has come so far in two years, and we couldn't be prouder of him. Dakin is so joyful, so happy, and day in and day out chooses to defy this disease. We are beyond fortunate to have him as a son, and we learn from him every day.

We love you, bucket!!!

Wednesday, April 7, 2010

Whoops

Better late than never, I give you: the annual church egg hunt.

Dakin was of course thrilled with the first activity.
He still hasn't caught on quite yet to the concept of the egg hunt. Oh well...next year. And here he is...just as thrilled as he was last year. LOL. Oh well. We all enjoyed it, anyway. :)

Monday, April 5, 2010

Easter

Well, this would have been posted earlier, but nurseless-ness has apparently somehow rendered me incapable of blogging. Also I was lazy yesterday, and I couldn't get the darn photos to upload.

Excuses finally aside, here it is! Dakin, not being a candy eater, got removable tattoos in his eggs, which were shaped like sea animals. He didn't care too much about the tattoos (though he LOVED them the last time he had any...blurgh), but he did get pretty excited about his new markers!
Look at this vertical left-arm movement!!

Egg-dyeing. We did it homemade this year, and while the purple didn't turn out looking anything like purple, the yellow and green were great!Cheesing with dada.
It was a good Easter. We got to enjoy being at home and together. Easter isn't, to me, a big 'celebration' type holiday, like Christmas is, you know? But I am immensely grateful for what Easter signifies: the empty tomb on that morning proclaiming that this life is not the last. That knowledge has come to mean so much more to me in the last two years than it ever did before, and I am so grateful.
I have had this little Primary song swimming around in my head and I thought I'd share. It's by Mabel Jones Gabbott and Royce Campbell Twitchell.
Did Jesus Really Live Again?


Did Jesus really live again?
Yes, when the third day came,
He wakened and he left the tomb;
He called Mary’s name.
Did Jesus come to those he loved?
Yes, people touched his feet,
And of the fish and honeycomb
He did truly eat.
And there were nail-prints in his hands
And a spear wound in his side.
Did Jesus really live again
After he had died?
Oh yes! And so shall I!

So grateful.

Friday, April 2, 2010

Back to the Drawing Board

Again. We had (notice my past tense usage of the verb) a new night nurse. We trained her on Wednesday with our wonderful other night nurse, and last night she was set to work. So she comes in, I keep an eye on proceedings and settle into the recliner in the living room so I can hear if she or Dakin need help. All appears to be going well.

Until 3:30 am.

I wake up, put down the footrest on the recliner, and go to check on Dakin. I walk in his room, and she's asleep. Well, it's not the first time I have seen that, so I make some noise, thinking maybe she just had her eyes closed. I emptied the water trap, moved the circuit around. No good.

I go over to her and whisper her name. Twice. Finally I give up and shake her arm. That rouses her, but not a word of, "Oh, I am so sorry!!" or anything of that nature.

I try to let it go, 'cuz I'm on this new 'trying not to get too bent out of shape' kick. I did stay up until 5 or so trying to catch her at it again.

This morning I approached her about it. Her excuse was, "Oh, I must have dozed off." I let her know in no uncertain terms that if I had to shake her awake, she had not 'dozed off,' she was dead asleep. Still no apology.

SERIOUSLY? You are at my home to prevent my child from dying, and you FALL ASLEEP?!?! On the FREAKING FIRST NIGHT OF YOUR JOB!?!?!! My child's life depends on your vigilance and you can't keep your #$&^#*&$ing eyes open?!

So I bounced her. Idiot. Some people have no business being nurses, and I swear every last one of them has at one time or another passed through my door. Fortunately they out themselves quickly and I give 'em the boot.

She's lucky I didn't cuss her out. I suppose today the blog is my venting board...sorry.

Back to the 'ol drawin' board.