Sunday, October 31, 2010

Happy 3rd Birthday!

What a weekend!! From Friday morning it was run, run run. So here's the lowdown: Friday was orthopedic clinic. All was well and Dakin's scoliosis is 'not as bad as it looks.' So yay. We hurried home and got ready for...

A birthday party!! We held it at a local Rotary Club park, which is specifically set up for handicapped people. It's perfect--the tables are all longer on the ends, the playset can accomodate a wheelchair, etc. And as I had made a pact with the weather gods to have a sunny day (sorry, East Texas, as a result of that pact, I'm afraid some ugly weather is coming our way!) it was absolutely beautiful on Saturday. We decorated pumpkins and cupcakes and attempted to break Dakin's pinata--boy, that didn't go well. When he saw everyone beating his ghost with a bat he got really upset. So we broke the candy out of the bottom and the ghost is sitting here in my living room intact.

It went great, considering this is the first birthday party we have had with actual children. We had a great group of kids--dressed adorably in their costumes, but I didn't get permission to put up their pics, so you'll just have to imagine.

Saturday evening we had the Trunk or Treat at the church. Dakin and Mommy, who tried to do a Snooki pouf. Boy, was that a lot of hairspray.

And then today, Dakin's actual birthday. We went to church, relaxed, had dinner and cake, and opened presents. Dakin's cake was supposed to be the awesome pumpkin one from last year's Disney Family Fun magazine, but I ran out of time. So there you go. He knew it was a birthday cake, though, and said so very clearly.
He made out like a bandit, as usual. He got cars and a ton of markers and coloring books, as well as some clothes and toys. In this pic he's holding the Toodles from his Mickey Mouse Clubhouse playset.

So that was our weekend. I remember shortly after Dakin was suspected of having SMARD, we found another SMARD family whose kiddo had just turned three, and I remember feeling hope that we would get to that point. And here we are.
Dakin is not just surviving. He is literally thriving. He is joyful, full of life and love and happiness and attitude and kisses and music and light. I don't know if I can properly express how proud we are of him. Dakin, we love you more than words can say. You give so much more to us every day than we could ever give to you, and we thank you for it. You are our light, our inspiration, our reason for being and our reason for joy. So we hope you had the happiest of 3rd birthdays, and look forward to a million more.
We love you.

Wednesday, October 27, 2010

Costume Time!

Dakin the Imagination Mover! And a bit of hilarity, since that's how we roll...

I (read: me and my awesome friend Liz) made this costume. What do you think?

Saturday, October 23, 2010

I Need A Permit

Does anyone know how to get a permit to have pigs on your property? It seems my son has taken on some porcine traits and I don't want to get a fine.

No, really. Dakin ate THIRTY-NINE caloric ounces today, with the final total plus water coming to, like, fifty five. Piglet! I don't know where he's putting it all. I checked to see if it was dribbling out his ear, but it's not. So I obviously need a permit if I'm going to keep pigs in the city limits. was a great day. After he woke up from his nap, we played and snuggled on the couch for a while, and then took his new powerchair out for a spin. He really wanted to see the truck parked across the street, so he made his way over there. He did great driving--took himself all the way down to the end of the street and partway down the other. The other day he could only go a few inches! Major progress. We would have stayed out longer, but this huge storm complete with tornado warnings blew through, so we hurried home, turned on the Halloween lights and sat under the porch for a few minutes before it got going. Good stuff.

Monday, October 18, 2010


We came home from vent clinic/perfect pumpkin day to this:Can you see what this is? It's a RAMP.

Yep! A ramp. Which may seem like a small thing, but it's huge. See, Dakin's new power chair, which weights approximately 4,000 lbs, is--understandably--difficult to get up in the house over the threshhold. We had to put it at it's top speed and hope it didn't spin out and slam Dakin into the wall.

Well, the other day we had a carpenter at our house working on the new door we got put in. Upon seeing all the spare wood in the back yard, day nurse Jane asked if we could use some. The carpenter asked what for, and Jane showed him.

And a few days later, we have a ramp. No charge--a professional, perfect, sturdy ramp.

As I have said before, it never ceases to amaze me the lengths people will go to for Dakin. Thank you so much again, sweet carpenter! This ramp will make our lives so much easier!

Friday, October 15, 2010

Ma Mao

You know, sometimes the generosity that others have shown to Dakin just floors me. Total strangers have gone so far and above what they 'need' to do or 'should' do for him. It is constantly a source of amazement.

Take Ma Mao here (aka How Ma Mao--for those who don't speak Dakinese, that's Warehouse Mouse from Imagination Movers). I had wanted to get Dakin a Ma Mao for a while, but they're not currently being sold, and the only one I could find was 35.00 on eBay. So in steps Day Nurse Jane's sister--I won't say her name since I didn't ask her if I could, in case you're wondering...

She is a maven of all things involving sewing (she made Dakin a beautiful blanket a year or so ago--don't know why I never blogged about that!!), and so she offered to make Dakin a Ma Mao. Her granddaughter insisted on watching an episode right away so they would be sure to get him right. And here he is.

Isn't he great?! Dakin LOVES him. He is so perfect--fluffy, soft and squeezable. Thank you so so much, Jane's sister, for putting in so much time and effort to create something for our little boy to love. It really means so much to us.
(And he's going to go perfectly with Dakin's Halloween costume...but more on that later!!)

Tuesday, October 12, 2010

The Pumpkin Patch, Perfectly

So Pumpkin Patches are usually a no-go for us...for a few reasons. The hay ride, the fields, the dust, the mud, etc. The last two years we went to churches that had pumpkins strewn about--which was great, mind you--but this year beat all. By maybe a bijillion. Today while waiting to go to vent clinic, we went to the Dallas Arboretum. Amazing is an adjective I use a lot, but it's the only word that describes this place. It was picture perfect for Dakin--more pumpkins than I have ever seen in my life, all over the place.

They even had houses made of pumpkins, as you can see.

Dakin got to color a picture at the craft table, but I couldn't work up the courage to let him get his face painted.

The pathways were lined with pumpkins...
And then there was this: the picture doesn't do it justice. A beautiful pathway to the frog fountain!
This place is magical. The weather was perfect, the pumpkins vibrantly orange and green and red, and most of all, Dakin loved it. It was all the perfection of a pumpkin patch without the concerns. Perfect.
And guess what we found? Tee hee...this is where we ate lunch.

Vent clinic went fantastically, as usual. Dakin gained a TON of weight, so our strategy for upping the pressure support on his vent is obviously working. He got his flu shot, but everyone please keep your fingers crossed that he will be able to get his RSV shots this year. With the double whammy of ventilator/trach and neuromuscular disease, he might be able to get them.
What a great day.

Sunday, October 10, 2010


It's 10-10-10. I have to blog today, right? Too cool of a day to waste. So I thought I'd talk about some of my favorite Dakin-isms from this week.

Firstly, he has decided he's in love with Lucy from Peanuts. We've watched "It's the Great Pumpkin, Charlie Brown" at least 4 times this week. He just wants to see's cute. Though she's horrible (and we have had that discussion with him) there's just no stopping the love for "Lulee." In this pic he has her mask on his head (it's a vinyl sticker from his book version of The Great Pumpkin).
of course, as I was trying to take this picture, he was attempting to pull the sticker off after he had placed it there so nicely...

Secondly, he's discovered he can whisper. Today in church he was being his loud self and I was trying to shoosh him, so he started whispering--very cute. That was just while the Sacrament was being passed, though. After, he went right back to being loud.

Let's see...what else? We went to a local craft fair on Thursday, and the Kiwanis had a giant (I mean massive) black Newfoundland walking around on his leash. Dakin of course fell in love with him (his name is Rico). As we stood talking to Rico's owner, Jane (our day nurse) asked the owner what kind of a dog he was. Without hesitation, Dakin piped in and said "black." Well duh, Jane.

Dakin's been learning the 'weirder' colors--lavender, sky blue, olive green. He likes to tell me what kind of color it is after naming it. Ex: He'll say 'lalaba, ty purpa.' (Lavender, type of purple). Well, the other day he had a plain purple marker in his hand and said, 'purpa. Ty purpa.' Yes Dakin. Purple is a type of purple.

We've just been up to a ton of stuff this week. Mud Hut and the library (his favorite place besides Walmart) for storytime, the park for playgroup and the craft fair. I got to take him with me to the library and Walmart again yesterday, as well as Hobby Lobby. With all this newfound freedom, I am reaaaaaaaaaaaaaaaally going to hate going on lockdown... :(

Friday, October 8, 2010

Double Fisted

Dakin had to take his olive green and green today on our walk. He clung to them tightly the whole time we were out!

Thursday, October 7, 2010


Oh yes. It's that time of year again. I don't know if I should be embarrassed to tell you we have actually been decorated for Halloween since Sept. 27th. It's the most wonderful time...of the year...(insert music notes).
And this picture is just because. See? Dakin's happy it's Halloween too.

Tuesday, October 5, 2010

Here Comes the Sun

Dakin was drawing on his whiteboard tonight, and all of a sudden looks at me and says, "sun." And here it is. See it? The circle with the dots around it. That's a sun. My child is amazing.