Monday, June 27, 2011

Random Dakinisms

Old McDonald had farm EIEIO and this farm he had a bedroom EIEIO with a mommy there mommy there color there color there Old McDonald had farm EIEO and this farm he had a blanket EIEIO with a lie down there lie down there Old McDonald had farm EIEIO and this farm he had a truck EIEIO with driving there driving there driving there old McDonald had farm EIEIO.

As you can see, Dakin has been really into songs lately. He learns them in a flash and likes to put his own little spin on them. Today's was "Puff the Magic Dragon."

The other night we were 'camping', which means we were in his room playing. I took the scarf that I had been using to play pirate off my head and hades it to Dakin. He gathered it around his little head and said, "Captain Dakin!"

That same night he said Big Dakin and I were 6 years old, his nurse Jane is 17 and his Speech Therapist is 18.

He is developing such a little personality. I love hearing what he is thinking!!

Story Time

Are you all not very excited to have gathered here to hear Dakin's story? Well, the wait is over. Here is his story, as told me me this morning:

Once upon a time, a little truck beat Big Jet. Big truck dancing. Bucket of toys.


The End.

Saturday, June 25, 2011

I Am Speed

Today we did something we have never done before. We took Dakin to the movies! He absolutely loves Cars, so we thought Cars 2 might be a good first time foray into the world of big screen cinema. I was really nervous about it for a few reasons: 1. I was anticipating one bajillion people there, 2. Movie theaters are not known for being particularly clean places, and 3. Dakin does NOT do well with loud noise.

But we thought we'd give it a shot. We told him where we were going, and he said "I so excited!" And he did wonderfully! In fact, he was the best behaved child in the theater. He laughed his way through the movie with his little 'ha ha' and didn't even throw a fit at the little Pixar lamp, which he HATES on the Cars DVD. He spent about 20 minutes on Daddy's lap partway through, but we didn't need to suction and there was no fussing about lying down. After we ate at Olive Garden, where he even ate some of the breadsticks and my salad.

All in all a successful, 'normal' day. It was really nice. And I apologize for the quality of this picture...it was taken on my cell phone and it was dark in there, of course. But if you peer closely, you can make out his ginormous smile.

Monday, June 20, 2011

Hmmm

Well, since summer has officially made its wilting presence known, we are playing hide inside. It is too freaking hot in this state. I love it here, love everything about it except for this time of year and the inevitable insects that come along with it. Sigh.

Anyhoo, on that note we haven't done too much lately, but have had a lot of changes. Probably the biggest one has been in Dakin's eating...you may remember that last time we went to vent clinic they said he hadn't gained enough weight, which I attributed to the fact spring had hit and he was all stuffed up and couldn't breathe all that well to eat also. Well, all that has changed and due to the boosting they told us to do (in the form of heavy cream in his yogurt, etc.)and the fact that he resumed eating normally, the pig-boy has gained three pounds in the last 2.5 months. For example. Yesterday, he ate thirty ounces of yogurt, an easy mac cup, 4 ounces of Carnation Instant Breakfast in his milk AND like 9 ounces of water. I don't know where he is putting it.

But with that increased eating we have started trying to branch out on the foods he eats. So today, we tried a quesadilla...he ate an entire quarter of it! Doesn't seem like much, but for a kid who they said might have to do inpatient feeding programs or (SHUDDER AND QUAKE) replace the nose feeding tube (OVER MY COLD, DEAD CORPSE), this is a big accomplishment. BOO YAH.

Let's see, what else? We finally got the right seating system for Dakin's powerchair...maybe he can actually use it now. And yesterday we found a big freaking hole in his trach. So we need a new one. Good times. I told you nothing was going on.


But, for your enjoyment, a picture. I took this in front of the garden I was helped plant, grow and was entrusted with when the owners went away. It's all big and overgrown now and partially dying in this hellish heat, but it produced enough okra, beans, tomatoes, freaking zucchini and pumpkins to feed a small ex-Soviet bloc country.

Wednesday, June 15, 2011

Climb For Silas


You might be wondering who this handsome fella is. Well, his name is Gus, and he is amazing. His mother works for the Jackson Laboratory, the lab with whom we have been working to fund SMARD research. Upon hearing about Dakin's buddy Silas, Gus decided that he wanted to do something to help.

You see, Gus is a mountain climber. He loves it. And he is turning that passion into a cause...Climb for Silas. In the month of July, Gus will be climbing TWENTY FIVE mountains in Maine to raise money to help SMARD research at the Jackson Lab. Twenty five peaks he will summit to get us closer to a cure.

He went climbing the other day and took Dakin and Silas along, as you can see from the pics above (the last is Gus' pirate face for Dakin!). He had wanted to go the day before, but weather prevented a climb that day. This is what he emailed to Dakin:

Dear Dakin,
I could not bring you to the top of the mountain today because we got rained out.
But tomorrow we will be hiking another mountain called Norumbega Mountain. It has a very steep trail called Goat Trail and you get to see a few ponds. I will send you pictures tomorrow.
From Gus aka SMARD hiker


Gus is not just taking Dakin and Silas to the top of the mountain. His compassion and determination are taking us all there. With buddies like him, SMARD has no chance.

If you are interested in supporting Gus' Climb for Silas-Make SMARD Take a Hike, please let me know and I can put in you in contact with The Lab. 100% of all donations go to SMARD research at the Jackson Laboratory.

Friday, June 10, 2011

Brynlee

If you are at all involved in the SMA world, you know sweet Brynlee passed away this week. Beautiful, vibrant Brynlee. Her journey was one of the first we began following when Dakin was first diagnosed with SMARD, almost three years ago. I remember watching videos of her sitting up and learning of all the neat things she was doing. She was just a little older than Dakin.

Instead of a funeral, Brynlee's parents will be holding a ball in her honor. I think that is a perfect, deeply touching tribute for a perfect, deeply touching princess of a girl.

I wish I had words to help erase the pain Brynlee's parents and family are feeling. I wish I had a window to whatever follows this life so I could show them and in some way ease the hurt. It is at times like this that I feel the most powerless against this form of disease...I wish that in hating it I could somehow make it stop its destruction. That it had some kind of soul so I could maybe somehow make it stop by pleading with it, or threatening it.

Despite what it does to the body, SMA never touched Brynlee's spirit. Of that I am certain.

Fly, sweet Brynlee. Hope to see you in the sky, butterfly.


Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love

Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this

Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me

Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light.

-Celine Dion, 'Fly'

Monday, June 6, 2011

Lately And Listening

Yesterday was an interesting day. We took Dakin to church where he did great until the first part of the third hour...which is the childrens' meeting singing time. I had Dakin placed near the piano so I could see him, since I am the pianist (I use that term loosely). He started complaining that he needed to be suctioned, so I took him out. I didn't feel anything in his chest and took him back in. He kept fussing and fussing until I asked him if he wanted to go home, to which he said yes. So I take him out to the van and he started throwing a fit, saying he wanted to go back in. We walked him around the church for a bit and then headed home. I had told him he was going to get a surprise, but when he started asking I told him no since he was being so silly in church and of course a massive fit ensued. After about 15 minutes of fit, I caved and told him if he would calm down he could have his surprise. When he did I asked why he didn't want to be in primary. He said, "mad" and I asked why. He said "song loud."


Well now I feel like a big jerk. He wanted to be at church, he just didn't want to be in singing time because he doesn't like the noise.

Of course.

So, he got his surprise, a teal matchbox car. And now we need to figure out what to do with him during singing time.

On a side note, we haven't had a night nurse the last two nights and tonight I got to sing Dakin to sleep. He is so sweet...he fell asleep wth his little teal car in his hand last night. It is such a true and tremendous privilege to be his mommy. He is funny and tenderhearted and sweet and silly. He is talking so much now...telling me little stories about his cars and Big Jet. Last night he was telling me "look out car! Big van coming!"

Friday, June 3, 2011

Major Step Forward

Yesterday I got some absolutely mind-blowing news. The Jackson Laboratory, with whom Lisa, Silas' mom, has been working so diligently to get SMARD research going, yesterday got an anonymous donation of TWENTY FIVE THOUSAND DOLLARS.

I will give you a second to pick your jaw up off the floor.

Yep, that's right. Twenty-five thousand dollars. Unbelievable.

So what does this mean? This is a serious jumpstart to the lab being able to hire a post doc to work exclusively on SMARD. It is twenty five thousand dollars closer to answers. Twenty five thousand dollars closer to getting rid of breathing machines and wheelchairs and suctioners. Twenty five thousand dollars closer to Dakin and his buddy Silas being able to meet and dig up worms and leave them in their pants pockets, and jump in the beauty of autumn leaves...

Twenty five thousand dollars closer to Presley and Maddison meeting up in Paris and getting hit on by French men, or taking a backpack tour of Europe...
Today, we are twenty five thousand dollars closer to hope.

So to our anonymous donor, whomever and wherever you might be, please please know how much your generosity means to me, to us as a community. Please know I will never forget it. There are not words sufficient to properly express how I feel for you adding to that little flame of hope. I wish to heaven I could repay you, but I hope this will do...

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