Naptime

What can I say? This boy loves his markers!

Sooo...

I have reconsidered my idea about placing Dakin in public school. I am really feeling now that I need to homeschool him, at least for now.

Here in Texas, Dakin would qualify for services through the local school district here in a few weeks when he turns three. We had decided to wait on the program a year for germ concerns and were going to stick him in next year, buuuuuut...

Nope. I'm going to homeschool. And here are my reasons:

1. Germs.
2. Germs.
3. I am a product of a mother who worked in the public school system for nearly three decades, and I have worked in it myself. She saw appalling things happen to the 'special needs' kids. So did I. I won't have it. Anyone that spends any time with Dakin can see that he is clearly intelligent, but due to his physical limitations he will be considered special needs. I will NOT have him labeled, placed in box and left there (it happens!!!). Won't do it. Saw it happen, and I won't. No no no.
4. Germs.
5. Dakin, at not even three, can count (he got all the way to 29 the other day!), knows his letters, all his colors, shapes and animals. Even the weird ones. I don't want him sitting in a pre-K class wondering why he's the most advanced kid in the room. Bored kids cause trouble.
6. I just feel good about it.
7. I forgot to mention germs.

Now, don't get me wrong. I am a graduate of the public school system. I got an amazing education. If Dakin were running around like other kids, this would not even be a question. He would be in public school. But I think, considering everything, this is best for him right now. If in a few years he decides he wants to be in public school, I will put him in.

I'm actually really looking forward to it. I have a degree in education and have done a lot in curriculum planning, so I know I have my work cut out for me. Starting up next fall!! Wish me luck!

If You Give Dakin a Marker...

You end up with this:
Our OT extraordinaire came up with the idea of using his old IV pole to rig up a thingy that would enable him to lift his arms. He loves it! Unfortunately, he has decided to use this newfound ability for evil and proceeded to color all over his face today.
This pic isn't great, but it more or less shows the setup. And yes, that is a skeleton mat in the back...I'm a little early--don't judge me.

Oh, and he was such a pill as he was coloring on himself. I told him multiple times to quit and made him say sorry. One time I turned around right after he had just barely gotten done saying sorry, and he was at it again, with a big old smile on his face--as if to say, "neener neener."

Only six more weeks of the terrible twos...they're lovely and well-behaved at three, right?!

*edited to add (thanks, Dana!) that despite my griping, I am thrilled that he can color all over himself. It is truly a blessing. And in the midst of scolding him, I was trying my best not to laugh. It was a precious moment.

Finally

I have a really bad habit of telling you all I'm going to post something, and then never doing so. But this is important! Behold: the power chair!So I know he doesn't look thrilled about it, but he really does like it. (He calls it the 'new brrm'--the stroller is the 'old brrm'.) It needs a bit of adjusting--as you can see, he's leaning. It's a far better supportive chair than the stroller is, so hopefully we'll be able to decelerate the scoliosis.

He is nervous about driving it for the moment, but he'll get there. This thing is all bells and whistles, so once he really gets going I'm going to be grateful it came with a remote kill switch! Video to follow once we have some good footage--I promise!

Summer's Last Hurrah

We got a new toy a few weeks back. Strangely, it just rolled into our yard. We left it outside for a day or so, but no one came looking for it, so we adopted it! Dakin LOVES this globe! (He can even say globe now.) He really enjoyed playing with it inside, and got mad when I took it back out to wait for its owner. We thought it was just a pool toy, and then we figured out it plugs into a hose and becomes a spray toy! We thought Dakin might enjoy playing in it, so we gave it a shot. He was pretty apprehensive, as you can see from these pics. He eventually warms up to it, but he's not super big on getting wet. He's getting better with it, though. I don't know if we'll get another play day with it, though since it's STILL 95 degrees here we should be able to use it well into, oh, January.

Super Fun

Yep. My idea of fun is a visit to the ER at 9 p.m.

(Actually, I am fairly certain that the ER at 9 p.m. is the lowest circle of hell...you know, where Satan lives.)

Anyhoo...I, in a bout of craziness, decided to take Dakin to the park yesterday. He wanted to go down the tube slide, and we ended up with what they are calling a strained hip. His legs naturally flail out, due to his extensor muscle strength, and I should have realized that his legs were out before we went down. But I couldn't see, since I was on my back, owing to the fact the freaking slide wasn't tall enough for me to sit with him in.

ANYWAY. So I thought maybe he had tweaked his knee, and he wasn't fussing about it too badly, so I decided to just watch it. Denise, our night nurse, thought perhaps he dislocated his hip, so off to the ER we went.

After much fussing and being upset and doctor flirting, we were sent home. He's fine today, but I'm glad we checked anyway.

Besides, I haven't been on vacation in a while, so I suppose the seventh circle of hell is a good enough spot to visit.

SMA Blog Party

This is Dakin. Behind these amazingly beautiful brown eyes and chunky cheeks lies an insidious disease. One that we never in a million years saw coming. One that lay dormant in our DNA and that through chance combinations of genes rendered this sweet boy unable to sit up, to walk, to even merely breathe. This is SMARD.

On the Daily Dakin, I try to focus on the positive--after all, if you spend all your time pining after the gold you 'should have' gotten, you tend to miss the silver lining. And I have much--so so much--to be thankful for.

But today I want to, just for a moment, concentrate on the reality of SMARD. To say it is hard to live with would be a gross understatement. Dakin has to have breathing treatments with a vest and medicine he hates. He has to be suctioned. He can't be off his ventilator for longer than 30 seconds. He gets water down his trach from his circuit that makes him choke and sputter. He can't get toys he wants or go pull the videos off the shelf. He can't throw dirt or unroll the toilet paper or color on the walls. He won't ever be able to sneak out or go down a water slide or do many of the millions of little things--things we take for granted--that make up a life.

Now that being said, Dakin has a wonderful life. He smiles. He laughs. He is happy. (Which is, after all, all that anyone can hope for in this life.) As much as is possible, he defies SMARD. He has it, but it most certainly does not have him.

But maybe, just maybe, we might be able to give him the chance to do some of those things he can't. Research is going forward. Advances are being made. And you can help. Here's how:

Go to www.voteforSMA.com and vote for the Gwendolyn Strong Foundation every day until the 29th. It's simple and takes just a moment, and they could win 20,000 for SMA research.

Join in our blog party. Post about the contest and your experience with SMA or SMARD. Even if you have none, you can post about Dakin if you like. He is pretty cute. :)

Thanks for letting me be serious for a moment. Levity scheduled to return soon. :)

Nifty

That's Dakin's new skill! He figured out today that he can hold his bottle (yes, he still eats out of a bottle...we're working on straw drinking. We're lucky he's eating by mouth at all, so...yeah.) all by himself!! Check it out! Unbelievable!! (This pic is upside down because it was taken that way...)

He tried it again tonight with his water bottle. The moment I gave it to him, he promptly threw it out of his crib.

(hee hee!!!!)

Piglet

So it's been a few days. Again. And again, I apologize. Things just haven't picked up around here lately yet--it's still too freaking hot.

The only thing that HAS picked up is the little one's eating! We figured out that if we up his pressure support on his ventilator to 18, he will eat a TON more. Well duh--he can get a bigger breath, and bigger breath=more willing to eat. ('Cause he can breathe and all.)

Today he sucked down something like 40 ounces worth of volume, and about 37 of caloric intake. HUGE! He's never eaten that much in a day!

I'm pretty excited. If current trends continue, I'm hoping that the next time we go to vent clinic they won't talk about how he's skinny, and the nutritionist won't find something to fuss about.

Anyhoo, starting next week we have some cool stuff going on. More then!

Daddy

Daddy recently mentioned to me that there's not much of him in this blog...so here he is! Dakin loves his daddy--loves making faces with him, laughing with him and just being with him.

*edited to add that Daddy just informed me "Wooh. Now they won't think you're a single mom." Ha!

No Pity, Please

You hear different things when you're a special needs parent. I hear a lot of "Oh." and "I'm sorry." Those ones I don't mind too much, but the one that really bugs me is "I feel sorry for him."

The last time someone said this to me, I said, "Don't. Dakin's happy as he can be."

And really, he is. I mean, what's to be pitied? Sure, he can't walk or breathe on his own, BUT:

He is surrounded by things intended to fire his imagination and spark his interest.
He is encircled by people who love him.
He has a warm, safe place to sleep.
He has healthy food (or as healthy as we can get him to eat, anyway. :) )
He is read to.
He is sung to.
He is cuddled when he cries.
He is spoken to in kind voices.
He has a mother who lives at his beck and call.
He has a father who plays with him.
He is taken to wonderful places, like the zoo, the library and Whole Foods (which is my idea of heaven!!)
He is included.
He is understood.
He has people who pray for him.
He has grandparents who adore him.
He gets to watch his favorite shows.
He is encouraged.
He is snuggled.
He lives in a clean home.
He is taught.
He wears clean clothes.
He regularly sees his doctors.
He is played with.
He laughs.
He smiles.
He has a sense of humor.
He has wonderful nurses.
He is safe in his home.
Those around him have Germ-X in the blood now from efforts to keep him healthy.
He has people who have sacrificed for him.
He has everything he needs.
He is laughed with.

And perhaps most importantly, he is deeply, fiercely and immensely loved.

I could go on and on and on. I don't think it's any secret that there are far, far too many children who don't have a tenth of the things Dakin does. So no need to feel sorry, shop check-out lady or waitress. Just look at his smile. It tells the whole tale.