Lovin' the Dakin

I have been thinking quite a lot lately about how much of a privilege it is to have Dakin in our lives. He is just such a ray of sunshine. So I thought I'd outline some of the things I love about him.

I love that he lights up when he sees me.

I love that he wakes up smiling in the morning.

I love that he says "da da" in his sleep.

I love his sweet face.

I love his dimple.

I love how he laughs hysterically at the silliest things with his little silent laugh.

I love that he loves butterflies.

I love how motivated he is to communicate--technically he shouldn't be able to talk over his trach, but evidently no one told him that.

I love his silly little personality.

I love that he spends the majority of his day smiling.

I love that a few seconds after being suctioned, he is all smiles again.

I love when he snuggles with me--he's like a little koala.

I love how he says "da da"--very loud and playfully, and "ma ma" he says quietly and sweetly.

I love (yes, I love it) how gosh dang stubborn he is. (And he gets it from no one strange--thanks grandma...lol)

I love that he tries to get people to look up by looking up. He thinks it's the funniest thing.

I love all the silly little noises he makes.

I love that he likes to crash into things in his stroller.

I love that he knows how cute he is and uses it to his advantage.

I love how smart he is. A little too smart.

I love how he loves to read.

I love that he laughs at things out of the blue.

I love that he likes to slide down my legs when he's snuggling with me, and that he tries to roll himself off my lap. It seems like a strange thing to love, but I think it's an attempt on his part to get the movement that a neurotypical child has. When he's trying to roll off my lap, at the last second will roll back and laugh at me, like he's testing his limits. I love that about him.

I love that he loves music.

I love that he likes to watch the news when he's eating in the morning.

I love that he loves FreeCreditReport.com and AARP commercials.

I love how quickly he learns new things.

I love (and am so grateful) that he is so patient during trach care.

I love that he likes to chew on empty saline bullets, his plastic hemostats, and his cuff on his trach. He's not really into any other toys that we give him, but he loves those.

I love how he sticks out his lower lip when he pouts.

I love that even after he gets a shot, he is quickly happy again. He is such a hero.

I love all the silly little movements he makes--his dancing, bouncing, kisses.

I love that he dances when music comes on. Except for Pink--he doesn't seem to like her too much.

I love his blond hair.

I love his brown eyes.

I love that he loves to stare out the window when we go out.

I love his interest in the world around him.

I love that he can make me laugh at any time.

Whew, I could go on and on. I think that's good for now. Dakin, I love you!

PS--the collage is from wonderful Brandy! (See previous post). My favorite is the top left hand corner, and the bottom right hand--that one cracks me up. It's so Dakin.

Not Quite Wordless Wednesday--The Littlest Heroes Project and Brandy

Clicking around on Kidz one day (thanks Tara!!), I stumbled across The Littlest Heroes Project. I was intrigued by the name, and so checked out the site. The Littlest Heroes Project is a nationwide group of photographers who volunteer to use their talents to photograph special needs as well as chronically and terminally ill children and their families. Having had a negative experience with photography studios (don't ask), I thought I might contact them about doing some photos of Dakin, since it's pretty hard for us to get to a studio. They sent the most wonderful photographer to our home: Brandy Vazquez, who is based in our area with her studio, bjane photography. Dakin took right to her, which I was shocked about, since he's had pretty bad stranger anxiety lately. She set up in our front room and started snapping away. These are a preview of the results:

Yeah. She took these in our LIVING ROOM. Brandy is so talented, and we cannot thank her enough for sharing that talent with us. I know that many of you can empathize with how hard it is to express gratitude for something like this: having a special needs child is (to put it mildly) difficult, and when people like Brandy and the Littlest Heroes group go out of their way to help us on our path it truly touches us. Thank you again so much!! You are amazing!!

(Isn't my kid cute?!?!?!?)

The SMA Treatment Acceleration Act

Hi all! I have noticed that we have gotten a lot of new traffic, and so I wanted to bring up a subject once more that is really really important to us: The Spinal Muscular Atrophy Treatment Acceleration Act. Spinal Muscular Atrophy is the number one genetic killer of children under age 2. One in forty people carry the gene that causes SMA. SMA is a tragic disease that leaves a child in a body that is unable to move, but does not affect the mind. Most children with SMA Type one will not live to see their 2nd birthday.

But there is HOPE--the National Institues of Health have chosen SMA as one of the neurological diseases closest to treatment and cure.

The SMA Treatment Acceleration Act is in support of making that treatment and cure reality. This landmark legislation--that already has bipartisan support--will help to unite SMA research programs and ultimately lead to treatment and a cure. We have come to know and love so many of these kiddos afflicted with 'regular' Spinal Muscular Atrophy--they are beautiful children whose lives will most likely be cut tragically short by a disease that is years, yes, YEARS away from a cure. Not decades, not centuries. YEARS. Just a few even.

This particular legislation will not only benefit SMA research, but a whole host of other neurological diseases as well--ALS, Tay Sachs, Fragile X. And most importantly for us, maybe Dakin's disorder (Spinal Muscular Atrophy with Respiratory Distress--SMARD)as well. This Act is so important to us because it is pretty much our only hope: no one that we are aware of is researching SMARD in the US. This is all we have.

This legislation will be reintroduced into Congress this year, but it needs more support. Bill and Victoria Strong, whom we have come to 'know' through blogging, are trying to garner that support with the SMA Treatment Acceleration Act petition. We have posted about the petition before, but wanted to add a few other things regarding raising awareness for it. The Strongs recently posted 5 ideas that one could do to help promote the petition. This is from their beautiful daughter Gwendolyn's blog:

50,000 signatures in support of SMA research is remarkable, but to reach 100,000 we need YOU! Here are 5 ways that you can help us get the SMA Treatment Acceleration Act passed this 111th Congressional session:
Household check. Make sure that your spouse or others in your household have also signed PetitionToCureSMA.com. It only takes 30 seconds.
Petition flier. Download our petition flier (click here to download) and put it up in your community (e.g. coffee shops, lunch rooms, community bulletin boards, etc.) or pass it out to groups or organizations and ask for their support, too.
Hit the streets. Download our petition signature template (click here to download) and start gathering signatures in person. You can either fax, mail, or email (vstrong@gmail.com) the completed sheets to us once you are done so we can input them.
Facebook. Use your Facebook status to remind your "friends" to sign PetitionToCureSMA.com and ask that they do the same. Also join the Facebook group "PetitionToCureSMA.com" and invite your Facebook "friends" to join as well.
Blogs, etc. Contact blogs, forums, or other online communities you frequent and ask for their help in promoting SMA awareness by posting the link to PetitionToCureSMA.com.

These are great suggestions. In another post they also suggested Twittering.

This Act might just seem like more money spent, but in reality the money that would be allocated towards SMA research is already in the National Institutes of Health's budget. If we can get this Act passed, so many will benefit--the sweet families who say goodbye to their little ones with SMA too soon, those who suffer with ALS or Duchenne Muscular Dystrophy, and so so so many more. Maybe it will even help Dakin to breathe on his own again. Please choose at least one thing to do to help spread awareness. Thank you so much for your help!!

Purple Shoesies and Purple Butterflies

Dakin got his AFOs (Ankle Foot Orthotics) the other day, and guess what? They're PURPLE. As I've said before, he loves purple. If you look closely you will see that they also have butterflies on them--his other love. They're making him look pigeontoed, though, so I'm going to have to ask the PT about that...

This is from OT the other day--he was helping turn the pages of his favorite book, 'Rainbow Rob'. This is the purple butterfly page. Are you sensing a theme? I wonder what he'll be into next.

And this is just a silly picture, but my new favorite.

So Dakin has outwitted me.

Let me give you some background: we have battled with Dakin over the eating issue for over a year now. We have tried every which way from Friday to get him to eat, with enough success that he could get his feeding tube out. We have sung to him, read to him, let him watch TV, etc., etc. It has always been at its core a power struggle, since eating is the one thing that Dakin knows that he controls--he can't crawl or walk or stop us from doing breathing treatments that he must have, but he can control his eating. There is nothing on earth I can do to make him swallow. When I figured this out initally several months ago, he ate a lot better because I let him win. Once the power struggle was off, he ate better.

Well, last week I decided that I was done with the pandering. I quit doing the things he had come to expect to be entertained while eating. He figured out very quickly what I was doing and acquiesed for a day or so, though I was mildly worried because I could see him scheming behind his little brown eyes. And he checkmated me: he will open his mouth now, but he spits it all back out. Yeah. I've been outmanuvered. By a toddler.

So what can I do now? I have no idea. I'm torn: do I go back to pandering to him? Do I inform him that if he is going to continue spitting I will only attempt to feed him for a few minutes (because when he wants to eat he will suck it down like it's going out of style) and then quit and let him be hungry for a bit? I am trying to figure out how I can take the power struggle out of it again, and I don't know what to do. At night he will take 500 ccs of milk without pausing for breath because he's half asleep and forgets he's playing his power game. We have come too far for me to quit now. I don't want him to get a G-tube, because his disorder doesn't include compromising of his swallowing muscles. It's not that he can't eat, or that it's even a danger to him--(his swallow study was perfect) it's that he is S-T-U-B-B-O-R-N.

I have to keep reminding myself to be grateful for that stubborness.

Cerebral Palsy Awareness Day!

Hi all! Today is a special day as it is Cerebral Palsy Awareness Day! We have come to know an amazing little boy named Logan who has CP--his story and his family have touched our hearts. Please take a moment to check out his blog at Life of Logan. In honor of this wonderful day, Keri, Logan's mom, is hosting a sweepstakes at the site--there are 4 great prizes you can win, so check it out!! Also grab a button for your blog--there are 3 really cute ones. I like this one:

I would post the HTML for it, but I am evidently not that intelligent...lol...so hop over to Life of Logan and grab it. Also, wear green today in support of CP awareness!

Here are some facts about CP:
- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. (As a mom of a child with an incurable condition, I deeply empathize with this--surely we can do something to help with this!!)

-Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow. (800,000 blows my mind. I can't believe there isn't more research, etc., going on about CP!)

Thanks, Keri, for doing all this work to help raise awareness!!

Wordless Wednesday

Well, yesterday was miserable for Dakin. It was non-stop suctioning, and he was in such an awful mood all day. We finally figured out the miserable part: he is teething once again--that makes #s 11 and 12. The heavy secretions I am assuming were due to the pollen that has painted our bit of Texas (literally--the cars are yellow) and then the rain that came and got all the mold going. But at any rate, today he was his usual happy self and better with the lung secretions. Hurrah. It was gorgeous today and we even got out on a walk. Dakin enjoyed seeing our neighbor weeding and the 'Texas Grasshopper' pumping oil down the street. He was also all smiles when we 4-wheeled through the field near our house.

So this is my first attempt at a 'Wordless Wednesday' post. I guess it wasn't quite wordless, but oh well. This was Dakin in the rehab hospital at about 4.5 months old.

Letter from Senator Lisa Murkowski About the SMA Act

Mommy was born and raised in Alaska, and Gramma and way rad Uncle Trevor are still up there. So Gramma has been busy contacting the lawmakers up there about the SMA Treatment Acceleration Act. She spoke with a representative from Senator Mark Begich's office and informed her about SMA, the petition, and told Dakin's story. She said she would contact her counterpart in Senator Begich's office in DC and communicate her support for the Act.

She also spoke with a rep in Senator Lisa Murkowski's office. While she was on the phone with him, he looked at Dakin's blog and read through what we have posted here. Gramma also talked to him about the petition and the Act, and he too promised to speak to his counterparts in Washington. In response, this is what Gramma received from Senator Murkowski:


Thank you for contacting me with your support for the Spinal Muscular Atrophy Treatment Acceleration Act. Additionally, I thank you for sharing Dakin's story with me.

The legislation, if enacted, would require the Secretary of Health and Human Services to establish the Spinal Muscular Atrophy Coordinating Committee in order to coordinate activities across the various departments at the National Institutes of Health (NIH), and among other Federal health programs with activities related to SMA. I believe that greater interagency coordination would enhance the scope of the research performed so as to mitigate the challenges stemming from genetic disorders.

You may be interested to know that in 2003, the National Institutes of Neurological Disorders and Stroke (NINDS) established the Spinal Muscular Atrophy Project: A Collaborative Program to Accelerate Therapeutic Development for SMA. The SMA Project's unique collaborative process between private, public, and non-profit partners provides a model research program that can be replicated to accelerate the development of safe and effective treatments for a wide variety of disorders.

The SMA Treatment Acceleration Act has not been introduced in this Congress. Should the legislation be introduced and considered by the full Senate, I will have your support in mind.

Again, thank you for contacting me and all my best to Dakin.

Sincerely,
Lisa Murkowski
United States Senator

I loved how personalized this letter was--I do think Senator Murkowski may have taken a look at the blog (I check the traffic and we do get some from DC sometimes...lol). Gramma also promised to bug them when the Act gets reintroduced. Thank you for being a great advocate, Gramma!!

Butterflies

Dakin loves butterflies (especially purple ones). He and his night nurse frequently discuss them, and she has evidently showed him how they fly. So the other night I asked him if he would flap his wings like a butterfly, and he did so! He has made this movement quite a bit lately, and we're pretty happy about it because he seems to be moving his right arm a lot more than he has been the last 6 months or so--this last summer he pretty much quit using it. We're hoping he's coming out of that. He doesn't really have too much strength in his hands, though, so that's why he's letting them hang.

Oh, and sorry about the background noise--night nurse was vaccuuming Dakin's room. I didn't think the noise would show up!!

Vent Clinic

Yet another vent clinic under our belts, and we have some good news! (I like going to vent clinic for that very reason--it's always good news and excellents all around...) Dakin's chest x-ray looked 'excellent' as were his blood gases. His weight gain was a little slow, but not enough for the dietician to bug about it. In fact, she said we could just check in with her every month or so instead of every week as we had been doing! YAY! In addition to that, Dr. C (pulmonologist) said that this summer we will be working on doing trach collar trials (where we take him off the ventilators for a little while) and getting him off his diuretics and his heart meds!! Ah, I love vent clinic. All they say is how good he looks. It's always a good visit. Yippee!!

Sillyface

It has been a sorrowful weekend. Two sweet little ones finished their battles with SMA, and another should have celebrated his first birthday. In light of all this, I haven't been feeling much like writing, but I wanted to do something and so I thought a silly picture might cheer us up. I love this picture--it was taken shortly before Dakin "crashed," if I may borrow an expression from Victoria.

There was a really good point to this weekend, though--as many of you already know, President Obama lifted some of the restrictions on stem cell research. I feel he has put some very responsible stipulations on how those stem cells are obtained, and so I am feeling pretty good about it. Hopefully we can get this stuff going and get some positive results for our SMA kiddos. For Dakin's particular type of SMA, they have already done a successful stem cell transplant on a mouse in Italy, (of course, Italy--as far as we are aware no one in the US is researching Dakin's type) so that's a step, anyhow.

Kind of a ramble. Sorry. But enjoy the picture anyway.

Missed Birthdays

As some of you already know, March 7th would have been Owen Shuler's 1st birthday. He passed away from SMA Type 1 at 5 months of age. In memorial and to honor his birthday, a video was created, and his parents asked that it be shared. Here it is. Happy Birthday, little one.

Yikes and Double Yikes

Well, we have been so so so diligent in keeping germs out as much as we can be--kicking nurses out who even have a shade of a sniffle, constant Germ-Xing, etc., etc. But despite our best efforts, Mommy has come down with strep, which is why there has been no updates--sorry. Thankfully it's not a bad case and I've been on antibiotics for 24 hours now (as well as in 'isolation' as much as I can be), so we should be ok. Please keep Dakin in your prayers to not come down with this. We WILL get through cold/flu season! Just 5 or so more weeks till we're in the clear!

Holy Cow

Dakin ate about a 1/4 cup of mac and cheese today for lunch. Not ground up, just straight mac and cheese. I'm shocked. I didn't think he could handle that kind of thing yet, but I am thrilled! Hah, take that, naysaying docs. Nanny-nanny boo boo.

Another Video, Anyone?

This is another bit of silliness from Dakin. I'm not sure what he's trying to do here--he almost looks like he's trying to get up. At any rate, he's silly. Enjoy.