Monday, November 30, 2009


With our H1N1 vaccine rounds! We all got them on October 30th, and Dakin got his second one today. Hooray. Too bad the stupid virus is mutating now, so Dakin is in just as much danger as he was before, but oh well.

I did want to take a second and thank our local Department of Health, though. They have been beyond good to us, and have taken us under their wings in helping us get the vaccines. We had actually stayed at the Department of Health one night (special needs shelter) when Hurricane Ike blew through and our power went out--I'm glad we did now, because it gave Dakin a face for them, and they were eager to help him with the shots. They were so wonderful then, and now--they arranged it so we didn't have to go in the building to get the shots, which is something our pediatrician couldn't do.

*Edited to add that evidently the mutated form is reaaaaaaaally hard to spread from person to person and is really only dangerous to people who for some reason might be resistant to tamiflu to begin with. That's what I get for listening with one ear to the news and not two! Thanks, Monica!! I feel better. Maybe we can do that church Nativity after all...

Friday, November 27, 2009


Happy Thanksgiving to all! I hope you had a wonderful holiday!

We just stayed home and our night nurse joined us for dinner. It was so nice to just relax and enjoy one another's company.

This year, I am so thankful that Dakin is still with us: breathing, eating and in general thriving--as much as a child with a neuromuscular disease can. I am thankful for his stubborness in the face of his disease. I am thankful that he has miraculously regained the use of his right arm, and is getting better at lifting his left one while sitting. I am thankful he has a group of nurses who not only take amazing care of him, they LOVE him. They are like family to us. I am also thankful for a medical team who is beyond compare.

We asked Dakin what he was thankful for. I scrolled through a list of things that he shook his head 'no' to until we got to his stroller. That's what he's thankful for this year...ah well.

Tuesday, November 24, 2009

Virtuoso training.

Friday, November 20, 2009

Pound Out SMA/SMARD Finishes!

Hi all! Well, we are nearing the end of November, and so Pound Out SMA/SMARD is officially at an end. I managed to lose, out of my goal of 30 pounds...


Oh well. I did get some weight gone, and my partner did fantabulously, so I don't feel so bad. But it is that time that we must needs gather our pledges. So, if you pledged me 1.00/pound, you can donate your 10.00 at Unite for the Cure, or you can send me a check (email me if you want to go that route).

Now, let me remind can still donate 30.00 even though I'm lame and only lost 10 pounds. Or you can donate 15 dollars. Or 8,000,000 if you like. Every little or big bit helps. Dr. Keirstead's research was recently named by Esquire magazine as one of 6 projects that will change science--and maybe, just maybe, might be able to help Dakin breathe on his own someday. And walk.

Anyway, I will have a final total for you all once the pledges are in! Thanks again for your support!!

Wednesday, November 18, 2009

HELP! One Last Big Push

We have a window right now to get the SMA Treatment Acceleration Act some attention (and, fingers crossed) passed. PLEASE PLEASE PLEASE, if you have not signed, or anyone in your household has not signed, sign the Petition to Cure SMA. Let's show Congress that we won't allow this disease to take our children any more!!!

Saturday, November 14, 2009

Step Right Up

And see the amazing pig-boy!

Yep, that's right, ladies and gentlemen. Right here, we have a phenomenon of the greatest magnitude--once a child, now a pig. How did this amazing transformation occur? Books. That's right, folks, books!

So suffice it to say our new eating system is working well. Dakin put down 30.5 ounces of food while he was awake the other day, and another 10 while sleeping. That was the most so far, but his average has been very high.

Besides the obvious elation over getting to say 'nanny nanny boo boo' to the nutritionist, we are thrilled about this because hopefully next time we go to vent clinic there will be no more inpatient feeding program talk.

In addition, his eating well has fixed another problem. He had been having some pretty regular constipation, but since he upped the table food it has almost ceased to be a problem. I was starting to get worried that the constipation was part of his disorder--intestinal musculature degenerating--but apparently not.


So get your tickets now and see the pig-boy. Might be your only opportunity!

Monday, November 9, 2009

Bubble Pics, As Promised

Another great bubble day. Check it out!

Dakin giggling with delight at the popping.

Saturday, November 7, 2009


We had the most amazing morning. It was GORGEOUS here--low-ish 70s, bright blue sky. After a morning of housecleaning, we decided to go outside and play with one of Dakin's birthday gifts. It's a magic bubble wand--it blows giant bubbles.

He loved it. He loved watching them go up and up. He loved letting them pop on his face--he got an enormous sunny smile on when that happened. He even said "pop."

It was a quiet and perfect way to spend part of our morning. Wish I had pictures, but I didn't think I could bubble at the same time I was shooting...ah well. We'll get some later. I hope I never forget today.

Friday, November 6, 2009

Ok, you need to read this

I stumbled across this this morning, and I feel the need to share it.this out. It's about a little boy who has been diagnosed with terminal cancer, and his one request is to celebrate Christmas this weekend (he has two weeks left). The blogger this link is from is asking people to send Christmas cards. I'm always hesitant about this kind of thing, but this one I feel is legit--heck, they didn't even ask for the cards, a friend of theirs did. We are mailing ours tomorrow--check out the link. All it will cost you is a stamp and some love.

*Edited to add: a commenter on this post linked an article to, so this is legit.

Wednesday, November 4, 2009

Cautiously Optimistic...Revisited

If you've been reading this blog for a bit, you may have noticed one or two feeding posts. If you're not familiar with Dakin's history with eating, here's a condensed version: up until about 2 months of age, Dakin ate like a horse. Then the SMARD started kicking in and he ate less and less. At his 'crash', they put a tube down his nose into his stomach to feed him. After he was trached there was never any talk of a permanent feeding tube (which now I realize I was very lucky with--most trached children are automatically g-tubed as a precaution against aspiration). We went home with the nasal feeding tube and attempted to help him eat properly again. That went on for a long time, until this last January, when they said he was eating enough 'real' food to pull the tube. Sometime after that I decided I would change things up and stop the pandering (TV, books, etc.) to get him to eat.

Bad move.

Yeah. He totally shut down except for the liquids. You can't outsmart this kid.

So we have been mostly liquids for many many moons now, but the nutritionist is fussing at me that he needs more variety and needs to be eating off a spoon. (He feeds himself things like cheese, but he takes tiny bites--he's very protective of his airway, thank goodness.) She has suggested the feeding program at Baylor, which for us would be a month long (HELL to the NO) inpatient stay while they attempt to figure out his issue.

She told me that the program focuses on positive reinforcement. They find something that motivates the kiddos to want to eat (I almost laughed out loud at that...boy howdy, he is hard to please). But I thought we'd try something we have done in the past--reading--except change it up a bit. Hitherto we had used more of a negative reinforcement with him (if you don't eat, we won't turn the page)--and in hindsight I should have known that would never work since he is so stubborn.

So we switched to a positive spin on it. We fished out three of his favorite books (you may remember Rainbow Rob) and set down with him and a cup of pudding. We let him know that this was up to him: if he wanted to see the next page, he could take a bite. If not, he didn't have to.

He ate EIGHT ounces of pudding.

Later on, he ate EIGHT ounces of potato soup.

If you don't have your calculator and are as bad at math as I am, that's SIXTEEN ounces of 'real' food. He also put down 4 oz. of carnation, 4 oz of water and 3 oz. of V-8 fusion juice, and will undoubtedly eat more overnight.

So I'm guessing this is working, at least until he checkmates me again. Keep your fingers crossed--he has never eaten that much 'real' food in one day!!

Sunday, November 1, 2009

Halloween/Birthday Party

Yesterday was a beautiful day--perfect for a birthday AND a holiday (Mommy's favorite!). Dakin had a great birthday, and so I thought I'd show you how his day went.

No, I don't want to wake up!

Getting dressed in Handy Manny costume! I would also like to point out that he is using both of his arms in this pic--he has regained the ability to bring up his right arm, something we haven't seen him do in over a year!
Breathing treatment (the vest jiggles him, that's why the pic is blurry).After some time in the stander and breakfast, time for up in the 'brrm brrm'--Dakin's favorite thing!Naptime already?See? I told you! Beautiful day. Here's Dakin in full Handy Manny regalia. Here's the cake Mommy slaved over. Yes, it's Rocket from Little Einsteins. (My hands are still partially pink from the food dye!)Playing with new toy from nurse Jane--Dakin hits a button and the tools dance up and down.Later on, after another breathing treatment and more eating, here's Nurse Brenda and Dakin's new Handy Manny book! It has tools to use to help Manny build something...can't remember what now. Night night. Dada usually brings him in.
No trick or treating for us this year--maybe next year. Still, it was a great birthday--he was sung to on multiple occasions and got tons of gifts. Thank you everyone for the birthday wishes!