Thursday, February 26, 2009

Dakin's New Ride

Yep! We FINALLY got a customized stroller! This one is a loaner until ours comes in--it'll be another 6 weeks or so--but Dakin was so excited to be in it today!! He was all smiles during his walk. This is a really exciting development for us, for a few reasons: 1. Mommy can finally get up off the floor (her joints are shot), 2. The stroller will afford us a modicum of independence that we have hitherto not really had--we are really looking forward to this summer when we're out of cold/flu season and we can go out to dinner (or the zoo, or church) without having to make special arrangements in advance, etc., etc. And 3, developmentally it will really do good things for Dakin. So anyway, HOORAY!



video

Tuesday, February 24, 2009

Attempted Patricide

video
Dakin enjoys punching Daddy. I am allowing this for the moment because it encourages him to use his arms, which are far weaker than his legs. And besides, it's kind of funny. Sorry about the video quality--it's dark in our house.

And I just really like this picture. Just when I think his eyelashes can't get any longer, they do. They're about a quarter inch long!

Sunday, February 22, 2009

Videos Promoting the Petition!

OK, as promised, way rad uncle Brian's video of Dakin's birthday party to promote the petition! Thanks Brian! You rock!


There was another amazing video created by Sarah in Michigan, but I can't seem to get it on YouTube. She did a great job on it, though, so thanks, Sarah!!

Thursday, February 19, 2009

Thinking We're Out of It...

"It" being the crazy thick secretions Dakin has had the last week or so. The weather in East Texas, while always stupid, has been especially so in the last week, and it has really affected Dakin's lung secretions--it seems like we went from never suctioning to suctioning tons. Fortunately, it wasn't ever yellow or green (TMI, sorry, that's our reality...lol) so he wasn't sick. We had him on oxygen for a few nights, and then the docs said to up his pressure control on his ventilator, which seemed to help. But we are appearing to be coming out of it. My plan for tonight is to leave his pressure control where it's supposed to be and see what happens. Hopefully he'll keep his sats up and we'll be good to go.

Dakin has two uncles--way awesome uncle Brian and way awesome uncle Trevor. Way awesome uncle Brian made a video of Dakin's birthday party to promote the Petition, but I don't know how to post from YouTube. Anyone able to help me out? I'm so incapable with this kind of stuff...

Tuesday, February 17, 2009

Rainbow Rob to the Rescue


This is Rainbow Rob. And thank goodness for this intrepid penguin, because without him I'm not sure Dakin would be eating all of his dinner. For two nights now he's been really fussy about eating his dinner unless this is being read to him. Now, I know that this could be establishing a negative pattern for the future, but since he has to gain weight in order to keep his feeding tube out, I will do what I have to...including multiple readings of Rainbow Rob.

Sunday, February 15, 2009

New Friend

This is our new monkey puppet friend that we won in the weekly giveaway at Kidz. Dakin named him 'ba ba', which we're interpreting as Bubba. So here's introducing Bubba! Thank you again Tara and Kidz! By the way, Dakin's mouth is purple because he has thrush AGAIN, so this time we're doing Gentian Violet for it.
And now we're going to take a bite of Bubba.

Friday, February 13, 2009

Dallas Visit

We had a big ol' trip to Dallas today, which entailed going to Medical City to visit with the geneticist and the ENT docs. I was dreading going to see Dr. S (geneticist) because last time we saw her she was all doom and gloom, blah blah. It was an unpleasant visit, to put it mildly. But this time I came prepared with all the genetic knowledge I have been able to acquire (not much, by the way), and I got some answers. The long and the short of it is we still don't know if Dakin has two mutated copies of his IGHMBP2 gene or if it was just one. And it will evidently be a while before we are able to find out--the lab in England (they don't test for SMARD in the US...SO annoying) is supposedly getting the other test to check soon. Daddy and I can get tested, though, and that might answer the question quicker. Guess we'll see. There are positive and negative aspects to only having one mutated gene, so it's a real Catch-22.

Dr. H (ENT), whose visits are always very short, said his stoma (the trach hole) looks OK. That was good news, since I was a little concerned that they would need to open it up more. Not at the moment, thank goodness.

Wednesday, February 11, 2009

Kidz Kick-Off Party--Check It Out!

Kidz is one of my new favorite websites--it's an awesome place dedicated to Special Needs kids. We only found it a few weeks ago, but we have already been able to make some great connections with other special needs families.

We wanted to let you all know that Kidz is hosting a Kick-off Party this next week, and it's going to be awesome! They are doing giveaways and grand prizes, so everyone check it out! I would give the HTML for the button, but I can't figure that out (sad, I know), so you can get it here. It is a truly inspirational site. Check it out!

Monday, February 9, 2009

Bubbling Snot and Conversations With Dakin

We'll start with the snot. Tonight, as we were getting Dakin into bed, he needed to be suctioned. We put some saline down his trach and bagged him for a second to push the saline down into his lungs (to loosen his lung secretions so we can suck them out). Well, as soon as Daddy got the bag on his trach and started squeezing, I hear a "Oh my gosh, look at his nose." I looked up, afraid to see blood or something, but he had huge snot bubbles coming out of his nose--the bag had blown his nasal secretions out of his nostrils. So we sucked his nose out along with his lungs and he is now sleeping happily.

Dakin, while always having had been very talkative, has decided lately to have full on conversations. They are always with Daddy and usually go something like this:
Dakin: Da da?
Daddy: Yeah?
Dakin: Da da?
Daddy: Uh-huh?
Dakin: Da da?
Daddy: Yeah?

You get the idea. It goes on for a while and will usually terminate with Dakin finding something else to look at or occasionally with a "ha ha." He has also started saying quite a few words: butterfly (ba ba ba), bye bye (which sounds remarkably like butterfly), purple (also sounding similar to butterfly, though occasionally he'll get a l in the second syllable), Butt Paste (ba pa)--thanks, night nurse, lololol. One other pretty funny thing he'll do is look up at the ceiling fan and then look at you, trying to get you to look up. He's a funny little thing.

Thursday, February 5, 2009

New Button! Grab It!

One of the wonderful admins at Women Doing More (I won't say her name since I didn't ask and don't want to embarrass her) made a button for Dakin!! I had been thinking about needing a button but I have NO idea how to do it, this wonderful woman somehow read my mind and created this beautiful button. Thanks again, WDM.

Grab it for your blog--it links directly to the petition. Help us spread the word!!

SMA Petition

Monday, February 2, 2009

Dakin/SMA Petition Featured on Women Doing More!

Yay! This is really exciting--Dakin, his story and the SMA Petition were featured today on a wonderful website called Women Doing More. This amazing site spotlights opportunities to help various causes, and I am thrilled to have them post about Dakin and the Petition! There will also be a permanent link on the site to the petition. Thank you SO much, Women Doing More!!