Monday, June 29, 2009

KLTV News Story!

Hi all! KLTV was wonderful! A HUGE thanks to them for helping us tell our (and so many others') story and getting the word out about SMA/SMARD! Here's the link for those who may have missed it:

http://www.kltv.com/global/Category.asp?C=151146&clipId=&topVideoCatNo=15129&topVideoCatNoB=107660&topVideoCatNoC=108625&topVideoCatNoD=123412&topVideoCatNoE=107065&clipId=3910780&topVideoCatNo=66626&autoStart=true

Thanks again, and thanks LaKecia! You were wonderful to have in our home!

Thursday, June 25, 2009

Dakin in Longview News-Journal/Other Great News!

What a day! The article in the Longview News-Journal was great! Thank you so much Mike for the great story, and Karen for setting the whole thing up!!

We got some other great news today--Dakin is going to be on KLTV (ABC) on Sunday's evening newscast! Localites, check him out! We will try to get the video for those of you not in the area.

Tuesday, June 23, 2009

East Texas Signature Drive Update

Hi all! Ok, here's the deal: from our sad 57 we have now gone to over 100 signatures from the Texas Congressional District #1!! This was brought about by a few things: we went door knocking, I brought the petition to our women's night, and my amazing new friend Nichole! Nichole just moved in across the street from us, and already has proven to not just be a wonderful person, but a wonderful friend. Today, in the 100-degree-with-East-Texas-humidity heat she sat outside the library and filled nearly an entire sheet of the petition. Thank you so much, Nichole. We are so lucky to have a friend like you!

We are also excited because we had an interview with the Longview News-Journal today about Dakin and the SMA Treatment Acceleration Act! The story is set to run Thursday, and we are hoping it will help raise awareness about SMA, SMARD and the Act. Thank you Longview News Journal!!

More updates later!

Saturday, June 20, 2009

Happy Father's Day!





On the day dedicated to daddies, I thought we would talk about the best one in the world--Dakin's daddy. He is wonderful for so many reasons--he is loving and patient, and a wonderful teammate in all of this. He loves to play with Dakin. He loves Dakin so completely. Happy Father's day, Da da!!




Friday, June 19, 2009

East Texas Signature Drive

Well, we discovered, to our major underwhelming, that there were only 57 signatures from our congressional district on the Petition to Cure SMA . FIFTY SEVEN. Pretty sad, it's true. In addition to being incredibly lame, it's not going to work for us a few days from now. You see, we have an appointment with Congressman Louie Gohmert from the 1st Congressional District of Texas coming up, and in order to get his attention with this, we need more signatures!

So, we are having a signature drive. ALL EAST TEXANS: Make your voice known to Congress. Let's let Congressman Gohmert know that we will no longer tolerate Spinal Muscular Atrophy taking our little ones. Let's give Dakin a chance to perhaps breathe without his ventilator someday. Help us out! Tell your friends, get them to sign! It seriously takes all of 25 seconds.

Tuesday, June 16, 2009

Not A Whole Lot...

So I haven't had a whole lot to blog about recently--it's been pretty run-of-the-mill around these parts recently. Dakin spent about 20 minutes tonight blowing raspberries and making us all laugh. His little smile is so sweet--he knows when he is funny and loves to make us laugh. I love that little smile--it is a little ray of glorious, warm sunshine. I wish I could package it and sell it. I'd be a rich woman.


Watching him tonight, I was struck again by what a miracle he is. There are so many things that by nature of his disease he probably shouldn't be able to do, but does anyway. He is beautiful, smart, stubborn, and so happy. I don't know that he would be the same child without SMARD. He is so much more than I ever could have hoped for, and I am so blessed to have him.


He had scooched down on my lap, and I thought it might be a good opportunity to capture his eyelashes.





video

Saturday, June 13, 2009

Blah

Dakin is once again staging a hunger protest. Not sure why this time. He's doing ok on intake, just not enough. I'm hoping it's just this tooth that is taking a eternity to get out. Guess we'll see. I wish I could get a scrolling marquis installed across his head so I could figure out what's going on in it...
Anyhoo, he's his usual cute self. We do have a bit of good news--we are now officially off his diuretics! It's been a long time in coming, and we've been dragging our feet a bit because every time we try to come off them it storms or the molds are up. Cross your fingers that it goes well this time, and we are requesting prayers for this boy to eat!

Thursday, June 11, 2009

Vent Clinic Again

We had vent clinic on Tuesday. It went fairly well this time--Dakin's blood gases were a little high, but he had crud in his chest when she was drawing the sample. His chest x-ray looked good, though, and everything else is good. Dr. G (pulmonologist) was going to change Dakin to a larger size trach but decided against it.

The last time we were there we had briefly discussed doing trach collar trials (where Dakin's off the ventilator completely). Now, this was with Dr. C, the other pulmonologist. We brought it up with Dr. G, and he suggested trying him off the vent for 5-10 minutes, and he would come back to see how he was doing. We laughed at that--Dakin panics when he's off the vent at all. Sooo, we took off the vent, and Dakin lasted about 7 seconds. Needless to say, no more trach collar trials. His chest muscles are just not strong enough. This was disappointing, as I was hoping he would be able to come off for at least a little while, but at least at this point it's just not going to happen.

On the bright side, he is doing great otherwise. Despite not doing well in the trial, I am grateful that he is happy, intelligent, communicative and thriving in every other sense. It's ok with me that he will remain part machine (I am resisting the temptation to make a Battlestar Galactica reference here). I have so much to be thankful for.

Monday, June 8, 2009

Oh My Stars

I think we have hit the terrible twos a few months early. We hauled Dakin and all his equipment to church yesterday, and it went pretty well: in the first meeting he turned white and couldn't breathe, but we took care of that in a jiffy and all was well during the second meeting. The third meeting, though...oh boy. Nothing I did made him happy. I put him on the floor with a toy--no go. I put him in his chair--he just squawked away. I held him--he wasn't having any of that.

And then the raspberries began.

Well, he found his audience with that. All the women in the meeting were laughing at the raspberries, and of course it was game over from there. I even took him out in the hopes of calming him down, and the second we stepped back in the room he started with the raspberries again. Well, thankfully, we have a wonderful church family who told us that if he wants to scream and holler then he should feel free so to do. It helps that he's cute.

It was, admittedly, kind of nice to have a neurotypical disruptive child moment. I'm grateful that he can vocalize enough to be disruptive. Little miracles...

Friday, June 5, 2009

Dakin's New Favorite

Well, we are (thankfully) finally off FreeCreditReport.com commercials...and now, presenting the newest twist to Dakin's eating game:
Handy Manny!



He will eat while Manny is on. I can't figure out why he loves this show so much. He gets the biggest smile on his face when it comes on, and he'll start flapping his arms when the opening is over. One or two episodes began with a butterfly or ladybug, and so I don't know if he's anticipating that happening again, or if he thinks Squeeze (the lockjaw pliers) is a butterfly. At any rate, thank goodness for DVRs. I don't know how much he'd be eating without Manny at this point.

Daddy is pleased with this development--Manny is a man's man...

Wednesday, June 3, 2009

Monday, June 1, 2009

SMA Treatment Acceleration Act Back in Congress

I am very late in getting this announced, (and I'm sure many of you know about this already) but the Spinal Muscular Atrophy Treatment Acceleration Act has been reintroduced into both the House of Representatives and the Senate! Please make sure your household members have signed the petition, and take a few moments to contact your Senators and Congressmen/Congresswomen. It doesn't take but a few moments, and you can call them or email them regarding the Act and how you would like to see it passed. Find your Senator here and your Congressman here. Be sure to mention the bill numbers: in the House it's H.R. 2149 and in the Senate it's S.1158.

Remember, this is a bill that already has bipartisan support. It will help towards treatment and a cure for SMA, and perhaps a treatment for SMARD as well. Please take just a few moments to help garner support for the Act by contacting your reps!

What you might like to mention when you email/call:
  • SMA is the number one genetic killer of children under 2
  • One in 40 people carry the gene that causes SMA, making it very common
  • The NIH chose SMA as one of the diseases closest to treatment and cure (we are talking years here, not decades!!!)
  • The SMA Treatment Acceleration Act may also benefit other neuromuscular diseases, such as Tay-Sachs, Duchenne Muscular Dystrophy, and (maybe--cross fingers!!!) SMARD (Dakin's condition)