Kind Of A Boring Weekend

Which is really a good thing. We've been suctioning a bit of blood from his trach, but I'm pretty sure it's because it's been so dry here, and we've had the heater going. So we've been dropping a few little drops of saline down his trach to help with hydration, and it seems to be doing the trick.

Daddy and Dakin were playing the other day, giving Mommy some Mommy time, and this is what Daddy came up with...

Democracy in Action

A few weeks back I contacted Senator John Cornyn (our senator--TX) about the SMA Treatment Acceleration Act. We got an email back from him today. I'm sure it's probably a form email, but I felt it sounded positive, and since Senator Cornyn isn't on the list of Senators already endorsing the act I am hoping our writing in will, in some small way, help get him on board. Here it is:

Thank you for contacting me about the SMA Treatment Acceleration Act (S. 2042). I appreciate having the benefit of your comments on this issue. As you may know, S. 2042 was introduced in the Senate on September 12, 2007. S. 2042 would authorize the Secretary of Health and Human Services to conduct activities to rapidly advance treatments for spinal muscular atrophy, neuromuscular disease, and other pediatric diseases. Though S. 2042 was not enacted prior to the adjournment of the 110th Congress, you may be certain that I will keep your views in mind should the Senate consider relevant legislation during the 111th Congress.

I strongly support the goals of medical research, prevention, and successful treatment. America’s commitment to medical research and development demonstrates our resolve to understand and combat these terrible diseases, discover effective treatments, and improve the health of all Americans.

I appreciate having the opportunity to represent the interests of Texans in the United States Senate. Thank you for taking the time to contact me.

Sincerely,
JOHN CORNYN
United States Senator

Pretty cool, eh? I'm excited. Yay Democracy! If you are interested in writing to your own representatives, you can find the info regarding the SMA Treatment Acceleration Act and how to contact your reps here: look at the sidebar. It doesn't take long, and it makes a difference!

Also, Dakin fell asleep in a cute position today, and I thought you all might enjoy his picture. Sorry it's so dark!

AWESOME!

YAY! I got a marvelous Facebook email this morning informing me that The SMA Petition (petitiontocuresma.com) has increased the signature goal from 50,000 to 100,000!! WOW! I am asking everyone who hasn't already signed to please take 30 seconds and do so, and pass the word along! With everyone's help the Act will no doubt be passed soon!! Yay yay yay!

Our inspiration

On the Kidz site today is a request for inspiring posts, so I thought I would take a second and elaborate on my inspiration, which is Dakin, of course. His strength is amazing...he is amazing. He is staring at me at the moment, wiggling around in his Bumbo chair and laughing at me. It is so astonishing to think about what he has done in one year. Despite him being close to doing so, he was too stubborn to quit breathing. He has gone from not eating to consuming nearly a cup of food at every meal. He went from being unable to vocalize (due to his trach) to speaking over his trach incessantly...you can't get him to be quiet! He has a love of books, people, music and butterflies. He is my joy and inspiration every day. If this sweet child can decide to keep going despite being on a six foot leash (stupid ventilator) all of the time then maybe I can find some strength pocketed away in me. And maybe you could too, if you happen to need some. We are so blessed to have an angel living in our home, especially one as stubborn as this one! Thanks for letting me share this, and I apologize for how piecemeal it is...I didn't get much sleep last night...

And the Verdict Is...

We can keep the feeding tube out (at least for another week)! Dakin gained anywhere from eight-tenths (does that reduce? Yeah, I guess so...four fifths) of a pound to a pound (our digital scale is not perfectly accurate). Wow! The dietician was impressed and said to keep doing what were doing for another week and we'll re-evaluate next week. Yay Dakin! He's been eating like a pig! Must be nice to have that stupid tube out of his sinuses and throat. He's eating so much better than he ever did with it in, and he's even burping!

One Year Ago Today....

Dakin "crashed." Today was the day that we nearly lost him and didn't even know it. Thank heaven that I was able to get in to see the doctor, and that my dear friend Heather took us over there on her way to Wal-Mart. Thank heaven for the Nurse Practitioner who recognized that there was a problem, and took us over to see our usual pediatrician. Thank heaven for the nurse who packed us in her car and drove us to the ER, and for Dr. H (pediatrician) who canceled all his appointments the rest of the day to stay with us until the helicopter came to take us to Dallas. Thank heaven that Daddy was safe coming in to Dallas while Mommy went in the helicopter with Dakin. And thank heaven for all the sweet, amazing nurses and RTs who lovingly cared not only for Dakin, but for Mommy the whole time we were in the PICU, and the wonderful doctors who racked their brains to discover what was wrong.

All in all, thank heaven. I have been telling myself that the first year of something like this must be the worst, so here we are, having survived one whole year of it. Incredible.

Successful Week!

The weather took an upturn this week and we got to go on our wagon walk! Here's Dakin with Daddy.

We have made two successful changes this week: Dakin is completely off his Erythromycin (which is an antibiotic but in small enough doses helps with gastric motility--it was to help with his "reflux"). Dr. B (gastroenterology) said we could go ahead and take him off it. Next med to be gotten rid of is the Prevacid.

Secondly, we have lowered Dakin's Pressure Support setting on his ventilator. The last time we tried to do this he ended up pretty tired the next day, so we had to up it again. This time around he's been acting normally, and as far as we can tell there's been no lowered oxygen saturation, so we're feeling pretty optimistic about keeping it down. It was at 16, now we're at 15, and once we get down to 14 I think we can start these trach collar trials.