Tuesday, July 26, 2011


You know what I did today?

I played chase with my son, in his powerchair. He finally got the speed adjusted to normal person walking speed, and he chased me around the church gymnasium with the biggest smile on his face. He went through the partition separating the gym from the chapel, and back again. He drove it for an hour. But his favorite part was the chasing-I could tell.

It was amazing. We got to be just like everyone else.

I also have to add this: yesterday Dakin was sitting in my lap while watching Mickey Mouse Clubhouse. As the opening credits played, he said, "Clubhouse so bootiful. Like Mommy bootiful."


Saturday, July 23, 2011

Wow/Climb for Silas Update

OK, so I have been very, very remiss in posting on here. And it's not because nothing has been going on. The lack of posting's cause and effect is as follows: It became summer in East Texas, which led to 100-115 degree temperatures, which led to being trapped inside which led to slowly going insane which led to a serious case of cabin fever which led to a sudden and unexpected addiction to Pinterest which has stolen all of my evening blogging time. So blame the heat or blame Pinterest, just don't blame me. :)
Anyhoo, I did want to update you all on the Climb for Silas. Ten year old Gus has been hard at work this month, climbing mountains to raise money to cure SMARD. He has raised, so far, 1557.78 to go towards curing Dakin. Fifteen hundred dollars. Amazing. His goal is 50,000, and he is determined to raise it, ready to hike again next year to do it.
He has one more week to go this year. If you would like to donate, please do at http://www.facebook.com/l.php?u=http%3A%2F%2Fgenetichealth.jax.org%2Fclimb-for-silas.html&h=6AQAbUlG7 .
Here is a pic of Gus, his amazing mother Renee, Dr. Greg Cox and his family, and the photographer's sweet daughter. It is humbling beyond words to see the dedication of people-WHO WE HAVE NEVER MET!!!!-in curing this awful disease. It warms my heart and touches me very very deeply to know there are people who care so much about Dakin-about giving him a chance at a life unencumbered by a ventilator or wheelchair. I can't thank them enough and will never be able to. But if you want to help, please donate. It means more than I can say.

Saturday, July 16, 2011

Vent Clinic


So, like we always do, we packed up and headed out at 7 ish to drive our two and a half hours to Dallas. After checking in and on our way out of the parking lot I managed to back into a car. Yay me. So Dakin entertained himself by watching Little Einsteins on the iPad and the nurse by playing on her iPhone while I waited for the police. Yay fun. That was fortunately over quickly and we got to the fun stuff..

The aquarium!!!

We thought that since it is like the temperature of the sun outside that the aquarium might be a good visit again. And it was. There were a million kids the with various groups, but the leaders were all very considerate of Dakin and made the kids move so he could see in the stingray petting tank. And when they cleared out, magic happened. We hiked him up, stuck his little hand in the water and he got to touch them too. He loved it and kept saying "more!" every time we talked about it after. He also enjoyed looking in the shark tank.

Back to vent clinic, where Dakin knew he was getting blood drawn and therefore had a freakout fest. But other than that, all looked good- well, other than the fact his pulmonologist told me his scoliosis is getting worse....well, sir, tell me something I don't already know.

It all went well and we got out super early. Yay and we will be back in October.

One thing did strike me though...something that underscores our new normal. This is how the conversation went:
Dr. G (pulm): so, any bleeding from the trach?
Me: yeah, a little, but we were out of town for a weekend.
G: treat it with antibiotics?
Me: nah, it was only because he was on an HME and it cleared right up.
G: Ok.

So here I am, talking about the fact that my son's LUNGS WERE BLEEDING like it was nothing. Like we were talking about the weather. And he was totally fine with how we handled it.

So yeah. This shows a few things: one, how casual this stuff has become for me. And two: how much our docs trust me. Which is wonderful. But still weird.

Tuesday, July 12, 2011

Our Stop in Arkansas

On our little jaunt to Missouri the other weekend, we also had the amazing opportunity to meet up with some friends in Arkansas. Friends I have never met...yep, another mom from my Pumpkin Patch friends. Jaynée, her husband Aaron and their sweet daughter Quinlyn met us at Chili's for dinner right outside of Little Rock.

We had so.much.fun. They are amazing company, and we had a blast chatting. Quinlyn was trying desperately to get Dakin to pay attention to her, but he was not taking the bait...I don't know why, as she is not only smart but beautiful...the total package. :)

I was so happy to have finally met this wonderful family. As I have said before, these mommas have been more than friends to me-they are family, and I was so glad to get to hug another member of that family. Can't wait to see them again!

Saturday, July 9, 2011

Trip of a Lifetime

Last weekend we had an unbelievable opportunity to go see my grandmother, who has never met Dakin. He is her only great-grandchild and she has been wanting to see him for a very long time.

So we met up in Sikeston, Missouri, near where I used to live up there. It was a very, very long 9 hour drive up, but Dakin did great, sitting up in his back brace pretty much the entire time. He also watched Cars about three times, but it kept him happy, so...yeah. He watched that movie probably about 15 times over the course of the weekend, but that is another story.

And here we are!! Dakin and Gramma.

Dakin and Aunt Beth.

We had a ton of fun that weekend, mostly sitting around in the hotel room and playing and talking. I hadn't seen my aunt or my grandmother for years, and it was wonderful to get to hug them both again. We also got to go to Lambert's Cafe, a funny place my husband and I always enjoyed going to when we lived there...they throw rolls at you. Amazing rolls...but again, another story. We waited an hour and 45 min to get in, but it is so so worth it, and to kill time we went down to the outlet mall. Dakin had a blast looking around the kitchen store and checking to make sure where Aunt Beth was every few minutes. (He pings people if he can't see them).

I am so glad Dakin finally got to meet Gramma. It was a trip well worth it to see her smile. It was also great to see how far we have come...a few years ago we never would have dreamed we could make a trip like that, especially without a nurse. But it went fabulously.

We love you, Gramma and Aunt Beth!

Thursday, July 7, 2011

Here They Are!!

Here are the beautiful and stunning portraits Azure took of Dakin!! I think these are inexpressibly beautiful photos, and I can not thank her enough for the time she took to come see us. It was a true privilege to have her photograph him. If you haven't yet, go check out her website. I love all her stuff (there is an absolutely breathtaking one of a woman in a scarf...amazing!!) and she is beyond talented! Her boudoir photography is gorgeous as well! I just can't pick a favorite from these...I love them all. **edited to add that my computer freaking hates me and I can't do a link to Azure's site, so check it out here: www.azuremarie.com)