joey the puppy

Back in October we got a puppy. YUP.

We had gone to the flea market with my MawMaw to see about some vintage NASCAR stuff for Jonah. "Take your money," I told the boys. "You never know what you might find." (FORESHADOWING)

We got there and the NASCAR shop had closed down. We kept wandering around and going into to different stores. I remember going to a little store that had popcorn and expired (BUT SUPER ON SALE!) individually sized bags of chips. MawMaw gets real excited about these. "They're so fresh!" she says.

After getting ALL THE CHIPS and popcorn, we walked down to another store that had freaky Halloween stuff. I don't love freaky Halloween stuff, but alas, there was a sign on the door that advertised, "Shih Tzu Puppies." Well, I had already been feeling like Deac was lonely (read: I was lonely), and that he needed a playmate (read: I needed a playmate.)

And then we walked in and saw this and I couldn't even.

And neither could Gideon and Jonah.

But mostly it was me. (Also, who was going to rescue him from that freaky bat?)

So I called Matt, explained the situation and that "Deac really needs a playmate and the boys really want one and they have their money and they want to pay for him and I'll clean up all the poop and of course it's no big deal and it's all going to be fine." And then he said his version of yes, which was something along the lines of, "Okay, but I'm seriously not cleaning up the poop, and this is on you guys, and if it goes badly, it's not on me, and obviously I have to say yes, because if I don't, you're all going to be upset with me." 

WHICH SOUNDED LIKE A CONFIDENT "OF COURSE, BABE. WHATEVER YOU WANT" TO ME.

So we got a cute puppy.

And Jonah named him Joey, after his favorite race car driver and friend, Joey Logano.

I mean, honestly. What other option was there really?

Funny twist to the story. Joey may have some Shih Tzu in him, but as he's grown, we've realized he's definitely NOT a Shih Tzu. He looks like he may have some Pekingese in him. And Pekingeses shed. Which is not great for EB. But now we all love him (even Matt), and he's Jonah's best friend, and it is what it is, and we're mostly okay with it. Except for Granny.

But really, the whole point of this post is that we had to get Joe Joe fixed yesterday, and he messed with his sutures, so now he has to wear The Cone of Shame.

And he hates it so much. (Those raindrops on his cone are symbolic of the internal tears he's crying.)

He whines every time I leave the room. So now I'm carrying my puppy around with me every where I go.

And that's why I haven't folded the laundry.

The End.

jonah rockin' the xylophone

Jonah did a week at camp a couple of weeks ago with his music teacher. Mike is so cool, and at camp, the kids form a band and work to compose, record, and create music videos for two original songs. Here are Jonah's band's two original pieces. I'm so stinkin' proud of him.

Whatever you do, don't miss the end of the second song. He is TOO MUCH.





Mike at Professor B Studios is the BEST, and can play and teach pretty much any instrument, so if you are local, you should check him out.

I'm so thankful that my sweet boy has his own thing now. He's such a great cheerleader for his little brother at t-ball games, but this seems to be something of his own he can really enjoy. And I may be biased, but he rocks that xylophone. He only started back in March!

Also, can you even stand him in the aviators and skinny jeans??? Because I absolutely cannot.

pumpkin patch (and catching up)!

I'm not sure exactly what it is about the Fall that inspires me to blog, but here it is a year later and here I am with a post.

The boys are doing well. Gideon turned five in August and Jonah is 8 and a half. DON'T FORGET THE HALF. Jonah's EB is getting worse, I'd say, although it's tough to measure that kind of thing. His arms and legs are pretty much a disaster all the time, and we're in a vicious cycle. Itch, Scratch, Blister, Heal, Itch, Scratch, Blister, Repeat. And of course, all of his wounds are in different parts of this cycle, so he's basically in rough shape all the time. He is still one of the happiest kids ever though, but I definitely think things are starting to get to him more. Not that things are significantly worse, but pain, tiredness, not being able to participate in everything he wants etc just seem to affect his mood more than they used to. But part of that is that he's getting older and moodier. And mouthier. :)

He and Gideon have a love/hate relationship like most brothers do. They can be the best of friends and the worst of enemies. Gideon is into all things nerf guns, wrestling, and super heroes. Jonah is all about NASCAR (more posts coming on that soon!) and still loves car shows, car videos on Youtube, and talking cars or racing with anyone who will listen.

DID YOU KNOW THAT WILLIAM BYRON WILL BE DRIVING THE 24 CAR NEXT YEAR?

Well, know you do. You're welcome. 

We have just ordered a new tub for Jonah that I am super excited about. It is called the MicroSilk tub, and it should help his skin a lot. It has these tiny micro bubbles that can basically gently exfoliate his skin, fight bacteria in his wounds, super-hydrate his skin, and aid in healing. Several EB families have tried them with good results. I will try ANYTHING to relieve his itching.  It should be here on Friday. I'm sure it will take us a while to get it installed and to reconstruct around it (I love you, Dad), but I'm so pumped. You can read more about it here if you're curious. I'll keep you guys posted!!!

We went to the pumpkin patch today, and it is always one my favorite places to get pictures of the boys each year. I love this time of year, and since it's finally decided to NOT be 85 degrees every day, maybe the leaves will actually start turning. We had a good time, and Gideon was especially excited about picking out at least one "punkin" of each color. "I want to carve one punkin and paint one punkin. Look at this red punkin mom. Ooooooh look! One with bumps!"

Here are the pics. Just can't believe how big they're both getting.

I call this one - "Take one more picture of me and see what happens."

My hair was tickling him, and we got the giggles.

I'll try to post soon about our TV and Nascar adventures. A lot of crazy (fun!) things have happened that I want to record here. Life is crazy! Thank you for still being here with us!

article on Jonah on goodhousekeeping.com

Goodhousekeeping.com did a story on Jonah this week, from my perspective. It's a good read. :)

http://www.goodhousekeeping.com/health/a42608/epidermolysis-bullosa-jonah-williams/

happy halloween!

They practiced tonight before going out. 

"Make sure you get the whole thing, Mom." (That was a big "blow-up," as Gideon calls them.)

"Can I hug that ghost because he is sad."

And here are the "real camera" ones.

And from all the years past. :)

2009

2010

2011

2012

2013

2014

2015