Saturday, October 21, 2017

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.


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!

Thursday, February 2, 2017

Monday, October 31, 2016

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. :)








Sunday, October 23, 2016

the fair!

We went to the fair last weekend and had a great time. Matt's sister, brother in law, niece, and nephews were in town from NY. It was great to have them down and to get to share one of our favorite things of the year with them.

And this one is from a date night Matt and I got the other night, courtesy of my mom. We went to dinner and to the mall to get smiley face cookies. Because we're mature grown ups.