Sunday, September 2, 2018

No one fights alone

In this family, no one fights alone. It is easy to get caught up in Jonathan’s diagnosis and special needs but his diagnosis doesn’t just effect him but all my other kids wear his diagnosis and fights along side him. September is Chiari Awareness month and as I prepare to head to CA for Jonathan’s decompression surgery let’s not forget the other kids left home who are fighting also. #chiarimalformation #chiariawareness #tminus3daysuntilsurgery

Thursday, August 30, 2018

A Chiari Dinosaur

To help Jonathan understand what is happening, Nana made him a special dinosaur that had his surgery date, incision, brain, and even hospital bracelet. Jonathan loves it! #chiarimalformation #chiariawareness #zipperhead #tminus6daysuntilsurgery

In essence, the chiari decompression surgery is to make more room for the brain (the cerebellum, to be exact) at the base of the skull. The surgery also relieves pressure on the spinal column and makes the flow of spinal fluid better.

And speaking of dinos, this indoraptor headed straight for Jonny's OJ this morning.

Wednesday, August 29, 2018

Theatre Kid's Life

Does this sound familiar?:

I can't, I have auditions.
I can't, I have callbacks.
I can't, I have first reading.
I can't, I have rehearsal.
I can't, I have vocals.
I can't, I have choreo.
I can't, it's tech week.
I can't, it's hell week.
I can't, it's final dress.
I can't, it's opening night.
I can't, it's my last performance.
I can't, I have strike.
I can't, I have a cast party.
I can't, I have auditions.

Wednesday, August 22, 2018

Four Rockies Baseballs

Quite a night at Coors Field with the Colorado Rockies (and San Diego Padres). As we learned from Zach and Rebecca, get there as early as possible (usually 2 hours before game time is when the gates open) and enjoy the stadium, mostly batting practice if you're into shagging flies. Well this time, it worked. In spades. We came home with four baseballs, three from batting practice and one a foul ball in our direction. There were actually five, but Matteo gave that 5th one to a littler boy who just didn't have the height or the reach to compete in the stands with everyone else.

Here's how Tracy tells the story of the ball Jonathan got: "Happy moments in the life of a Chiari Warrior. Last night during batting practice this guy, Matthew, was trying to catch a ball like everyone else. A ball came flying over head and he scaled the bleachers like a bad a**, jumping over them like nothing and caught the ball, he 100% earned that ball but instead of keeping it he turned around, saw Jonathan watching, and gave it to him. Jonathan beamed from ear to ear because he had a BALL, like his brothers. We asked Matthew to sign the ball and he thought we were crazy, but he did!!! Also, he was representing West Point [a graduate], I mean, the dude was great and made this little guy's day. #chiarimalformation #chiarimalformationawareness #tminus13daysuntilsurgery "

Tracy snagged Jonathan's second ball when a foul ball soared into our section of the stands about 10 seats down from David and AJ. It was going pretty good and got through everyone who was there, bounced up into the wheelchair section where Jonathan and Tracy were, and Tracy chased it down. The kid is a ball magnet.

Well, so is Matteo. He snagged the other three balls caught during batting practice, let AJ get one, gave one to the little boy (mentioned earlier), and kept one.

Rockies won 6-2. BTW, club level is the cat's meow.

You can take us out to the ballpark any time!

Cracker Jack is a big deal, too.

Lexi's First Day of Preschool

Big day for Lexi! I think she was ready to walk out the door about 6:30am! (We don't leave until 7:50am, generally.) And it just so happened Sam got in last night for a visit. All the photos are here.

Note Matteo going over the fence in the background.

Always nice to have a big brother.

And in she goes...

Nana couldn't stop laughing at the Starbucks drive-thru ordering spot.
She picked up Tracy and Papa at school after everyone was safely inside.

Sunday, August 19, 2018

Fish Bowling with the Johnsons

Our final activity during Zach and Rebecca's Colorado visit was taking the whole fam damily to the Fish Bowl (just down the street by Bass Pro). Always a hoot! All the photos are here (not so great, very low light).

Friday, August 17, 2018


Those clouds were swirling! I was thinking tornado any moment.

For about an hour.

Our neighbor's "creek bed" ran strong.