What a weekend!

This weekend was packed with things going on. Seriously packed full. We headed out early Saturday morning to drive for a while for a big surprise for the twins. You know it's going to be a good day when as your heading out of town, you get to see this on one side of the car...

and this on the other...

They had no idea where we were going or what was going on. We arrived at the Boone & Scenic Valley RR & Museum. A train pulled in and I told Parker to look at the engine to see what it was. It took about 5 seconds as the train pulled in..."IT'S THOMAS!!!!" and he let go of my finger and took off running. Payton and I had to catch up!

 We even got to ride on the Thomas! I was a little nervous that Parker wouldn't like the noise of the train, but he did great. Payton was the one that was nervous and sat on my lap for our little ride. Parker wanted the window seat and pointed out everything as we rode by.

Today we had plans of a whole different type. We met our friends from respite care for Mighty Mavs. Two hours of playing in the UNO Field house on campus, complete with swag bags for the kids of school gear and TCBY with all the toppings anyone could ask for. We played soccer, basketball, t-ball, bowling.
A-M-A-Z-I-N-G.

Relay races with a UNO athlete escort. 

 Some of the basketball players lowered this hoop as far as it would go so all the little ones, and anyone in a chair could shoot easier. These two were in heaven. 

Perfectly happy rolling the ball back and forth. As she says "mom, I'm not so good at some of this stuff". 

Yep, on the move and a little blurry...

We got our shot in with Durango! It took some work, special maneuvering and the photographer had to move some of her stuff to make it work, but it worked! Yay!!!

They were in LOVE with playing soccer. They had the soccer players that were there pretty won over. 

One of the players asked if it was ok if they took a group picture with the duo. I said that was fine. Pretty soon I was holding 3 phones for pictures and the ones in the group who didn't have their phones were asking the others to send it to them. I love this picture. The players were great, relaxed, the kids went off and played without me having to be directly involved (which is beyond huge!) without any fear. So many reasons I will be forever grateful for this picture. And despite Payton's wrinkled nose, she was having a great time. 

Parker really wanted to dunk the basketball. One of the basketball players asked if it was ok to pick him up. When I said yes, I warned him about Parker's button, just so it didn't catch him off guard. Parker's such a runt and I knew the players giant hands would go all the way around his waist and I didn't want him caught off guard. After Parker's dunk, he pulled up his shirt and showed off his g-button. Parker told him "I have 2 buttons, see. It makes me special. Lots of my friends have things that make them special. What makes you special?" One of our friends from respite care was near by, and had to walk away so she didn't start crying. 

Thank you UNO, CRCC and everyone else that  made this event happen, giving all these kids a chance to play, and making sure they know what really makes someone special. 

On the move

These past few weeks have been PACKED with stuff. We've been all over the place. Here are our highlights (including a few triumphs).

Two of my all-time favorite art projects that came home from school. I can't get enough of them. Payton made sure to point out to me that her friend, Chris, has a really neat shadow outline because he has his trach on there too and so no one has a shadow outline like him. Love her.

Randomly dressing up like a bee...

Hitting the Labor Day parade where it is totally normal for storm troopers and princesses to be caught walking the streets. There was a little covering the ears for Parker, but nothing horrible. Alot of talking through the loud trucks but a total success.

Touch A Truck - one of our favorite things to do all year! Parker was wwaaayyyy more excited about it than Payton. But their names were written on a snow plow blade that will be cruising the city this winter.

It has been really, really, really, really, really hot here lately. Afternoons are pretty terrible, so the time to go out is in the morning. Last Sunday we cruised around town. They rode in the jogger and I was the manpower (which is why my face is bright red and theirs aren't). In what feels like 200% humidity and in already warm temps, that makes it a pretty good trip. 5.67 miles later, we were all still smiling so I'm guessing that means I can get them to go again with me.

Summer camps are over at school. This weeks topic is dinosaurs. They celebrated with a trip to the zoo for the dinosaur exhibit. All loaded up and ready to go! Payton was excited but Parker was a little nervous. Afterwards he told me "mom, I was bwave and I jus asked my teachers for help when it was jus a wittle bit scawwy."

Another week of over-the-top gorgeous sunrises.

And tonight of course as Payton is explaining that she wants a hot dog for dinner and I explained I didn't have hot dog buns, this is what happened. I had no idea this is where it was going to go...

Saturday there's a big surprise coming. Stay tuned. And Sunday afternoon we'll be doing this...pictures to come! :)
Mighty Mavs

The Parker Update

BIG things have been happening with the little man. Big. Huge. Here's his latest list!

His scope results are in. His EOE is much improved! His esophagus is less inflamed, less swollen, less streaking and his biopsies showed extremely low counts of those cells along his digestive tract. Score!!!
He did great with surgery, spent the day hanging out with me and running a few easy errands afterwards - he does so well with these easy procedures and I'm beyond grateful they don't take him out for a whole day or more. Payton went with us to the appointment and helped talk him through the whole thing since he was a little nervous. We stay with what we're doing for now and will go back in a year and do another scope. We've never had a whole year between follow-ups with anyone.

After almost a year of working with OT for sensory things with noise (mostly) he's made huge progress! School buses that dropped off and picked up kids in the afternoons at respite care were a major source of anxiety, fear and problems for him. With school just starting and the buses being back....we've been problem free. We have to do a lot of talking about all of it to get through it and walk past them, but no major meltdowns. And in other fantastic sensory news, Parker did something else major - he went in a bounce house. Actually inside. We were out at a carnival and they had a small one that was just for little kids - 3 years old and under. The compressor for this one was much quieter and we were outside. There weren't any other kids playing in it. The girl running it agreed to let him take his puppy in with him, and of course he had Payton with him. He didn't stand up or jump around, but he went inside on his own and there were no tears, no fear, no anxiety. "Mom, I did it all by myself. I'm not afraid anymore."

And with our teachers help, Parker was the first kid in their class to be put in potty training bootcamp. He went first and several other kids who were having a hard time with started following along too. It's been good for us to have the extra support and them on board too since they spend all week there. So I'm claiming him potty trained, and about a 50/50 split on nighttime. I will take it! Our biggest issues have been when he's getting tube fed, but we've got it down to a system now. He's doing awesome and gets a little better all the time. Super job buddy!!

Bookends

Last Monday, the kiddos were amazed and talked the entire way to school about how pretty the "color clouds" were. Too pretty not to take a picture...

We ended our week with a trip to the Joslyn museum for a look around and to stop by the new Dr. Seuss exhibit. The exhibit was neat. When I loved even more than the exhibit was a reflection pool out front. You can walk/play in it. Since it's only a few inches of water, it was warm. the kids loved it. I'm in love with these pictures of Payton sitting on the edge of the pool.

I'm keeping my fingers crossed this week starts with perfect pictures book-ending it too. :)

Field of Dreams

Last weekend I got a text from a friend asking if wanted to go to a ball game over the weekend. Since it has been ridiculously not-even-like-summer nice here and there was nothing going on, we drove out and met Kim for a Sunday afternoon game.

We had a great time sitting on the outfield berm and playing, watching the baseball guys. Parker would sit for an entire game. Payton is not so interested. They did really well and made it through the 5th inning when we decided not to push our luck and wander around the park and make our way out.

On the way out, we got to the bullpen and Kim and Parker walked down to the fence and were talking to some of the guys from the Sacramento River Cats. One of the pitchers of them team was down there and he got up, dug around in his bag, and handed Parker a baseball through the fence. Parker has shown everyone he can think of, taken it to school to show off, and slept with it. Thanks guys - you made his month!

And to carry on with his baseball theme, at lunch yesterday, he was totally quiet. He ate his cheeseburger and watch the little league world series on the t.v. up on the wall. He was happy as can be. I'm seeing some t-ball in my future next summer. :)

Parker's Next Round

As your making out your to-do lists for the week, if Wednesday is looking a little light for you, we'd love if prayers for Parker could get added to it. The little man will be going in for his latest Esophagogastroduodenoscopy with biopsies for his eosinophilic esophagitis - or an EGD for his EOE. Such big words for such a tiny boy! We've done his a handful of times before so I'm not worried, but I'm hoping for a quick day in and out. Boys Town is the place to send them, Wednesday morning is the time. We'll keep y'all updated. And thank you as always!