Trying to figure out how to arrange a babysitter for our boys is a real challenge. We don’t have an answer. So Bill and I went to see the new Star Wars movie today and left the boys at home. It is good to not worry about avoiding spoilers so much now. We both enjoyed the film, even though it pushed a little too hard on the “nostalgia button”.

The boys are getting over the cold part II. It has been runny noses and extra suctions, but nothing too bad. They will hopefully be healthy soon. We did go to the aquarium to try to get them out of the house for a while.

This is a fish they call “Puffer Buddy”.

Trevor says they are making lobster soup. Some for me please!

Trevor in a bubble

What? Turtle butt

Shark!

They have a playground at the end. The boys played until Brendan needed oxygen and we went home.

You didn’t honestly believe that we left the boys home alone? We had to go see the movie in shifts. I went to a morning show while Bill stayed home with the boys and Bill went in the afternoon while we went to the aquarium. Such is the way of our life now.

And for a brief rant about babysitting: It is more complicated than most people assume. We do have respite care benefits provided by Brendan’s disability insurance and we could get a nurse. The nurse is not legally allowed to care for Trevor, so we would have to have a second person watching him.
If we called for a nurse, they would send us someone we have never met before. Or maybe we would interview them ahead of time and they would come by. They may have dealt with trachs before, but most of them have not ever seen a case like Brendan.

What happened today when Bill was home with them is that Brendan and Trevor had a fight about some Lego figure. Trevor got frustrated and took it out on Brendan by yanking his oxygen line. Brendan’s trach came out. Ever since the failed decannulations, trach removal is a big deal. Brendan shrieks and fights and panics about having it put back in. It takes a monumental effort and a practiced hand to get it put back. Brendan starts to turn blue from screaming.

If a brand new nurse was working (some of the ones that have been sent out have never done a trach change!), and she could not pin him down and get the trach in, she would call 911. It would just go downhill from there. Even the nurses and doctors in the emergency rooms have to ask us a million questions to understand Brendan. What if he went in without us?

It makes my head throb and my stomach turn. So we see movies in shifts.

I hate to even write this, but Brendan is sick again. Last night he just started with the super runny nose and dripping trach with lots of coughing. So far only a little oxygen is needed. I hope this is a different, milder virus that will be gone soon and not a relapse of the nasty one from December.

This week I have scheduled no less than 12 doctor and dentist appointments for me and the boys. It is going to be a busy time.

The first one off the list was Trevor at the dentist!

He got a full cleaning and exam and was such an awesome boy about it. He only got slightly upset at the taste of the gritty toothpaste, but that was over fast and he didn’t cry.

I was very proud of him for being so still, quiet, and cooperative, especially since I took Brendan along to watch the whole thing. Brendan’s appointment is next week and it is going to be the antithesis of this appointment.

But this dentist has a playground!

I took the boys to Toys’R’Us for a little reward afterwards. When I took the boys to the car, Brendan was reaching back in the shopping cart and trying to grab Trevor’s bag. A little pushing and noise followed until Trevor looks Brendan right in the eyes and says, “Brendan!! You are pushing my limits!!!”

I almost fell over. Never a dull moment. 🙂

This weekend has been an exciting adventure to start the New Year. We have enjoyed the 3-day weekend with Bill being home from work. We went to bed early on New Year’s Eve. And slept in! Yesterday, we drove up north to the Tonto Fish Hatchery to feed the trout. We planned to do some pictures in the woods, but Brendan was feeling a little car sick so we came home instead.

Today, we had a brand new adventure. The city of Mesa has built a 35 acre bike park with trails, ramps, jumps, and bowls all in a very natural desert setting – with really nice bathrooms!

The boys were so excited. Brendan went the entire 3/4 mile perimeter trail with 11% grades. He didn’t want to stop once, and he never asked to be carried. Both boys wiped out plenty but got right back up. They amazed me.

This is a little “skills” area with lumps and bowls in very smooth dirt. I could not believe how easily both boys handled the slopes. They were naturals, and Brendan is fearless sometimes!!

Bike see-saw? Yeah, Brendan could not be stopped!

Trevor rode it like a pro.

We had a lunch outside in 70 degree sunshine, then spent some time at the car wash de-mudding the van from our forest adventure. We are sorry this weekend has to end!