Lucas Camilo

Last Friday Lucas had another surgery, his second in just over a month. This time the main focus was extracting teeth, but as long as he was under anesthesia the surgeons also went ahead and replaced his ear tubes. We actually didn’t know until 24 hours before check-in whether it was actually going to happen because our insurance denied the dental portion of the procedure. After lots of calls and messages and unhelpful conversations we finally figured out that it was necessary to submit the paperwork to a separate dental subsidiary of our main insurance carrier (would have been nice if they said that in the denial letter!) and that pre-authorization wasn’t required. Sigh. Someday we’ll elect a socialist and have a single-payer healthcare system… but until then I guess we’ll keep spending hours a month dealing with bullshit private insurance companies.

Anyway, we assumed the surgery was relatively straightforward and so weren’t too worried about it. But then it took almost two hours, and we found out later why: they extracted a total of 13 TEETH! Myotubular myopathy has effected Lucas’s mouth in funky ways, including having adult teeth come in early and baby teeth not fall out. So in order to avoid painful crowding they had to remove some teeth… we just didn’t realize quite how many.

Meanwhile, he had the small tubes in his ears replaced. They help drain fluid that builds up behind the ear, thereby preventing hearing loss. We’re happy to not have Lucas yelling “what?!?” as often now that the procedure is out of the way.

Over the weekend Lucas was definitely in recovery mode, resting a lot and hardly getting up in his wheelchair to go out. He also had a lot of swelling in one side of his face, leading to his temporary nickname, “the half squirrel.”

By Monday morning Lucas was well enough to head off to camp. Here’s his report so far…

Aquarium camp day 3

This week I am at camp at the aquarium.

Yesterday each of us made puzzle pieces of a six-gill shark.

Today we put them together to make a very complicated six gill shark puzzle.

I looked at phytoplankton and zooplankton on video.

Everyone else looked at plankton under a microscope.

We saw dogfish in the Underwater Dome.

A marine biologist talked to us about six gill sharks.

It’s nice to be back home after a long road trip.

Raven is really happy to see us.

We’re thinking about going to Canada for our RV trip next summer.

I am looking forward to aquarium camp next week.

I’m also looking forward to playgarden camp with Ida.

My Top 5 things about the road trip:

1 Crater Lake trolley

2 The Harris’s Hawk

3 The logging museum

4 Mt. Hood

5 Seeing Grace the swan and her cygnets

Day 7

Today we went on the best hike ever.

It was so beautiful.

We saw salmon through a window at the bottom of the Salmon River.

We went on a boardwalk over Wildwood Wetland.

At the Sandy Music Festival

We went to a music festival in a town called Sandy and saw a band called Fiddlesticks.

They were really good.

It’s the last night of sleeping in the RV.

I’m happy because we will finally see Raven (our cat), but sad because I LOVE RV trips.

The blogger at work

Day 5

We were at Grandma and Gary’s cabin and went the Sunriver Nature Center.

We saw an owl show and then got to see Grace, a swan and her cygnets up close.

Grace has her own true story. It’s a book about how she was rescued.

Day 6

Today we went to Mount Hood.

It was amazing and snowy.

We made up jokes about mountains.

I talked to Mount Hood Hal-style. Like talking to things that cant talk back. I said, “Hi Mount Hood, its me Lucas, nice to meet you!” And “You are mountainy and hoody, all at the same time.” And then when we left “Bye Mount Hood, nice to meet you, send me a postcard!” Then we did a pretend performance together and Ida was silly.

We came back to the RV park and went on a nice walk. We saw our 9^th body of water, Salmon River.

Day 4 of the Road Trip

Today we went the high desert museum near Bend, Oregon.

We saw lots of reptiles and birds.

We even saw the endangered Idagle (That’s a rare wild Ida perched in its nest.)

There was a reptile show at the museum.

Then there was a really cute otter show outside.

OK, here’s the special part.

There was a birds of prey show that I couldn’t go to because it had bumpy terrain on the way that wasn’t wheelchair accessible. Kelsey the person who did the reptile show, wasn’t happy about the fact that I couldn’t go to the birds of prey show so she made a special show just for us (well, mainly for me but also for all of us).

There was a skunk and a bearded dragon.

But the best animal was the Harris’s Hawk.

It was huge. I could feel the wind of it’s wings as it flew over my head.

Our road trip so far.

Day 1:

We started off at an RV campsite and then went to Crater Lake.

I have a road trip playlist that our friends, Daniella, Gabe, Rafi and Laylah loved (except that Daniella didn’t like the heavy metal section)

Tomorrow we are going on a 2 hour trolley ride.

Day 2:

Rafi and Laylah like rock music too. We were listening to Bruce Springsteen, AC/DC, Imagine Dragons and Queen.

The Crater Lake trolley ride was amazing especially Crater Lake (of course!)

It was so blue, long, clear and deep.

We learned that a volcano named Mount Mazama erupted 7,000 years ago to form Wizard Island.

I used a ramp to get into the trolley. (But then they had to lift me in and out a couple times too.)

Day 3:

After we left the RV park this morning we went to a logging museum. It showed how they cut down these giant trees and ox pulled the trees on a huge cart. We also saw a really old locomotive.

Then we went to a restaurant for lunch and I watched David Attenburough while everyone ate. Then we said bye to our friends.

Now we are at my Gramma and Gary’s cabin in Sun River.

First off, thanks everyone for your support after Krista posted the story of Lucas getting left behind (again) for the school field trip.  We’ve heard back from folks at the district and we’re learning more about what went wrong specifically on June 18, and more generally what needs fixing district-wide.

On Saturday we will load up the RV and head out for our annual summer road trip. Here’s Lucas’s preview:

Going on a road trip

Next week we are going on a road trip.
We’re going to Crater Lake, Mount Hood and Bend, Oregon.
I have a road trip playlist already.
We’re going with our friends Daniela, Gabe, Rafi and Lila.
We’re going on a trolly.
I will do more blogging on the road.

It’s been two years since we rented a wheelchair accessible RV. There’s only one place in North America that rents them and it happens to be in Vancouver BC… which means I have to drive up to Vancouver to pick up the vehicle and then drive back to Seattle to get the rest of the crew. This time around we rented the A-Class Motorhome (see picture) which is 3 feet longer than the one we got in 2016 and 2017. Should be interesting!!