So far, Brendan is doing well with no vent at night.

Yesterday, we went to get Trevor some new sneakers. He picked out “Star Wars Lightsaber Duel” shoes. One shoe flashes a blue saber, and the other is red. He could not be swayed, they are pretty cool shoes.

Today, we ran errands all day after Brendan’s school in the morning.
Then we hit the park to fly a kite. It is a shame that the wind was blowing directly into the direction of the setting sun. It made it hard to watch the kite.
Brendan decided that he didn’t like the sun and the kite so only Trevor stayed to fly it. Brendan went to the playground.

It is very hard to take a selfie with a giant, heavy camera.

Brendan was worn out and just wanted to swing

Playground power nap

Ready to play again

He wants to know how Trevor does it

I tried to get on the ground for cute shots of Trevor. I got sand in the face and tackled by a Brendan! (this photo showcases the knot on his forehead where he bonked his head while roughhousing with Trevor)

The boys love Cherry Limeades from Sonic!

Brendan has done well so far off of the vent at night. He still needs a little oxygen while sleeping. The days with no nurse have gone well too. It is not any more or less busy or exhausting, it is just different.

Trevor is always keen to help build things. He loves to work in the garage.

Trevor woke up this morning crying and saying that he wanted to help me sew and that I did it without him. He must have been dreaming!
After lunch today, we got out the sewing machine and made this owl pillowcase. Trevor did the pedal and pushed the buttons and I guided the fabric.

Brendan was excited about the moon owl pillow and it immediately led to wrestling. Again.

We are doing the sleep study tonight. This machine is measuring numerous things, but primarily the study is about levels of CO2 in his exhale.

Brendan has this contraption on his trach. It might make sleeping difficult.

For some reason, the boys want to spend a significant amount of the day playing with Legos.

Today might be a major milestone in Brendan’s journey. We have tried this road before and it didn’t work out. The ventilator is turned off tonight! Maybe it has seen its last usage.

We visited Brendan’s pulmonologist today for his quarterly checkup. She sent us home with some equipment to run our own sleep study on him at home to verify that he is doing well without the vent. So far tonight, his numbers are all-star.

There is still much that is up in the air. Brendan will need a formal sleep study done at the hospital where he will have his trach capped. His pulmonologist, cardiologist, and ENT surgeon have to work together to determine whether Brendan will need to have his tonsils and adenoids removed. A bronchoscopy might be in the near future.

We have to take it all one day at a time and use the data we gather to help us determine the next step. In the end, we are hoping that this will lead to trach removal before the summer is gone.

Go, Brendan, Go!