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!

We had a special HopeKids event to attend today. We went to a place called “Butterfly Wonderland”.

It starts out with a 3D movie that we skipped. Then you enter the “Emergence Gallery” where you see newly emerging butterflies.

From there you head in to a large atrium where there are thousands of butterflies flying around everywhere! You have to watch where you step.

We had been telling the boys about this trip, and all Trevor wanted is for the butterflies to land on him to “say hi”. He did not realize that he was just too wiggly.

He really loved watching them, there were different ones everywhere you looked.

They just never landed on him!

As I expected, Brendan was not so happy about the butterflies. He liked it at first until they started flapping too close to him. He did really like the big Koi pond.

This butterfly really liked Bill’s shoulder.

Trevor was super jealous!

The boys liked the fruit dishes covered in butterflies.

Once you leave the atrium, there is a large beehive. Brendan loved watching the bees come through the tube from outside to get to their hive.

There was a nice aquarium room with some beautiful tanks, and some small stingrays for petting.

This place is just the beginning of a tremendously enormous tourist megaplex. It will have a giant Aquarium, Imax theater, shopping, restaurants, Ripley’s museum and more developing over the next few years.

We really enjoyed the chance to check it out with the HopeKids group! The boys had a blast.