I am writing today’s post early because I have taken too many pictures already for one day, both boys are napping and I don’t feel like doing chores instead!

Brendan had a great night off of his ventilator. We knew that he would! We decided it would be wonderful to clear up the clutter of his corner and put the vent in the other room. Here is the before.

And “Alakazam!” says Trevor and the work is done!

We are relocating the vent and stand and one of the big liquid oxygen tanks. We will keep the vent for a while just in case. Since Brendan is on lower oxygen levels now, he does not go through the three tanks between refills. So the little one now lives at the end of the hall so that it can be a new “base station” for Brendan when we take him to that part of the house.

Ahh! Much better! That thing left on the floor is the pump that runs Brendan’s mist collar. It is loud and puts off a lot of heat, but we will deal with it versus having a ventilator!

Trevor thinks he is helping

The continuing saga of Brendan mobility and tube/wire management. He really gets around.

Trevor just naturally steps over the tubes when he is walking around. Or he tries to just plow through.

He actually picked the Chomp n Clack up completely off the ground and set it over the tubes so he could keep going.

A little yoga class out on the patio. (and proof that I still dress both my boys!)

Trevor had to go with me to Sam’s Club this morning. We needed more boxes of diapers and have moved in to size 5’s. Size 5 used to seem so huge!

Sweet blue-eyes, triumphant!

He actually signed ‘please’ in the store without prompting and there was only one jug left. What was a mommy to do? (He is lucky, I like these jugs for toy storage and we could use another one!)
Good thing he learned how to open the jugs himself. Now we have to keep them hidden. If he sees the jug, he signs ‘more’ and says “ba” for ball.

Trevor wins

He doesn’t get junk food for lunch, today he also had … mac & cheese and swedish meatballs … ok, today isn’t a good example. He also ate grapes!

I offered some cheese balls to Brendan and he just shook his head no-no-no! He would rather play outside!

We hope the rest of the day goes just as well!

I don’t even know where to start today! I hope I remember everything I wanted to write.

We started with breakfast as usual, but we had a doctor’s appointment today so we had to figure out the day.

We were getting everything packed and Brendan was just showing off what he can do. He got up like that all by himself.

We had an 11am appointment with pulmonology at the hospital clinic. Brendan got all dressed up and even put on shoes! He couldn’t help but wave them around and also try to bite them.

The appointment was awesome! She was really impressed with Brendan and he has some big changes ahead. First, tonight is going to be the first night in just over a year that Brendan will NOT be on a ventilator!! A year ago on the 25th, Brendan got intubated after he failed to breathe on his own after his open heart surgery. A year ago on the 27th, he got his trach so that he could be safely on the ventilator. Over the course of this whole year, he has grown so well and worked so hard to sprint from the vent. He might be ready to leave it behind for good!
He is going from using it only at night for 6-8 hrs to completely off starting tonight. I can’t believe this day is here!

Even better news, without the ventilator, there is no need for Brendan to have a trach. His doctor wants to push aggressively to get the trach out. He now has a six month plan (or less) toward permanent decannulation. It is a steep mountain to climb for him, it will be tough and there are lots of processes along the way. It is all up to Brendan, but we could celebrate his 2nd birthday without a trach!

It is all moving toward the wireless model of Brendan, which is good because we keep running in to trouble with his new mobility!

Trevor and Daddy had to drive me and Brendan to the appointment. Because of the timing of everything, Trevor had to have a picnic lunch in the car. He had a good time, he likes climbing all over the car. When we got home, Trevor took a nice nap and Brendan did not!
Then it was outside to play. Trevor loves to throw balls now, especially over the wall.

He entertains Brendan with antics while Brendan wears the speaking valve. He wore it for a total of two hours today including one stretch of an hour and 15 minutes non stop!

Brendan finally figured out he can crawl down the step to get outside. He keeps getting stronger!

I thought I had taken the most adorable video ever of Trevor running around and squealing at the dogs and Brendan squealing at Trevor squealing. We were laughing so hard, it was so cute! But when I went to download everything, it doesn’t exist on the camera. I must not have been recording after all.
This video is also adorable and has lots of cute Brendan making sounds. He is so funny, he just cracks me up.

We can’t wait to see how Brendan does tonight. I am just in disbelief that all of the medical equipment is slowly heading out the door. There is a glimmer at the end of the tunnel!

Simple stay at home days are good. There was a monthly ventilator inspection today but that is quick and they didn’t come during nap time this time.

Trevor has got excellent hearing and he knows long before me when the garbage/recycle truck is coming down the street and he gets anxious to go outside. He is so eager to see the truck working that I actually got him to sign “please” before I took him out the front door.
There is that truck coming down the street. He loves seeing it lift the big cans to dump them.

Of course, once it gets to our house, he has to run back to the patio because it is so big and loud.

He also likes to get the mail each day.

Oh look, he got a letter

The timing today was perfect. While we were outside, the mailman came down the street. So Trevor got to see the mail truck and meet the mailman in person. He was really friendly and squatted down to Trevor’s level and handed him the mail. Trevor was impressed.

We also saw a furniture delivery truck go by and the driver beeped the horn for us. It was like a big outing for Trevor all on the driveway!

We enjoyed the rest of the morning outside.

Brendan’s PT would be impressed. He was trying to figure out how to crawl down the step to get outside. Instead, he got both feet under him and got his butt in the air. This was the skill he was practicing this week in therapy as a move to standing up on his own.

Speaking of impressed, the day just kept getting better. I gave both boys chicken bones with lunch. Trevor loved it and I had to watch him closely. Brendan touched his only long enough to throw it on the floor.

He wouldn’t play with chicken but he did EAT some cheerios!! Really ate them. You can see them in there along with his 13th tooth coming in! He also ate six good bites of green beans.

Trevor’s little apprentice is a fast learner

Keeper of the cups

And as if eating Cheerios wasn’t enough for today, something special is happening in this picture too.

You can’t see it unless you know just what to look for. Brendan is wearing his speaking valve and he blew his time record AWAY. He wore the valve non stop for FORTY-FOUR minutes!!!!!!!!!!!!
The last few days, he wore it for 2 minutes at a time. Then yesterday he did 5 minutes. Today I was hoping to get 5 again but he was doing so well and just going on about his playtime as if nothing was different so I left it and let the timer run.
This is such an encouraging thing.

Can I get a “Yay! Brendan!!!!”? 🙂
Yay! Trevor too for being an awesome role model and such a good boy.