When I looked at the clock and it was 7PM and time to put Trevor to bed, I could hardly believe it. We did so much today that the day just flew by!

Trevor and I started the day early with the rest of our grocery shopping. There was a fire engine in front of the store that had Trevor awe struck. We had to walk over and look at it. The firemen were all inside the store so we didn’t get to meet anybody.

When I got home, Bill dashed off for a bunch of errands and I got the boys through lunch and put down for naps. I forgot how much Trevor loves tuna salad. I haven’t made it for him in a while. He is getting better at eating out of bowls and not just throwing them, doesn’t he just look like a pro.

Neither of the boys were feeling like themselves today. Brendan has had his sats hanging a bit lower and needed more suctioning. His body has some big adjustments to make and he is doing so well. I hope he bounces back quickly. Trevor has been cranky and rubbing his face like he has more teeth coming in.

After nap time, we decided to go to the toy store to spend the money the boys got in their Easter cards. Thanks Aunt Letty and Uncle Rich! Trevor picked out something new, but he didn’t quite stay within his budget.

Brendan has to come out to see what all the commotion is about.

Brendan is showing off his new food truck.

So the feeding pump sits right in the bottom, the bag of formula hangs in black cooler bag. The black and white strap is normally belted around Brendan’s waist and it is a little bit shorter than the feeding line. When he crawls away, he can drag his little truck instead of reaching the end of the line and having it pull at his tummy. He just got it yesterday and it has already been such a help! Thanks so much to our friend Tim who engineered this little contraption.

Now both boys are ready to help Daddy

Trevor is going to put it together

Trevor isn’t even sure what it is for yet, he just knows that it is new and it is cool! Brendan is just playing with one of the guys that came with it.

Then Bill pours in a bag of sand.

Trevor LOVED the sand and dirt at the park so I knew he would be all over this.

I made a nice dinner all during The Crabbing Hour and didn’t hear a peep. Brendan did not want to touch the sand at all but he liked the little guys from the playset and he really enjoyed watching what Trevor was doing. Trevor and Daddy had fun.

The sandbox will actually live on the front patio where the overflow sand can just be swept into the cracks between the pavers. It will replace the sand that erodes away from there, so it is a win-win. Easy clean up, patio maintenance.

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!