I swear it feels like I just wrote about doing a trach tube change yesterday. They get done once a week but the time sure does fly, it was that time again. In order to give an idea of what Brendan goes through, Bill decided to set up a time lapse camera. This whole process took about 32 minutes, but here you have it in 1 minute 17 seconds.

And yes, he gets a bath and trach maintenance on an ironing board. We set it up like a workstation near his crib because it allows us to do everything at a perfect height right near all of the supplies and we don’t have to move his equipment. It is a strong old board and it is nice and sturdy!
We will try to set up a camera again next week to catch a better view of the actual change. I think it will be fascinating for Brendan later to see what it was like.

Brendan and Trevor like to have conversations now at meal time.

And Trevor still likes to shake the rings for his brother.

Trevor got to try some pancake today

He is getting a little better with his pincer control

“Are you serious, where is the syrup??!”

Brendan got to play with pancake too. But he gets larger pieces. (no eating or biting occurred at all)

Trevor sings an emotional rock ballad to his pancake, fist clenched to hit the power note. He hopes to sell the song to The Bearded One’s band so that it can be a platinum hit.

The day wasn’t all smiles though. Poor Trevor is really struggling with those top two teeth. I am glad they are coming in at the same time. Add a little constipation to the battle and we had one very unhappy Trevor tonight. We are going to back off the solids/new foods again for a bit and let his tummy settle. Good thing we have ice cubes.

A little ibuprofen,a bottle, and a bedtime story with Daddy before bed helped him relax.

Brendan did 3hrs and 15 minutes of sprint today and did GREAT. Tomorrow he gets to try 4hrs. At the end of the week doing 4hrs, we get to call the pulmonologist for the next steps!

There is nothing real eventful to report today, it was all routine. The boys spent about an hour and a half on video chat so that they could attend Aunt Shannon’s baby shower in Illinois. They were mesmerized by all of the commotion and people.

Brendan did his 3hr sprint today like a champion. Starting Monday, he will move up to 4hrs and we will see how he does! It is very exciting. Our goal is still to have him off of the ventilator all day long (12hrs) by his birthday in October. Of course, surgery and hospital stay may set us back some. I believe he can do it!

It is hard to sprint when you are being attacked by a 5-legged octopus

This lobster is seriously adorable, but it is no match for Brendan’s “I know I am cute” face

Toes are more fun than lobsters

While Brendan was distracted with new sea life, Trevor stole Jacque. This is his “I didn’t do it” face

Trevor in his firetruck pajama pants, showing off his fireman physique. He should do calendars.

While the boys slept this afternoon, I managed to get in a hour nap. Hopefully it gets me through tonight. We have a new nurse starting Monday morning and will be interviewing one next week to cover our night shifts. 17 days until surgery day.

Today was all about attitudes!! It started out like a nice day. The boys played together and watched some Yo Gabba Gabba. But then Bill had to go lock himself in the back room in order to take a conference call with no disturbances and that is when the real fun started.

High noon. Trevor gets buckled in to his high chair, bib on, tray loaded with puffs.
“See these teeth? They are ready for puff annihilation”

Brendan has speech therapy coming at 12:30 so I don’t want to load him in his high chair too early or he tires of it. So I put him in a bouncy seat. All is well. I try to step in to the kitchen to make Trevor’s food. Brendan cries. I pat him and give him different toys and all is well. Until I talk to Trevor. Brendan cries. I try to go to the kitchen to get the food again, Brendan has a melt down. I pick him up until he is breathing again, and put him back. I keep giving Trevor more puffs to tame the hungry belly.
I get the food. Brendan continues to pitch a fit so I let him. As long as his sats are fine and his breathing is OK, he needs to learn to cry it out too. He kicks and cries but Trevor needs his lunch. Three bites in, what is that smell?

Brendan got his little fingers under the edge of the tape that holds the base of his ostomy bag to his belly. He then ripped back the whole thing so that the stoma was exposed, the poop was leaking and the skin was angry and red from the adhesive ripping off. He sticks his hand under and gets poop all over his fingers which he then tries to smear on the tape on his face.

Lunch stops. Distribute more puffs or Trevor will cry. Spread out emergency ostomy changing station and work on cleaning up the poop monster. He wasn’t happy about it.

I got him all cleaned up, about half of a box of wipes later. He was smiling. I am trying to get all the poop wipes picked up and the doorbell rings. It is the therapist. I let her in and she helps me to get Brendan’s chair ready. He cries when he sees her. This time, she decided to step back and just play with him without making him feel like she was going to force him to eat. She brought food and toys for him to just have fun.
Dry rotini, Cheerios, bouncy balls, and bath squirters. He did a good job picking things up and pushing it around, he even bit on spoons. I finally got lunch in to Trevor.

He always stares in amazement at the fun that Brendan gets to have with the therapist comes by. So Brendan shared a Cheerio. He tried it.. he liked it.. he asked for more! He had a handful before Brendan pushed them all on the floor.

Once Bill was done with work, Trevor got loaded up in his carseat. The face should tell you, we were going to Walmart!

For dinner, Brendan got lots of attention from Daddy so that Trevor could get a decent meal on time. His appetizer was a handful more Cheerios and his royal highness Trevor got peeled sliced grapes.

Bailey came over to spend some time with the boys again and brought them some cool new toys. Trevor was up really late tonight playing while Brendan got his bath, and then he was too wired to go to sleep. He is still tossing and turning in bed. Maybe the Cheerios gave him too much energy? He probably had way too many puffs tonight.

I’ll be up until 2am until Bill wakes up to take over. Two nights without a nurse although hopefully next week we will have someone new for Thurs and Fri nights.

Oops, almost forgot this video of Trevor that I took for Aunt Heather. He doesn’t do controlled flops anymore, he is working hard on “practicing the dismount”.