I had an off day, I just felt like I had jello for brains and I was very tired. Trevor and I ran a few errands this morning but otherwise, it was a TV heavy kind of day. I didn’t take any pictures until this evening.

It rained softly all morning and that helped bring the high temperature down. It was a relief when Bill came home and ran the boys around outside for a while.

Brendan says, “I’ve got Trevor, you go rest!”

It was nice to cook dinner when all the chaos was outside. Then the chaos came in to the dinner table. Beware the Dread Pirate Toast-Beard. Arrrrrr.

His toast must have been a little too well done. He ate all of the butter off of it and then gave the rest to Eins.

Brendan rapidly throws anything that I set on his tray. He is daring me to try something else!

Trevor says, “He’s the fastest food slinger in the West”

After all that nonsense, we had a highly intellectual conversation

Brendan hasn’t worn his PMV while he has been wet, so he has an arsenal of sounds he makes with his trach. Trevor had finished his meal and was impatiently waiting for me to be ready to take him to the bathtub.
(When he gets wound up, “Ah Ga!” is how he says “dog” and he says “woof woof” when the dogs were running around begging)

Brendan seems to feel well, he is very silly and active. He just has yucky sounds in his chest and is still coughing up very loose wet slime. We see the pulmonologist on Friday. I hope he is looking and sounding AWESOME when we go.

I hardly believe it when I type the header of each post. Week 41 – Day 5 … it just means that their second birthday is getting close. Two years is supposed to be a huge milestone for Brendan and his little lungs. When he was super tiny, I remember hearing again and again, “just keep him healthy those first two years”, “two years is a real turning point”. I don’t know what I imagined it would be like then.
We’ve gone backwards a bit today and had to turn up his oxygen to 4L again. He brought up all kinds of real wet loose junk but this evening, his cough has subsided. He is sleeping peacefully after having a pretty active and playful day.

We got an extra nurse shift today because they can make up hours they missed while Brendan was in the hospital. It totally didn’t feel like Monday! It was overcast and “cooler” this morning so the boys got to slide and swing and play outside.

Once Bill signed out of work for the day, we decided to spend a little play time together as a family. Bill got to experience the fun of the lizard sprinkler.

We stretched Brendan’s tubing as far as it would go to let him come outside too. He had to help Daddy hang up our new metal dragonflies.

Trevor tried to explain to Brendan how much fun the water can be

At first he wasn’t sure

Trevor was rinsing my toes. You can’t tell by the pictures that the water is hot like bathwater straight from the hose.

Brendan started to get it

He was pretty amazing, tolerating the sand and grit and concrete and playing in the water

After a while, he had so much fun that he cried when we had to go inside to make dinner.

I hope we can turn his oxygen back overnight. He just got his breathing treatment now at 10:30p and is asleep with no coughing at all.

Brendan had a bit of a relapse into junky coughing today, he needed extra suctioning. He is still on 3L and doing OK, just progressing toward health at a Brendan pace. He is even coughing in his sleep which I hate to hear, and he is very restless.

The boys were pretty good today. Trevor is very cute sometimes, he walks up and gives things to Brendan, then he turns and claps like he wants me to applaud.

They had an assignment to do today for Beads of Courage. We printed out a special coloring page and got out crayons. It was proof that they are still not ready for crayons. There was more crayon eating than coloring on the paper. They still had fun and I spent the whole time saying “Not in your mouth!!”

Brendan won’t eat food, but he will take a bite of crayon. Then he gets mad that he has crayon in his mouth.

Trevor has a special rocking horse riding technique to share, he is riding and watching The Lorax.

I really hope this is the last of the bug Brendan had. He deserves to feel better.