Typing “Week 40” makes their fourth birthday just seem so close!

Even closer – only ONE day left before the big day. EEEK

We have had some big changes happening in the house. After a few weeks on our own thanks to the MRSA, we have decided to discontinue private duty nursing. Brendan is permanently moved in to the bedroom with Trevor and Bill and I take turns sleeping on a mattress on the floor in between their two beds.
Yesterday, someone came and picked up the daybed from the living room. No more bedroom in the living room, YAY! As soon as we get some more cleaning done, I will post a picture. The room seems so much bigger.

We are just waiting for the big day and trying to stay cool.

Outside baths!

ONE MORE DAY!!!!!!!!!!

We are using “trach ties” as a unit of measure because we change them and do all of his trach maintenance right after his bath every night. So the number of trach ties is the number of evenings left until decannulation day.

Since about ’15-to-go’ day, we have been singing this little song in preparation.

I have been trying to talk to him about surgery and staying in the hospital and getting him ready for the adventure.

We sometimes linger when doing trach tube changes, not putting the new one back in right away. It has given him some time to feel what it will be like without the tube in his airway. Unfortunately, he has a new game he likes to play.

This video is full of loud rudeness. 🙂 🙂

He is just squeezing his chin down on his chest and blowing as hard as he can out his trach-hole. He thinks it is hilarious and so does Trevor. When the trach is removed for good, he will not be able to do this. They are going to cauterize around the stoma and make it raw to encourage it to heal closed. (He won’t be blasting air out of it!) He will also be encouraged to hold his neck dressing when he coughs to keep it from opening up. It should close all by itself in about 2 weeks.

Five more trach ties to go! Five more trach ties!
Our nerves are raw, but we are ready.

There is not much better than completely ignoring all of your obligations and working on a totally frivolous fun project just because Joann had a good sale. Of course, then all of the to-dos are still waiting.

Today we made some pillows in the form of Captain America’s shield.

The back side has a super cute Marvel heroes fleece that I found in the remnant bin.

Trevor finds them comfy

They are also good for pillow wars

Only 8 days left!