This is how Trevor “naps” now. You put him down, sound asleep, and ten minutes later you find him like this, trying to turn his mobile on and off.

Brendan is learning a thing or two as well, he watched Trevor try to escape his crib.

Brendan did have lots of time out of bed to play today.

We got some nice hard rain today, with thunder and all. Trevor really liked it.

Gramma even let him splash in the puddles

He likes the splashing on his feet

Cute Trevor print

Brendan’s day was actually pretty hard, but he is such a ham for the camera.

He loves to chew on his “emergency towel”

I told him that he looked so happy, nobody would believe he was sick. So he promised not to smile for this picture.

I am not so sure about this new medicine. I guess it will take some time to know if it is really making things better or if we are just masking the symptoms of something else. It is extremely frustrating. We are grateful for his beautiful smile that keeps us going.

We thought we were managing Brendan’s loose secretions with Benadryl but it only worked for a few days. He started a new drug this morning called glycopyrrolate aka Robinul. It should dry up the copious drooling and watery trach secretions and then cause less gagging and then hopefully a lot less vomiting. For the first part of the day, it seemed to be the miracle drug and Brendan had a great day. As the day went on, I think he ended up being a little overdry and a bit uncomfortable. Dialing in his dose will be the key. The danger is thickened mucous can cause a plug in his trach tube. We watch very carefully with his vent humidifier to balance it out and always have sterile saline drops on hand too.
I can handle that much better than projectile vomits.

Since he was in a great mood when he woke up from his morning nap, Brendan got another visit to the jungle

Trevor gets more entertaining by the minute. Is this not how you are supposed to sit in a bouncy seat?

No? Then how about this?

He constantly wants to explore new things, and likes to play.

Just don’t use the wrong tone of voice or say “Oh no!!!!” or he gets upset. He is very sensitive like that.

We are hoping with the right balance of dosing that Brendan can find a very comfortable level of dryness. He needs to get stronger, we found out that he will be having his ostomy reversal surgery and his G-button installation on September 4th. It is a little further out than we had hoped but it gives him more time to grow.

It was Southwest Airlines this time that twisted Gramma’s arm. If she extended her stay another week to the 23rd, she could get a large credit back on her ticket and use that towards coming back for surgery time. We are lucky to have her, she works hard to make things go smoothly day to day.

Trevor finally figured out where the turtles go when you boot them off of the center divider!

Time to organize a rescue mission

Brendan was too busy playing with Mortimer

Trevor has to concentrate in the jungle

For our family members familiar with the “funny face”, Trevor does it his own way

Trevor spent some play time in bed with Brendan today. He likes to entertain his brother. Brendan always smiles at Trevor.

Trevor enjoys it to a point, then he was trying to escape.

Gramma convinced him to stay and play with a frozen coke (but the straw was out of the cup)

Brendan had some ups and downs today. But he had time for a lot of smiles anyway.

He found me amusing today, but would not laugh for me. I will have to try again tomorrow.

Brendan had speech therapy today. His food aversion is pretty bad, but mostly he wants nothing to do with a woman that shows up in blue scrubs and puts on rubber gloves to work with him. She did show us some things and we will continue to work with him all week.