We had a really rough morning and I am not entirely sure why. Brendan had a good night and slept well but when he got up he struggled. His sats were low, his heart rate was super high and he was frequently spitting up and choking up phlegm. I of course kept thinking the worst, that he had caught an illness from someone and that we would end up in the hospital.
He went back on the ventilator, oxygen turned up from 3L to 5L and I held him for a long time until he took a nap. Once he had his 10am medications, he took a nice nap and his sats returned to his norm, his heart rate came down. He woke up feeling like himself again.
We were able to put him back on the mist collar and he had a pretty normal day, full of smiles and play. I am not sure what happened other than possibly withdrawal. He is pretty agitated tonight, unable to just relax and fall asleep but his numbers are good.

I almost thought we would have to cancel speech therapy today. But he woke up in time to play. He just was in no mood for it and made it clear! She even got out an iPad and he was not interested!

“No.”

“No.”

“No.”

“Oh wait, I like this app.”

After about 20 minutes of refusal to engage, he gave up and decided to play with the iPad and let the therapist mess with his lips and cheeks. The whole time, Trevor was taking apart the bag full of the therapist’s stuff.

We still have not taken any pictures with visiting family, everybody is coming and going. Bill was around today although he spent the majority of his waking moments on the phone. He did have some time to wrangle babies.

Just a quick update for today, we’ve been very busy. Bill and all the family in town have been taking care of arrangements and going to appointments and making phone calls. I haven’t taken a single picture with the visiting aunts and uncle yet!

The boys and I just spent the day doing the normal stuff. Trevor was wild and crazy as usual but he settled down for quite a while and watched a portion of “The Lorax”. Doesn’t he look cozy?

Then he remembered what it was he was supposed to be doing. Climbing and bothering his brother who was trying to nap.

Brendan had an excellent day. He was in a good mood and smiling most of the time. He had a meltdown for physical therapy. He tried to cough and cry his way out of having to do the work, but we made him do it anyway.
The rest of the day, he just played and played.

The whirlwind continues tomorrow.

This is going to be a whirlwind weekend with family in town. It is a shame when it takes a tragedy to bring everyone together, but we will enjoy the time we have with the ones we love.
Services for Grandpa Jack will be this Sunday. If you need more details, please email, text or call.

Bill had quite a bit to do today, so the boys and I spent the day together. We are grateful for Brendan’s nurse MaryAlyn who worked a 12hr shift starting early so that we could have an evening to get some things done. We are also glad nurse Jen was here all day so that Bill could be gone and I wasn’t overwhelmed with the little monkeys. Thanks Christine for giving up your evening to help get through the end of the schedule and get the boys to bed.

Nurse Jen puts Brendan to work whenever he is awake. He does all of his exercises.

She makes it fun for him though!

Brendan amazed all of us with his standing today. He was so proud of himself! His legs get wobbly really fast, but he is getting stronger!

Trevor went through a couple of outfits and I finally gave up and left his pants off. He was totally happy with that idea.

Has anyone seen Trevor?

Here’s a little compilation of some of the fun and naughtiness today. And then there is Trevor’s “walking”. He actually walks amazingly well when the camera isn’t on and nobody is coaxing him.