“There are no withdrawal symptoms to speak of” .. says the neurologist. So we start to take down another medication a little at a time and Brendan has a very bad morning. Anxiety, sweating, agitation, restlessness, high heart rate even while asleep. His poor little body is very sensitive to changes in drugs, whether the doctors expect it or not. Fortunately some Tylenol and lots of holding/rocking got him through and he had a good afternoon. I hope it was a short episode of adjustment to the dose change.

He can take his frustration out on his rings!

Good thing that the high chair is also a recliner!

Trevor just says “Where’s lunch?! There’s no service in this joint!”

“Mmmm camera strap”

Trevor somehow stole Brendan’s rainforest from the crib

“Maybe if I drool on it, I can keep it”

Brendan did sprint off the ventilator for 2hrs today, and at the same time he was able to do some roly-poly time on the floor. Having just the mist collar on his trach makes it easier to do tummy time because nothing is pulling on his trach tube. He liked tummy time!

“Save the rainforest!!” (from Trevor!)

He made a good attempt at roll over!

Trevor had a lot of fun today. He wants to know if he could join The Bearded One’s band. He has some really advanced skills that have never been seen before!

Trouble trouble trouble!!
Walking in to Trevor’s room and finding him standing at the side of his crib was a bit of a shock. It is a hard crib to pull up on. He just peered over the rail like it was just another morning. He is getting stronger by the hour, hopefully his stability improves very quickly. I had to take the mobile out and we have to move his aquarium to the back wall so he can’t stand on it to climb out!

This morning, Trevor had some banana chunks with breakfast

He liked them, but he had some trouble picking them up! He got frustrated until I got the spoon to help him eat them. He gums them up really well!

These are for Aunt Erin!

Trevor had more fun shopping at Sam’s Club than at Walmart. Maybe this smile was because he thought I was going to buy him a frozen coke while we were there. But I didn’t!

Brendan was in a great mood this afternoon

He was working on his chew tube that the speech therapist gave him.

Chew tubes are cool

Peek!

Laughing Brendan!

Another weekend has blown by, almost another week has passed. I am glad this blog is here because reflecting on a few weeks ago or a few months ago or late last year really keeps things in perspective. Today was trach tube change day again, and even though we have done at least 10-12 of them, it still makes my heart race a bit. When I was waiting for these babies to be born, I couldn’t have imagined the level of acute care that we would still be providing at almost 42 weeks old. Heart surgery was almost 5 months ago and we imagined that to be our biggest hurdle. I can’t wait until the day we can get rid of this trach. Still, I have to just look back to see how much Brendan is growing, changing, and improving. Trevor is amazing too, he does new things every day to make me laugh.

Trevor has Christine wrapped around his finger now. He got her to sit and hold his ice cube for him to soothe his little tooth bud. That way his little fingers don’t get cold.

He was excited to show Johnathon his favorite videos on his laptop

Brendan enjoyed lying in bed and playing with Jacque on a long chain.

Brendan had another mixed day. He has phases of extreme irritability and then super happiness. He occasionally throws these epic tantrums now when you try to put him in his bed. It used to be hard to tell when it was pain or withdrawal, but sometimes these are obviously just tantrums because he wants to get picked up. I told him that next time I was going to video tape one of his fits. It is the only way anyone will believe me, I mean look at this face and tell me it looks like a baby that has behavioral issues!

“Mommy says I am not allowed to pick tape or pull tubes. Nobody has said that I can’t bite through it!”

I am just waiting for the top teeth to come in and then biting through the feeding tube could be a real threat! We are so close to it being gone. 30 days until surgery!