We hope that everyone had a safe and relaxing 4th, Happy Birthday America!

We are lucky to have Gramma still here with us for this 4th of July. (It was Brendan this time that twisted her arm and convinced her to stay even longer). She fired up the charcoal Weber grill and made some seriously mouth watering BBQ ribs. We also had some super good homemade potato salad! So we didn’t miss having a 4th BBQ after all, even though we were stuck at home.

Brendan had a good night and a semi rough morning, but he has managed to keep his feeding tube in place all day long. That is a very good thing!

Brendan likes to see his dogs!

He likes to sleep on his side but has trouble staying that way. This tried and true blanket sling works wonders to keep air moving past his little body and trach tubes, but keep him supported on his side.

Brendan was in a good mood most of the afternoon, he just had a few spells of discomfort and lots of suctioning required.

He loves his Jacque the Peacock

Trevor got to try something new today! It is a noodle soup puree of carrots, peas, noodles and chicken. He has never had meat before! He was a little apprehensive.

But he was hungry enough to try it

Whoa, what is this taste?

Analyzing…

And he approves!

There is nothing yet that Trevor won’t eat, we hope that he stays that way. Brendan is going to give us enough eating trouble for the whole family!

Hopefully soon, we will hear back from the GI doctor’s office about surgery scheduling. I have so much anxiety about Brendan going back to the hospital, but I am so eager to get this huge milestone behind us!

This morning should have been simple. Bill took Aunt Shannon to the airport and then went to the office. We had a nurse working today and I was able to get a lot of cleaning and organizing done (really just scratching the surface of the big project). But then for the 3rd time in 3 days, Brendan threw up his feeding tube. I wish I could blame his little hook fingers for pulling it out, but it is not his fault. He just retches so hard when he gags that the tube comes up from the back of his throat and then out his mouth.
We had to put him through the ultimate torture AGAIN and put a new tube down. In order to try to prevent being four for four, we used a different type of tube. It is not quite as soft and flexible, so we are hoping that will help it stay down.

He promises to be good.

Brendan really loves for Trevor to spend time with him, especially when Trevor is talking.

We cleaned out the pack and play today and Trevor got to play in outer space again. He learned that if he rocks on his hands and knees, he can get the whole pack and play to sway and rock and all the toys go crazy too.

Trevor found his mirror baby, Rovert, several times in space today.

Trevor slept through the night again last night, I hope he does the same tonight. Brendan is getting his nights on a better schedule now also!

We had quite an adventure today. Brendan managed to throw up his tube again this morning right before we were going to leave for the hospital for his tests. I had a very hard time getting it put back in this time and he got really upset right before his travelling. Just when I was ready to give up, it went down, and we got out the door just in time.

Brendan had his contrast study of his colon in order to prep for his upcoming ostomy reversal surgery. Not many people can say they have been told that they have a beautiful colon, but Brendan can. The doctor doing the test thought everything looked great. This xray shows how much improvement his lungs have had, how “beautiful” his colon is, and what perfect placement we got on the feeding tube. All good news!

He also had bloodwork that was all good and he has reduced 5 more doses of drugs from his daily routine, 3 things have been eliminated. He handled everything so well! He came home to a couple hours of nap and then he had physical therapy. He also started a daily dose of Singular to help dry him up a little and maybe prevent some of the tube hurling mornings.

This is Aunt Shannon’s last night here. She had to spend the whole day with Trevor while Brendan was getting his tests done. She spent a lot of play time this evening with both boys while Brendan could keep his eyes open. We wanted to put both boys in matching firetruck pajamas but they were too tired. So Brendan got to be the “fire” in a blanket and Trevor was the firefighter in jammies.

When Brendan thinks something is really silly, he doesn’t just smile, he crinkles his nose up. This is a full crinkle for Aunt Shannon.

The boys will miss her I think, she spoils them!! (you just can’t help it, they are overwhelmingly cute!)