Wrapping up this first week of the new year for the boys, all I can say is that I want a fresh start! It was a hard day. Brendan is still so-so, but not getting any worse. Trevor’s issues moved to the other end and liquid fire poop made his poor little butt red like a fire engine. He had to get multiple baths today to try to help him out. He was pretty miserable and it took two people to change his diaper and get him clean and smeared with diaper cream. He will love me years from now for sharing this info on the blog, of course. He hasn’t eaten anything new or unusual so I do not know what it the cause of this other than just being ill already.

I am feeling completely defeated and depleted. But just when you think that it can’t possibly get worse, it does. Our regular night nurse has an injured shoulder and can not work tonight. The nursing company found us a fill-in but she has never been here before so it will be interesting. Having any kind of help is better than trying to cover it ourselves.

Brendan does fine through the day if we stay on top of his breathing treatments. The nebulizer can connect straight in to his vent circuit so we can do them even when he is asleep and covered in sheet wrinkles.

He did sit up and play today, I think he is on the upswing from all of this. The Albuterol makes him a little silly too.

Even his crazy smile makes me feel better.

I didn’t take any pictures of Trevor today, so I grabbed a couple from his crib cam just now.

After dinner, he sat out on the porch with me and passed out some Halloween candy. There were not too many kids, but he really was mesmerized by kids in costumes. I think he really enjoyed it. We turned on the bubble machine that we got for portraits and the kids coming up to the house loved that. People were even taking pictures.

And now that they are both in bed and the day is done, I look back and realize that we can get through these days, we just do it. I mean, look how far we have come since last Halloween!

I had a Halloween picture in mind to take today, I will just have to do it tomorrow when everyone is feeling better!

Trevor seems to be feeling a lot better today. Just a bit of nose issue remains, but he went all out spazz crazy today as if to make up for being held back by illness over the weekend. He just wanted to pull and tear and slap and shake everything and jump and crawl fast and yell. It was about all I could handle!

I had a lot of phone calls to make this morning to schedule lots of appointments for Brendan, but Trevor decided that he was going to help.

We set up one of the old mini cribs in our bedroom when Caleb was here so that he had a place to nap quietly. We haven’t taken it down yet and it actually has been very useful. It is a great “holding pen” for Trevor when I need to use the bathroom or get dressed or even to get my shoes on without crazy t escaping.
I put him in there today and he thought it was a bouncy house or something. He was a nut! This is a long video of him just being a bit silly.

He went to Sam’s Club with me to get groceries and he got to try out his new cart cover. It fit perfectly, so much better than trying to use blankets.

“What does this thing do?”

After almost forgetting the diaper bag, I joked with Brendan’s nurse that you NEVER leave home without the diaper bag, no matter how short the trip. I am so glad I remembered it because by the time we made it back to the car, the new cart cover was pooped and Trevor’s shorts were all soaked with poop. I had a couple of old blankets in the car to spread out. Getting a diaper on Trevor is already like trying to tie a snake in a bow, changing him in the back seat of the car was a riot. Good thing I just bought two cases of baby wipes.

Once we were done there, I had to stop for gas and Trevor got to go for his first car wash. I should have just tied him to the outside of the car! He was not real happy with the drive through wash.

Brendan is still not great. I spoke to his pulmonologist’s office today and they ordered a culture of his trach to see if there is any reason he needs to be on antibiotic. She also ordered his breathing treatments to be used via the nebulizer to help open up his lungs if he can not maintain his saturations. Unless he spikes a fever (which there has been none) or starts requiring a lot more oxygen, we just have to keep giving this time.

In the meantime, he is just supposed to rest.

His mood isn’t too bad, he is just tired and congested. He spent some time web surfing with Dad this evening.

One day at a time, we just hope things get better soon!

I guess yesterday was just the “eye of the storm” when it comes to being sick. Both boys had a pretty bad day and I am just feeling overwhelmed and exhausted. Trevor doesn’t seem to have a runny nose as bad now but he was rubbing his head or maybe his ears or maybe his teeth. I couldn’t tell what was bothering him. He cried pretty much all day unless I carried him everywhere I went, and he is just too heavy!

Brendan was miserable, he just was coughing and gagging and spitting up slime non stop so the loud suction machines were constantly running and his alarms were going off like crazy. That is enough to make anyone insane. He had a nurse here today or else I would have probably collapsed in a heap of frustration. It is enough that I worried about him all day. I wish I could make him feel better.

Brendan had physical therapy today but that was just a big fail. We had to reschedule. His PT worked with him a few minutes and said that Brendan really needs to work on his arm strength. He will have lots of push ups to do when he feels better.

Trevor is briefly entertained by watching the dogs eat breakfast.

We got a package with a bunch more new birthday toys today, but neither of the boys were interested in playing too much.

Trevor just wants me to pick him up so he tries to climb up my legs.

Brendan doesn’t want anything to do with a new toy or the camera

We did get a little halloween package from Aunt Letty today, and that caught Brendan’s interest for a moment. I am sure he will play with them more later!

Trevor thought about playing with the Halloween beanies

But he would rather get picked up

“Spill proof bowl, that is a good joke!” says Trevor. He emptied half of it on my lap and down the couch.