The roller coaster life continues. It wasn’t that there was anything bad that happened today, it was just the kind of day where insecurities were magnified. Anxiety, fear, doubt, and worry plagued me all day, just because it builds up and we all do our best to stay focused and positive on a daily basis.
The new OT team lead brought a speech therapist with her today to do Brendan’s speech assessment. I literally was speechless for a while when she said that she has NO trach experience and she didn’t even know what his speaking valve was. Really?? Did I just not wake up yet today and am I still having a nightmare about therapy? How do you even become a speech therapist without understanding how a trach works?
I have started to realize that I am putting too much faith, hope, and expectation in to early intervention services. I somehow expected professional service providers to be educated.
I need to step up my efforts with both of my boys. We have some changes that need to be made and the first is going to be a huge cutback in the amount of digital entertainment. I feel like the TV, iPad, and phones are getting out of control and I let it happen. I promised myself that I would not have the kind of kids that would always be buried in electronics and that is the path that we are on.
Trevor and I have another outing with the Mom’s group in the morning. We are going to continue to expand our social activities and try to find things that Brendan can do too before cold/flu season comes back around again.

We continue to eat dinner at the table and give Brendan food every night.

It is hard to applaud Brendan for playing with his food and then tell Trevor not to play with his food. He just wanted to scatter rice everywhere and drop more on the dog.

The good news of the day is that Brendan’s oxygen was turned down again and now he is on only 1L of flow. Bit by bit, he gets stronger.
We should have sleep study results and a new plan in the morning too.

I recently joined a Mom’s group in my area, thanks to Meetup.com. There is everything you could ever want on Meetup, I swear. I found this group for “east valley first time moms who had their babies in 2011”. It is great because our kids are all the same age, we are all living close together, there are no older siblings to worry about entertaining too. I went to my first organized Meetup today with Trevor. We are going to scope things out and see what things we might be able to bring Brendan to do.

Today’s activity was at the SeaLife Aquarium. I have been meaning to go there for years! I met two other moms and their kids and we had a blast. We got there right when it opened and skipped the first few exhibit rooms so that we could get in ahead of the crowds. We had the place pretty much to ourselves and when the masses started to catch up to us, we moved on. It gets really busy!
It is a pretty amazing place, Trevor was overwhelmed.

Trevor bonded pretty quickly with another little boy named Jace. In this picture, they are in the big sea tunnel and the floor is see-through. You can see a shark passing under Jace’s feet! This made Trevor nervous, but having a friend in there helped him not be scared.

Jace really wanted to hold Trevor’s hand!

Then they dragged each other all around the place

It won’t be too long and Brendan will be able to join in the chain and run with them too!

Trevor did lots of exploring.

There was a lot that Trevor liked about this outing, but we determined it would not be a good place to bring Brendan. It is very over-stimulating and there is a lot of weird dark rooms and curvy glass making optical illusions like a funhouse. And it was SO HOT!!

We got home just barely in time to see the garbage truck and then get Trevor in bed for his nap. Brendan had a good day at home with his nurse and he took a nice long nap too. (which is why it is 9:30pm and he is still awake!)

At the dinner table, “You expect me to eat this?”

He was all about breaking tortilla chips though

Trevor was getting rice all over the dog who was waiting for taco meat to rain down.

Brendan thought throwing food sounded like a good idea

Bath time! I kept them entertained with two plastic squirt bottles that they were taking apart.

When they start to fight over the bottles, I turn them away from each other. (It works for at least a minute!)

It looks like the joke may be reality sooner than later

He is doing a very short sprint off oxygen while he plays. I love seeing him with no tubes, but it is only for a brief moment for now.

We have no big plans tomorrow, just errands and chores and therapy.

Mondays are days with no help, so that also means no outings. It is difficult to keep the boys entertained and wear them out when we are confined to the house. It gets harder to keep them safe when they are both getting to be regular monkeys that want to push and test their boundaries.

I started out the morning by breaking out the huge box of tools. As soon as I saw Brendan trying to climb in, I grabbed the camera.

I really enjoy seeing them tolerate each other in close proximity – at least some of the time!

Brendan looks like an old pro

Trevor did not want to get dressed today, but he mostly put on his own shoes and he wanted the tool belt on.

He is working on his foreman stance

He must be tweezing his eyebrows the manly way

They wore me out by 9:30am

And then they got going. Look who climbed up there all by himself! (I only wish I was kidding!)

He is perfecting his high kick, but he has yet to get up there using this method

Brendan wore his PMV almost the entire day and he wore it out with his talking!

I decided to show the boys the new video of their cousing K-rex growling. Trevor didn’t think much at first but Brendan would burst out in laughter any time Kieran would growl. I had tears of laughter in my eyes watching him laugh at his cousin! After a few replays, Trevor got caught up in it too. After that, just seeing the video start made them laugh although the growl parts really fired them up.

If you don’t follow Kieran’s blog, here is the video that they are watching:

Here is the “reaction video”

It was a hard day physically and very draining emotionally but I just remember how much worse we have been through and how quickly this time will be gone. I try to appreciate the boys even for their tantrums. They are amazing little kids.