We were lucky enough to get an extra nurse shift today so Brendan had care all morning. Bill, Trevor and I were able to go out and do some shopping.

After just a month shy of 13 years of memories and reliable service, it was time to say goodbye to my green Xterra.

That car has been everywhere: camping, roadtrips, commuting, hauling us and the dogs on a whirlwind trip around southern Utah, off road, on road, even bringing our teeny weeny preemies home from the hospital for the first time. I am going to miss it. The one thing that it could not do is get our whole family from point A to point B safely. There is just not room enough.

So we went to see the big inflatable bull to see if it would grant us a wish for a new vehicle, but we found out it didn’t work like that. So we went inside to see the sales guy.

Trevor says that he and Gramma would like to cruise around in this one and Brendan can drive separately.

This is what Daddy wishes we were looking at.

“Gimmee the keys, I am going for a test drive!”

Once we figured out what we wanted, Trevor agreed to cosign. His cute score is better than our credit score.

We now own a 2013 Dodge Grand Caravan, pretty bare bones model with plenty of room for 2 car seats, a nurse and all of Brendan’s medical equipment. I no longer have to stress about how I am going to get both boys to the doctor for their one year checkup on Monday, or any of Brendan’s other followup doctor appointments.

Brendan just enjoyed himself at home alone and got lots of Trevor-free quiet rest time. He did so well today, sprinting off-vent for over 8hrs.

He has a celebratory beer when we get home. Trevor already got to ride, Brendan should enjoy his first trip in the new van. We will probably have it until it falls apart, so he just may learn to drive in it some day.

Trevor was feeling a bit better today. He still has loose poops, but there was nowhere near as much screaming involved.

He only needed two baths today, not ten

We let him get some air time on his poor skin again tonight!

Thanks very much Jonah and Christine for bringing over a delicious dinner! It is such a great help after such an exhausting week. We are lucky to have a nurse to cover for us again tonight so we hope to get rest.

There are so many things going on in the world right now that make my problems seem very small. We just march on through each day and find ways to appreciate the cute, the funny, the amazing, the smart, the naughty, the silly and the strange!
These two boys push us to work harder than I thought we could and it is very rewarding, even on days when I long for just a few more minutes of sleep.
Trevor was awake at 4am again. His poor red butt is so bad and his poop issues are not over. I was up with him until about 4:45 until Bill took over and managed to get him back to sleep by just after 5, then he slept again until 7:30.
He had a pretty good morning, but when he starts pooping again in the afternoon, it all goes downhill so fast and it ends with screaming pain. It hurts so much to see a baby cry with that much pain and frustration and be powerless to fix it. We are doing everything possible, even letting him go around the house all evening with no diaper to get some air on his skin.
Little bit of poop leads to standing him in the sink and washing him down, followed by application of several creams and powders, carrying him around until he is calm again. Then he gets down to play and seems pretty happy and comfortable. Then a little squirt of poop again and it all starts over.
He didn’t have any dinner tonight, just bottles of formula and pedialyte. I expect to hear from him during the night.
The only good news is that the volume of each poop was way less than yesterday, maybe it will be done tomorrow. His poor voice is hoarse from all of the crying.

Brendan is feeling much better. His cultures came back all negative except for the usual pseudomonas. In order to be sure that this does not lead to pneumonia, Brendan will take an antibiotic to clear that up. I just hope the antibiotic doesn’t lead to more issues.

So on to all the happy and cute!

Birthday packages continue to show up! Trevor is going to think opening boxes full of cool stuff is just part of his daily routine.

Flashing, glowing, repetitive, singing, laughing, spazzing, hypnotic noise maker! Just what they love!!

Trevor tries to drive it around, he learned that from his cousin!

Then back to normal Trevor stuff, he turns it over to see how to take it apart.

Brendan had speech therapy today. He has figured out that the new speech therapist has an agenda, just like the old one. He lets her know how he feels about it. “This crap again?!”

“Oh, look how sunny and lovely it is outside..”

“There, now she can’t see me or put anything in my mouth”

All else failed, activate full drama mode complete with giant tears.

He didn’t do so great with his session, but once she was gone he sure was full of smiles and let me do all the things she wanted him to. Later on, he got the new birthday toy. That last bit was all an act.

He loves pianos, especially flashing, glowing, repetitive, singing, laughing, spazzing, hypnotic noise maker ones!

Let me share the noise!

The only thing Brendan loves more than a good commotion is playing fetch. He throws everything on the floor and smiles.

Mommy’s no idiot though, I tethered it to his tray with links. He just will play it with his feet instead now.

The other toy we got in the mail today was a real hit too. It’s a chomp and clack wooden alligator push toy. The little mouths chomp and clack as you roll it. Trevor LOVES it. He will laugh if you roll it so the mouths chomp. He loves to spin the three little butterflies on the handle too.

He took to the idea of pushing it real well! We just have to make sure it doesn’t get away from him right now, I don’t think that will last long! (the clacking is not very loud, that clacking you hear is Brendan’s piano playing)

At the end of every long miserable evening, I always get to write this blog and remember each day has so much to love. We have an adventure planned for tomorrow. I hope it all goes well!

This morning was such a relief. Even though Trevor was up for the day at 4am and I was short on sleep, the fill-in nurse did a good job with Brendan. Even though the nurse left at 8 and Bill was in the office until around noon, everything went smoothly and the boys seemed to be doing so much better.
But then Trevor woke up from his afternoon nap with more fiery diarrhea, a.k.a. fierrhea. It was no joke, the poor baby’s skin is just so imflamed and painful. He had a miserable evening. I just had to keep soaking him in the sink to get him clean, baby wipes burn too much. (I dare you to try them yourself when you are a little raw, they are awful!!)
I tried talking to the pediatrician’s office but will have to call again tomorrow, there was a bit of a miscommunication there.
We owe a big thanks to our friend Lisa who brought a wonderful meal and wasn’t afraid to dive in and literally get her hands dirty to help. It was much appreciated. Sorry I couldn’t get a hug before you went home. Lisa went out to talk to a pharmacist for us about finding anything to help soothe the burning because 5 types of diaper cream didn’t help.
The pharmacist said it sounds like this is the rest of the battle with the virus that gave him his cold and that we have to ride it out. Keeping his poor behind clean and slathered in Aquaphor to protect the skin from further damage is all we can do to help it heal.
So the journey is not over yet. I hope he can get though this fast.

Brendan had a great day in comparison. He is not back to 100% of where he was, but he is ready to move on with his other progress like sprinting and weaning. He got a lot of rest today, he even took a nap after his bath while I did his trach ties.

He even survived a bear attack

Trevor had to go have words with the bear

“Here is the bear, bro, I will take care of him if he give you trouble again!”

“That goes for you too!”

Trevor was very funny with Brendan this morning. He walked right up to Brendan and squashed B’s nose flat with his finger and said, “Hiii, Din Din!!” I am not sure if he thought Brendan looks good enough to eat for dinner, but it sounded to me like he tried to say ‘Brendan’!

Then again, he was also really happy to see roverT and give him lots of high fives!

It feels like we are almost over this giant speed bump we hit. Thank you again, Lisa. I am thankful all of my east coast friends and family are safe and hope the cleanup goes well. I hope Gramma and Maria have a good road trip to see the soon to be cousinasaurus family. We hope nurse Sherelle gets good info and can heal quickly. Things just need to keep getting better.