Happy Grandparents Day to my Grandma! Grandma and Grandpa K. made a huge impact in my life and I wouldn’t be where I am today if it wasn’t for their help and influence. I am very grateful.

I speak for my little boys when I say that they are blessed with a very loving and dedicated Gramma as well. She has given so much of herself to all of her children and grandchildren and I hope some day that they realize just what an impact that she is having on them. When the boys were just buns in the oven she said, “I want to be a part of their life and not just that Grandma in another state”. I think she got her wish, although I don’t think anyone could have anticipated this level of involvement! We all appreciate her very much. The boys have a special art project that they are working on for their grandparents for today, but Brendan needs to ask for an extension to finish his part, he had something come up!

The boys are very glad to have had a chance to meet Grandpa Dusty, although his visit was short. Although they haven’t met their Granddad (trainsdad), we appreciate all of the supportive comments and we are glad he is able to know the boys through their blog.

Trevor had a great day today with Gramma. I hear he behaved himself, he must have known today was special! He knows Brendan loves beards so in preparation of Brendan’s homecoming, he tried on a few styles.

A bath isn’t over until you bite the drain plug

Trevor looked cute in his big boy shorts and t-shirt (that says “mess maker”). He is learning to stand and balance on his own although he would rather not.

Trevor’s favorite thing right now is Cheerios. No matter how much he has eaten, if you put Cheerios in front of him, he will eat them. If he finds half of a stale Cheerio on the seat of his high chair, he will eat it.

Brendan had another great day today, making good strides towards coming home. Rumor has it that homecoming day MIGHT be Tuesday. We can’t be sure until we see how he does with his ever increasing food.

He liked being held today, he is less sore and stiff and swollen. He is hanging out with Daddy.

He was extra-chompy today, teething on everything, including Daddy. He has SHARP little teeth! Ouch!!

Daddy chomps back

Brendan steals Daddy’s drink

“What is this? Water!??”

Brendan discovered that his metal crib was perfect for making raucous noises and had an absolute blast shaking his keys!

All of that chomping and shaking made him so tired! (Brendan is not the least bit dramatic about his napping poses)

“Woe is me!!”

To be fair, he is still doing a lot of healing and hurting and itching. Bill and I have to pretty much stand at his crib nonstop in order to keep him smiling and comfortable. He is a bit scared and feeling rough.
When I left tonight, he was up to 25ml and hour on his formula (full strength is 45ml). He is still doing well on that and had another good poop tonight.

Hang in there Brendan, it is almost time to come home!

It is early in the evening but I have way too many pictures already so I am getting the blog done so that I can get back to the hospital. The schedule that we have been keeping is rough, but it has been working out very well and I firmly believe that Brendan’s progress is due to the fact that we have been by his side the entire time. If we couldn’t be there, they would have just kept him sedated to keep him safe. They run for the morphine the moment he cries.
So this is the way it works in a cycle.
7:00am – 1:00pm – Bill at hospital, me at home
1:00pm – 8:00pm – Me at hospital, Bill at home
8:00pm – 7:00am – Bill at hospital, me at home
7:00am – 1:00pm – Me at hospital, Bill at home
1:00pm – 8:00pm – Bill at hospital, me at home
8:00pm – 7:00am – Me at hospital, Bill at home
This way we each get half of the daytime with each of the boys and we alternate who has to stay overnight. And Gramma spends the whole day keeping Trevor on his routine so he doesn’t get thrown off! (and spoiling and smothering)

Today I guess his routine included exploring Brendan’s bed while he was away. He was caught, don’t tell Brendan!

He says “This is the one that Brendan like best, you push right here”

Today was special though, Gramma and Trevor headed to the hospital to visit Brendan. This picture looks to me like Trevor is saying “Gramma, can I borrow some money to take Brendan to lunch?”

“Brendan hasn’t seen me in 4 days, do I look cool enough?”

Meanwhile, Brendan tries to take a nap. He normally sleeps on his sides, but the hospital mattresses seem to be made out of steel and brick so it is too firm for him to get comfortable. Sleeping in the bouncy chair almost works well.

Brendan gets smothered too.

Brendan loves to chew on the little saline port for his ventilator circuit.

He is silly

The good news came down today. Brendan had several more good huge poops so the doctors approved food. He starts on 5ml per hour of clear pedialyte to make sure his system can handle it and he will slowly transition to his formula and increase in volume until he is on normal daily feed. Yay!! Brendan!!!!

Brendan thought “clear to eat” meant Daddy’s french fries.

Gramma gets in on smothering Brendan too

Trevor just wants to know what Brendan’s buttons do

Brendan says “They are cool to peel and pull, you can have one too, bro!” (The nurse actually had to give Brendan an extra sticky lead to play with because he would not leave the real one alone!)

Trevor thinks Brendan gets all the cool toys

Brendan says, “This one is cool to try to chomp”

Brendan will be OK, Dr. Trevor is in the house

“Is this thing on?”

It was a very good day full of forward progress. Brendan is off his IV sedation completely and on his home med schedule. His TPN is being weaned as his tube food is added. His IV in his hand is gone, he just has the PICC in his leg. He did 4.5hrs of sprinting today and was awake for more than 6 hours straight.

We want progress to keep moving this way!

Brendan had a lot of positives today. He did his 4hr sprint off the vent like he hadn’t missed a beat. And he got extra attention today from the PT and OT techs at the hospital. He loves to play with all the cool new toys they bring. They were so shocked to see Brendan now versus when they saw him last in May!

When I got there this afternoon, I held Brendan for almost 4hrs. We played and talked and moved and watched movies. He gave me some smiles and passed lots of very putrid smelling gas. Brendan’s home nurse came to visit because she missed his cute face too much.
When Bill arrived tonight, we did trach care so that the hospital nurses wouldn’t have to (so that it is done right). We smelled more putrid gas but this time the smell lingered.
We wouldn’t believe it but had to check and sure enough poooooop! And before we could even say “yay! Brendan!” There was more poop, and more poop, and more poop! Two huge diapers full of dark green smelly gross real poop. We all had a good laugh about what a funny thing it is when you get so excited about poop. This is a huge step forward for Brendan’s healing and getting out of the hospital.
It is such a big deal that I took a picture. Haha!

He has to feel better now, although he is still heavily bloated and has a distended belly. I hope that now that things are moving better that he will improve more quickly now.

He played with Daddy a while and then fell asleep. He is on 1/3 of the amount of the Precedex drug for sedation now and he is handling it well.

I am too tired to elaborate about Trevor’s pretty normal day, here are some cute Trevor pictures!