Only one week until surgery day!

I really love to see all the progress that Brendan is making and I can’t wait until the big bag is gone. He is doing really well on his rolling and tummy time with sprinting, but he definitely prefers to roll away from the ostomy bag. When he gets to the point where he is crawling, that bag would have caused some serious trouble!

Mr. Roly-Poly having a good time today

(does not want to roll on to bag)

Trevor is going to drink the bottle himself!

Getting closer

Just another monkey on the jungle

A 4x speed time lapse of what Trevor does in his crib when I leave him to nap while he is still awake. This time, he was so mad and crying that I got him at the end and gave him a small bottle. Then he was out like a light. His latest thing is scratching on the textured walls and playing with the ties for the crib bumper.

Today started out well. Trevor slept in until 7am. Brendan had a nice morning and did his 4hr sprint with no problems.

But Trevor tried to skip his morning nap and didn’t go down until 11am, then he slept through lunch hour and got all off his schedule. In order to try to wear him out and help get him back on track, I took him down the street to a friend’s house to swim.
Trevor had a great time, he really relaxed splashed around.
But I am very mad at myself for being an idiot. I managed to walk in to the pool with Trevor with my smartphone in my pocket. I have never been a huge fan of people that are intertwined with their devices so deeply that losing their phone is like amputating a leg. I reluctantly got a phone this time with a data plan just to see if I would use it. I still don’t think it is worth the monthly expense. It isn’t until after the phone was fried that I realized how much I had come to depend on it. Sure, I got instant notice when I got an email, but more importantly it was all set up with Brendan’s med schedule and reminders, all of his doctors contact info, my calendar of appointments, and a lot of text messages back and forth to Brendan’s medical team. I feel out of sorts and nervous without it.

In a way, I am glad for the wake up call. I don’t want to be tied to technology. But I am extra tired and trying to figure out what to do for a phone is beyond my mental capacity right now. Bailey gave me an old Blackberry to set up in the meantime so I can get important phone calls. I haven’t managed to activate it yet, I have to call Verizon customer service.

Brendan plays with a bottle top.

Trevor tried blueberries today. A few shudders and eye twitches later, he decided he liked them. Except then he ate them all and ended up spitting out all of the skins at once. He doesn’t like to swallow anything that hasn’t melted or broken down smooth.

I made Trevor do the laundry again.

He says “Hey Brendan, come help with this, there are lots of socks to fold”

Brendan says, “Um, sorry bro, I am having a conversation with a very awesome baby, can’t help!”

I swear it was just yesterday that I wrote that it seemed like just yesterday that we had done a trach change. It was already time to do it again! Sundays come around quickly. Gramma and Grampa will be here Friday and surgery is a week from Tuesday!

We were so busy today, I didn’t take pictures until late in the day. My camera battery lived on the charger most of the day. I just passed the 10,000 mark on my camera for photos and videos and the counter had to reset!

Every day, we have at least one guaranteed chaos hour, and it usually happens right at noon every day!! Any more than that are just the bonuses and seem more random. Today’s lunchtime chaos was like this:

– Both boys asleep, Bill leaves to go visit Grandpa Jack.
– 11:45am, with their twinny senses tingling, both boys snap their eyes open at precisely the same moment and start crying. Ahhhh, who do I get first?
– With much drama, diapers get changed, boys are moved to high chairs for lunch. Brendan throws a fit and coughs and sputters any time I try to go in to the kitchen to get Trevor food.
– Racing back and forth 100 times suctioning and getting lunch prepared. Feeding Trevor while trying to keep Brendan happy.
– Trevor screaming in his chair, Brendan screaming because Trevor is screaming.
– Trevor has an epic load of poop in his diaper. I can’t go to the changing table and leave Brendan alone so I throw Trevor in Brendan’s bed on a pad. Trevor is trying to spin and climb and I am trying to reign in the poop. Brendan needs suctioning but I can’t touch it because my hands are dirty. Alarms blaring.
– Get Trevor diapered, try to suction Brendan but I can’t because Trevor keeps trying to climb out of Brendan’s crib or pull the suction tubing.
– Holding Trevor between my knees with him pulling the tube as hard as he can, I get the trach suctioned with one hand. Brendan sees my weakness and starts peeling the tape off of his cheeks.
– Bill walks in just in time to take the epic poop diaper to the garbage and take over Brendan so I can give Trevor a bottle.

Trevor went with me this afternoon to run errands. We hit Sams Club and then needed to stop and pick up liquid vitamin D for babies. We had to go to three stores because they either didn’t carry it or were out of stock. By the time we got home, we were both sweaty and tired but Trevor refused to nap!! We had a little video chat to keep him occupied until dinner. Brendan had a blast and Trevor would not keep still.

Because he was crying during dinner, I gave Trevor a cold pop can to entertain him!

Trevor has a cheerio targeting system malfunction

He gets more cheerios stuck on him than in him. Later I will change his diaper and there will be cheerios on his back and legs. They fall off randomly throughout the day. Our un-dogly dogs wont eat them so I hope to find them before I step on them!

“People of Earth, take me to your leader”

Brendan had a lot of Daddy time today. He was laughing and typing all afternoon chatting. He was worn out tonight and needed lots of maintenance procedures. Every time we take him out of the bubble bath and wrap him in towels, he looks so darn cute! He loves it and just closes his eyes.

In honor of the last week of dealing with the ileostomy, I took some pictures. If you are REALLY squeamish about medical stuff, don’t open these pictures. (they are not too bad though, really)

This is the stoma. It is actually a loop of Brendan’s small intestine pulled up through a hole in his abdominal wall and sutured in to place. The loop is cut and the two ends just hang out. The waste comes out of the one on the bottom. The top one is just waiting for its turn to be reconnected to the system. This base is a waxy disc and you have to cut out the hole to fit the stoma as carefully as you can so that it protects the surrounding skin. The base is just held on by its own adhesive and surrounding tape.

The bag has a ring that just clicks on to the base like putting a lid on a piece of tupperware. The clip at the end of the bag can be opened to empty it or release gasses. Expelled gas inflates this bag like a balloon and WOW does it smell BAD to let it out!

The Trach change went very well again and the boys are sound asleep! And another Sunday is complete!