There are some awesome things about May 29th.

First, the boys’ super cool cousin Caleb turned two today! Happy Birthday!! I wish I could have gone to your party, and boy that birthday cake looks yummy!

Second thing about today is that it is the one year anniversary of the day that Brendan was finally released from the hospital after a four month long stay. It was such an incredible day. Brendan got a ride home in the ambulance and started a whole new chapter of his journey. Trevor was so happy to see him back then! So much has changed!!

The staff from the home healthcare company stopped by and brought Brendan (and Trevor) some Elmo balloons and a cake.

We had one of the new nurses come to spend a training day with Nurse Jen. It was super busy this morning.

As much as there was to celebrate, it actually was an incredibly stressful day for me and Bill. Bill had a packed work day and then went to the closing on his dad’s old house. It is good to have it sold and done and there is some closure there, but also a lot of emotion for the whole family.

Brendan was not himself at all today, he was super tired. His eyes always looked glassy with dark circles. He needed more suctioning and he had a sinus drainage that kept choking him so he spent much of the day throwing up slime. I already called the pulmonologist’s office to see if they will do a culture to find out what is going on before we hit the weekend. Wouldn’t you know, this is the first weekend we will have no night nurse coverage Fri or Sat, and Brendan is getting sick. AGAIN.

Every time he has symptoms like this, I get sick with worry. I never know if it will be a simple cold that he will just have to fight through, or if it will be a major illness and land us in the hospital. Tonight as we put him to bed, he felt warm and had a temperature of 99.4. He didn’t run a fever all day.

All day long felt like a broken record replaying. Pulling Trevor down from high places, telling him over and over to stay out of things, making both boys stop messing with the food pump, the crying, screaming, vomiting, suction pump running. We had a ventilator check this afternoon too. I just feel the stress throbbing in my head and I want to go hide under the bed and cry. But, like always, we take it one day at a time. This is a time loaded with big changes and it will all settle down again.

Here’s the only other photos I took today