The Ordinary Life

It's been a while since I've written anything and I wanted to write a year end post or new year post so I've been coming back and forth to my computer for a while now, trying to figure out what to write.

Type. Type. Type

Delete. Delete. Delete.

Repeat. Repeat. Repeat.

Then I saw one of those little meme/saying things on Facebook and it really spoke to me.

2015 was a pretty ordinary, routine year for us.   Generally, Philip's health this past year was so amazing that we had time to enjoy the ordinary life. We had maybe 2 hospital stays and the rest were routine visits and testing. Maybe that's why I've been a little too reluctant to post anything. I don't want to jinx it, but it really was so great to be able to take a little vacation this summer and spend the holidays with our families. I'm scared of getting too comfortable with this ordinary life that I'll be crushed if it goes the other way again.  So in the meantime, I will enjoy this ordinary, breathtakingly beautiful crazy life.

And because I also use the blog to sort of look back and see what his numbers are like here is a little more details about his health.
At year end, Philip's direct bilirubin went up to 2.9 then down to 2.5 and his other liver numbers remain about the same. (always elevated but not too bad) His liver is still functioning well but with the elevated bilirubin, the liver damage will keep progressing slowly.

His spleen is enlarged because of the portal hypertension and he is still at risk for esophageal bleeding and fluid in his abdomen. He will continue to be monitored with endoscopy surveillance with one coming up at the end of the month. He still suffers greatly with the itching, waking several times at night from it. Some weeks are better than others, but some are really bad. He has an amazing personality that I think stems from a lot of stuff he has dealt with in his 2 years. He is quite the character and makes us laugh everyday.