Tuesday, July 9, 2013

Independence Day & GCSF

Keegan celebrated our country's birthday with a pretty big milestone.  His first swim in over a year!

Hat? Check. Goggles? Check. Rash guard? Check.
Floaties? Check. Flippers? Check.
Let's get this party started!

Our little fish

Sign of a good July 4th party

Yep.  Think he's got it down.

And what made our awesome weekend at home over the holiday even better?
A visit from Teague!  

A little Top Golf on Friday

Practicing his set up

Audrey decided Teague is now called "pirate Uncle Teague".

More balls!

As close to our Boston ducklings as we can get in Texas

Enjoying the last of the cool snap in the weather

I am at a loss of words to explain how refreshing it was to have time to relax and enjoy fun times with our family this week.  It simply meant the world to us.  

We were so at ease and in "weekend mode" that we totally forgot to go into the hospital on Friday morning for Keegan's weekly lab draw!  Luckily, the team allowed us to wait until yesterday to draw them.  I don't know if that was a good or bad thing because we got some disappointing results.  Keegan's white blood cell count and ANC (neutrophils/"baby" white blood cells) had tanked dramatically.  Even on the anakinra, Keegan continues to have a low WBC and ANC, but this was dangerously low.  It means he is even more immune-suppressed and has even less ability to fight off infection.  We rechecked the numbers again today, and they were the same.  So, we are on much stricter "house arrest" right now, and we had to restart a medication called GCSF that is given as a shot.  We will check the levels again on Thursday to see where we stand.  This is not the first time we have seen this from Keegan, but we were a little surprised to see it now.  

So as always, your prayers are greatly appreciated for our Bug.  We would love to see more fun times like we had this weekend the rest of the summer, but we need him to stay stable in order to have more adventures!

(By the way, I realized while editing these photos that I never posted pictures of Audrey's birthday party!  Oops.  Better get on that...)

No comments: