Monday, May 5, 2014

Great Strides and Great News

The Columbus Great Strides walk was yesterday and Team Lex Express had a great turn out.  The weather was nice, just a bit windy, and we really enjoyed a lovely afternoon surrounded by family and friends.  Plus we raised over $5000.  It is hard to explain how full it makes my heart to see Monkey running around, playing, surrounded by all the people who came out to show how much they love and support him.  To everyone who came yesterday, thank you from the bottom of my heart!
                                                              Team Lex Express 2014

 Monkey in his special green shirt that identifies him as a cfer.  People with cf can pass dangerous bacteria to each other and are supposed to stay away from each other.

Today I got the most wonderful news since I found out Bug (Monkey's baby brother) didn't have cf.  After waiting anxiously for almost a week, I finally heard from the cf clinic about Monkey's last culture.  It grew absolutely NO Pseudomonas!!  I was so ready to fight for more aggressive treatment that I almost didn't believe what I was hearing.  I asked her 3 times: "none?", "all 3 strands are gone?", "even the mucoid strand didn't grow?"  I think I was floating on a cloud for a while after that phone call.  I wanted to tell everyone I saw, even strangers!

This little battle was just the first of many lung damaging monsters we will have to fight.  It was really scary for me and made everything far too real.  I just wish I could freeze time until that cure comes.  I know it's just around the corner, I just wish it would hurry up and get here.

Friday, May 2, 2014


Monkey had "big boy" clinic a few days ago.  He did a pretty good job!  My dad came with me.  It was the first time he has been to a clinic visit since Monkey was teeny tiny and we were learning about what cf is and how it will affect our family.

The first hurdle was getting Monkey to wear the mask.  We all (and I mean just about everyone in the waiting room) put one on to help coax him to wear it.  It took a little bit of bribery, but he put it on and left it on much easier than I expected him to.

He even stood on the scale and let them measure him without a fight, things that always resulted in tears during newborn clinic.  He did still cry when they took his blood pressure and pulse ox, but he got over it pretty quickly.  He sat nicely and played ipad with Poppy most of the time we were in the exam room.  But he wasn't dancing around the room with a big smile like he usually was when we went to the newborn clinic and he knew everyone.

The throat culture was horrible.  It took 4 of us to hold him still so the doctor could get it.  He was so angry afterwards that he screamed and threw things around the room.  He felt betrayed by my dad and me because we had helped hold him still, and he couldn't be calmed down for several minutes.  He didn't want anything from us (even his beloved tootsie rolls).  The doctor came in and tried to give him suckers, and finally calmed him down by offering him a Donald Duck sticker. 

So now we wait for the results of  the culture.  I was hoping to get the call today, but will now have to wait all weekend.  I'm very anxious about the results.  I feel like the doctor was too quick to say he will probably just always have it, and I know there is more we can do to fight it, and it can be beaten!  Hopefully the culture will come back clean, and I won't have to worry about it, but I am prepared to fight to treat it more aggressively if I have to.  I wish there was a way to know for sure what is best for Monkey, but I just have to go with my Mommy-gut.  Waiting sucks!