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.

Busy month

It has been a month since my last post.  Life has been very busy during that month!  My fundraiser was a big success.  We raised over $4000 for the CF Foundation.  I was so happy to see a lot of old friends as well as new friends and family come by to show their support.  It was really nice to reconnect with some old friends I had not seen in a while.  It was a lot of work, but definitely worth the effort, so I will be making it a yearly event.

Monkey just finished his month of Tobi, which more than doubled the time in took to do his treatments each day.  It was all we could do to get him fed, get his treatment done and give him his bath and get him ready for bed each evening.  I think we only got him to bed on time about twice during the last month.  Then, we had to wake him up early each morning so we would have time to get everything done in the morning before we had to leave for school/work.  He was exhausted, we were exhausted, and it felt like his whole little world was treatments.

I am so glad that is over with (for now), but am a nervous wreck about whether or  not we got all the Pseudomonas.  He goes back to clinic for another culture on Tuesday, and I think I will have this sick feeling until the culture results are in.  If this culture still grows Pseudomonas, they will likely admit him for a round of IV antibiotics for about 2 weeks. 

I am also nervous because it will be our first time at the Tue/Thu clinic, with new doctors, and I will likely have to go by myself!  Monkey will have to wear a mask while at clinic, something we have never successfully gotten him to do.

So there are a lot of unknowns right now, and unknowns and change make me very nervous.  Trying to keep my energy focused on positive things, like the Great Strides walk next weekend.  To join or donate to Team Lex Expess, visit my Great Strides homepage here. 

We are forever grateful to all the people who support us and show Monkey how many people care about him!

                                             Pictures from the Lex Express fundraiser