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