Sunday, June 24, 2012

Seven Hundred Twenty

Summer is in full swing here in our house. After we pull ourselves together in the morning, we spend out days running around outside, playing in the pool, going to parks, playing with friends, and having all sorts and kinds of fun. I can't complain to much about how things have been going. Drew is halfway through his Cipro treatment. I've been reading some CF message boards about how people deal with pseudomonas that isn't the aeruginosa strain. I'm getting some mixed messages, where some peoples clinics only get concerned about pseudomonas aeruginosa and don't even treat the other pseudomonas strains, and others treat all strains of pseudomonas the same way, with Tobi and oral antibiotics or IV antibiotics. Since I don't have any experience with anything other than aeruginosa I don't know what the best course of action is. I will say that having Drew on antibiotics right now is the best thing for him, as Ella and I both have a nasty cough and lung infection. We are on antibiotics and hoping that the remaining 3 don't catch anything. I think that the fact that we've got Drew on antibiotics is kind of protecting him from this and I am very very grateful for that.

Drew has started to show the slightest level of protest against taking his enzymes. I really think its a control thing. He is forced to do his breathing treatments and airway clearance so many times a day and he has no choice when it comes to going to the doctor and having tests done all of the time. So the things in his life that he has control over, like eating for example, and now taking his meds, he seems to be fighting back. Again, its just ever so slightly. He doesn't fight us on any of the stuff he has to go through every day, month after month. He is such a good kid with all that he has to go through ,but I don't know what you do when he needs this medicine to eat and to survive and to thrive and he doesn't want to take it anymore. 720. That's how many pills Drew takes in a month. I'd probably protest too if I had to swallow 720 pills every single month, 24 pills every day. Think about that next time you think you're taking a lot of medicine!

We are heading out to Philly in just over a week and I couldn't be less ready. I haven't even thought about packing and haven't had moment to think about the logistics of the actual trip. I'd love to drive through the night when they are all asleep and not screaming at me and at eachother because someone touched someone or having to watch Toy Story is the most horrible thing in the world. Between feedings and diaper changes and potty breaks and movie requests and sippy cup refills I suspect it will be a long trip. I should give them a little credit as last year we drove all the way to Charleston and only made 1 stop the whole way. We also did not have a 3mo old with us. Now that I'm typing about it I'm starting to think of all the things I need to pack and where and how. 

It will be so nice to be someplace else for a couple of weeks. While the packing and the travel and the disruption in schedules may be a pain, having someone else there to help me during the day will be a godsend. Equally as exciting (for me, not you) is that Martin will be here remodeling our family room that I have been dying to have remodeled since we moved in 3 years ago. I cannot wait for the wood paneling to disappear! 

I don't know that I'll have much time to blog before we take off next week. I really hope that all goes smoothly health wise. This will be the longest we are away from our clinic. Drew's health has generally been pretty good, but I won't be able to run down to the hospital for a quick check up if he catches something or isn't acting quite right. We do have CHOP not to far away and if he needs to be see our doctors can contact the doctors at that CF clinic. But I hope we can just go away for a couple of weeks and relax and have fun!

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