Monday, March 14, 2016

Year SIX starts today!

My favorite duo turns SIX today!! I don't feel old enough (or responsible enough) to be in charge of two 6 year olds, but that's where we are. We've made it this far, and I hope I live to see 60 more. In another stoke of genius, we are having the entire kindergarten class over on Friday night for a birthday party. Donations of wine are now being accepted.

For the first 5 years of Drew's life, we were in the hospital, on average, twice per year. The first year may have been the hardest in terms of admissions, and every year since then we could count on an infection or a flair of symptoms every 4-6 months on average. Ladies and gentlemen, it has been ONE YEAR since the great health fiasco of 2015. We have been one whole year IV and hospital admission free. We haven't even been on oral antibiotics since his birthday last year. I don't think its one thing that helped him, but rather a combination of things. I'm sort of obsessed with his doctor and her willingness to listen to us and work with us to try different things. She definitely plays a huge role here. Another thing we've done is add the Aerobika, an airway clearance device that you blow in to and it vibrates to loosen the mucus in your lungs, but even more, it causes a positive expiratory pressure which opens up his floppy airways and helps him to cough out the gunk way better than the vest or CPT was ever doing for us. In the past year I also started taking him to a chiropractor once a month at the recommendation of another adult with CF who saw tremendous benefit to going. I think its helping with his rib cage mobility, keeping him aligned and loose and able to keep his rib cage flexible so that those little lungs can expand as big as we need them to. He learned to do sinus rinses and does them daily if not twice daily, swims every week at least once and started Kindergarten. He's on n-acetylcysteine (Mucomyst) and takes it orally as much as we can sneak it into a lemon-lime gatorade. We cut down on airway clearance from 3 to 2 times a day when we were treating a fungus earlier this year and he was being pushed to his limit with medications and treatments, and he got his own iPod.

I think a combination of all of these things has left him in good health and relatively good spirits. I also don't underestimate the role that friendship has played in his good health. Isn't there some saying that goes "Healthy mind, healthy body"? If not, I'll go ahead and author that, because I believe that the connections that he has made to some friends in his class and on his basketball team make him feel like he is a part of something, encouraging him, even if subliminally, to stay well so that he can continue to be a part of that. We had previously turned down play dates to get in breathing treatments and now we work around them. He gets everything he needs, medically speaking, but the social support of friendship was a previously undervalued component of his health. We've also expanded his freedom to make some choices on his own. I talked about this a little in another post, but we realized and appreciate that he needs to be permitted, in as much as possible, to keep shaping the story of his like in the world; to make choices and sustain connections to others according to his own priorities. We schedule his doctors appointments on days off of school and work in tests that need to be done after school and on the weekend. I don't know what parts of what we are doing are helping the most but we don't feel a strong need to make any changes at this point!

I just returned from a week in DC at a Center for Education and Research on Therapeutics (CERT) meeting about Precision Medicine followed by the annual Cystic Fibrosis Foundation Volunteer Leadership Conference. It was great to see so many new faces in attendance at VLC this year, and sad to see some old friends missing. I, myself, wasn't actually invited to attend this year, but the camaraderie that I find that these gatherings of hundreds of CF parents who are traveling the same path in life helps to carry me through for another year, and so I registered and attended on my own. I was a little disappointed that there wasn't more time to hear from Preston and Mike Boyle and Bill Skach on the state of the science. In years past, it felt like we would get a pretty thorough briefing, and this year felt like we had barely scratched the surface before we were out of time. I did learn that the CFF is planning to play a larger role in lung transplant, working both scientifically to determine why lung transplant survival rates are significantly lower than some other organs, and also with families through the process, though the details of both were a bit vague. I'm hoping we will be learning more soon. Kathy Sabadosa gave an amazing presentation on the CF Care Model of the Future, the C3N work that I've been involved with for the past several years. We are in the weeds of creating the pilot learning network, the group of 15-30 CF care centers that will start working together, being truly transparent with their data, and learning with one another to improve not just the clinical metrics like lung function and BMI, but things that are important to patients and families like quality of life and access to quality "best in class" care. We have a monthly newsletter that we have started to push out to folks who have been involved with the project, wish to learn about the work, or hope to get involved. While its still a bit technical, you are welcome to check it out and subscribe to follow our progress -

Hands down, the best part of VLC this year was hearing one of the co-founders of the CFF, Phyllis Kossoff, share with us her journey through this life. She was and continues to be a powerhouse, doing what needs to be done with others in the CF community. She touched the hearts of everyone in that room, and her "We WILL do this" attitude empowered us to keep going. I'm always grateful for the opportunity to meet amazing people who are doing amazing things!