It has been a tradition for many years now that we spend my birthday (July 2nd) and the week of the 4th at the beach. This is the first year since Anna’s birth that we fulfilled the tradition. Two years ago we spent my birthday at Johns Hopkins getting Anna’s first dose of enzymes. Last year we spent the 4th of July in bed long before the fireworks. But this year we made it to the beach!
We haven’t traveled much since Anna was born but this time it was markedly less stressful than in the past. Just visiting my parents house an hour away has gotten my CF packing down to an efficient routine. It’s only gotten efficient because of a few mistakes though (hint: always check your fridge when packing meds because refrigerated antibiotics can cause extra hours of driving when left behind). Luckily we had no antibiotics to pack this time! I actually felt a lot of peace about packing because I knew anything I forget I can always get there as long as I have Anna’s medicines, vest, and nebulizer.
I made sure to consult with her doctors before our trip and they said that a trip to the beach is always a good thing because the salt water/air is therapeutic. One of the nebs so does twice a day is hypertonic saline which is pretty much just really really concentrated salt water so she was just getting a little extra dose We let Anna use a baby pool while on the beach just for the week and then got rid of it. CFer’s are told to stay away from pools like that because water can remain in it and bacteria like pseudomonas can grow. We asked the doctors and they made it clear that using a brand new pool just for the week was safe as long as it dried out outside every night. One of the important things we needed to keep in mind was keeping Anna cool on the beach, so the pool was helpful for that. We also used a big canopy to set up a shady camp, although she much preferred running around in the sun! We made sure to keep applying sunscreen so that she didn’t get too much sun, the doctors made sure to tell us to not allow her to get a sunburn. CF kids can easily get dehydrated since they sweat out a higher concentration of salt than other people. Because of this we had to make sure we were replacing the salt her body was losing so we kept her snacking on salty snacks like chips and pretzels and she drank nice cold Gatorade on the beach. Overall she didn’t have ANY health problems at all. She did great!
While we were on the beach I was definitely feeling the CF pressure a little bit and just making VERY sure she didn’t get dehydrated but in general CF was really not a major part of our vacation at all. We had such a fun time with family and friends, and my kids are total beach bums! They loved everything about it!
We loved it so much that we went 3 more times
We soaked up every minute of summer and were blessed with incredible health for Anna. She has been consistently gaining weight, baseline cough is still non-existent, and she is potty trained! So we had a major couple of months. She did a course of antibiotics a few weeks ago after she caught a little cold from her big brother being back to school. The antibiotics did their job and she cleared up over time. At her last clinic appointment she cultured a small amount of normal staph (normal meaning not MRSA or anything concerning) which is common and doesn’t cause any problems. We are still crossing our fingers and praying for these kind of culture results because we are still SO blessed that she hasn’t cultured anything bad, ever.
While we’ve been taking some time to just enjoy life, we haven’t taken any time off working toward a cure. We are already planning next year’s Anna’s Amazing Race that we promise will be more amazing than ever! And we are lucky to have so many of our loved ones behind us who are consistently supporting our cause. Two of our friends ran the NYC marathon last week for Team Boomer raising $3,500 for the Cystic Fibrosis Foundation. And WebpageFX, Alex’s the most incredible and generous employer, donates year round using the Amazon Smile program and making a cure for CF one of their passions. So the fight continues! And in the meantime we are just purely thankful. We are thankful for everyone reading this, for everyone supporting our family and the search for a cure, and for this beautiful time in our lives with our babies.
Here are some pics of our summer and our SUPER Halloween!