Faith's had a great summer...a few more birthday parties, gatherings, and swim days than ever before. We also went on a quad trip recently that she loved: caught a fish with daddy, counted stars through the tent and drank hot chocolate with marshmallows. Oh yes, and she was continually worried that she'd run out of rocks because she through hundreds into the river...
Morgan and I went to the CFRI conference in Redwood City in early August and learned a few new things from the fantastic speakers and met some wonderful people as well. We scored a Pari Trek during a Q&A, which is basically a portable nebulizer. So, rather than having to be plugged into the wall outlet somewhere doing treatments, Faith can do them on the go anywhere. Her favorite new spot is in the basket on her bike while she's riding it (though I don't think that's quite the idea the designer had in mind). The theme was all about pearls and how precious they are for so many reasons. We were able to buy a shell to take home and open with Faith to find the pearl inside and place it in a necklace. It was a Wish Pearl, so we were to make a wish before opening it to reveal which of 5 or so promises it would reveal. Faith wanted me to go first so I wished that one day she'd no longer have to do treatments...she really liked that one, so it became her wish, too. We opened up the shell to find none other than the pink pearl....the promise of health. "Thank you, thank you, thank you," I thought to myself, "How fitting."
Faith's body has yet to let go of the light cough she's had since the June fires and she's therefore been on a few extra breathing treatments each day. We saw the pulmonologist 2 weeks ago, who switched her nasal spray and told us not to let up on treatments until the cough is gone for 2 full weeks. Then last week we saw the CF Team, they said she's looking great overall...a few minor tweaks, a throat culture, a stop to feed the ducks at the pond and we headed home. Then yesterday, we got the results that the throat culture came back positive for Pseudomonas (PA)....ugh, here we go again!
She cultured this only once before, about 2 years ago - we hit it hard with treatments and haven't seen it again until now. It's one of probably the top 3 BAD bacteria we don't want her little CF body to have to try to fight off. It's also a bacteria that is very common everywhere...we're talking soil and water, etc. and something that you or I could EASILY off. PA very much likes defenseless environments though (ie. my baby's little respiratory system). Luckily, it still doesn't mean a hospital stay. Though it does mean 2 weeks of special oral antibiotics and 2 MORE breathing treatments per day every other month for six months. Good times, right? Ugh, I hate CF and I hate it more than anything for putting my precious little one through any form of suffering. PLEASE pray that we kick this bacteria in the butt and get rid of it yet again for at least another 2 years!
One last positive lately is that we got a Wii! It's so funny and fun! Faith is pretty good and really enjoys the bowling, but also likes the golf, baseball and "powing" or shooting the balloons. THIS will definitely come in handy while doing all these treatments! I'll have to take some pictures....
