I haven't posted a blog in about a month, but it's not for lack of interesting foods, books or CF Mamma stories. It's quite the opposite, actually. I haven't had the time (or energy) to write.
And now that I'm sitting here, I don't know what to document.
Should I write about that week Avie was behaving as if she was going to get sick, and so I increased her therapy to 4 times a day, hoping to cut off whatever bug might be trying to settle in? Because I feel like I kicked that sucker to the curb and Avie turned a corner the following week without ever really coming down with anything. I mean, it WAS a thought of mine to talk about child behavior patterns as they relate to a child coming down with a cold. I seem to know a couple days in advance of Avie getting sick and that time I started more therapies based only on my intuition.
.... yet, now she is actually pretty sick and I try as I might, I just couldn't keep this one away.
So, maybe I should jot a little note about how the Orkambi trials for 2-6 year olds went well and, with fingers crossed, Avie might be able to take it next year. In addition to that exciting news, the average life expectancy for CF sufferers was just increased to 47 years old. I mean, that's all super exciting stuff! But part of me suspects that the life expectancy increase is more a reflection of fundraising and drug research (like the Orkambi trials) than it is for actual current patient life-span.
I'm not trying to be a downer, here. This is all really great news- and it also serves as a sign of more things to come. I'm just not really in the mood to talk about 'happy potentials' because I just put my poor, sick baby down for a nap and I'm fearing she may have to go on yet ANOTHER round of antibiotics. The doctor's warning about adding something to her daily treatment regimen is still loud and clear in my head. The thought of another pill/therapy/medicine that she will have to do every day, FOR-THE-REST-OF-HER-LIFE just isn't getting me in the celebratory mood.
I mean, I had JUST told my husband that it would be in Avie's best interest to stay as healthy as possible until she can take the Orkambi- thinking that if she was on that drug then maybe her colds/coughs wouldn't be so severe or frequent. As if that would help us avoid sticking another thing onto her plate every day. Just another "must-do" for her... forever.
Okay, so why don't I finally talk about the Weston A. Price Foundation that I stumbled across last year, and alluded to in some of my blogs. Because I finally got a piece of really great literature about this whole 'Traditional Eating' thing and I'm starting to incorporate it into my every day cooking practices. The premise is about healthy guts and nourishing your body with all these important things that your body needs in order to function and grow properly. Things that could help (in theory) with the affects of Cystic Fibrosis on the body's processes. There are really great recipes in this book and explanations about why each one is good for you to eat.
Like the big pot of beef stock I have simmering on the stove right now. I could blog about all the really great stuff that stock is supposed to help Avie's body do, because Lord knows she will need all the nourishing she can get if we need to pump her full of antibiotics again.
Hmmmm... clearly I have only one thing on my mind right now.
