I don't know where Ive been. Checking in on my blog as a reader more than the author, I suppose. Expecting the pages to write themselves....expecting my thoughts to magically appear on screen.....yeah, well, it was a nice thought anyway.
Natalie's percussor is a general success. She doesn't mind the machine and learned how to turn it on, proper placement, and to go find a "blankie" to wrap herself in by the end of the first day. She was even asking for more treatment time.....*score*
Our clinic appointment was a success as well. She's gained three pounds in the last two months which throws her into the ***72nd*** percentile for her weight. wooohooo! yay for 6 pieces of bacon at breakfast, heavy whipping cream, and McDonald's :)
All of this very good news was followed up by a clear culture result.....that's two cultures now that have been negative for PA. Wooohooo! (again)
So we are doing well, and that makes for a happy mommy.
I'm sure everyone knows by now about the excellent results Vertex is reporting for VX 770. Natalie doesn't have the mutation needed to benefit from this drug, but its success is more than whether or not Natalie gets it....its about a doorway....an opening....a beginning.....proof that we are on the right track.....and hope, hope that within Natalie's lifetime Cystic Fibrosis will be a disease that you "live with" not "die from".....like Diabetes or something.....maintenance meds and maintenance treatments, diet, exercise.....hmmmm what a thought.
I am going to leave this post here. There are groceries to be gotten, laundry to be put away, dishwashers to be unloaded, floors to be done, a little girl to be chased....and so my day starts.
my best to you. ~j
Glad to hear Natalie's doing well. It sounds like you're in a calm period right now. Hoping it lasts forever. The previous post told me you're great mom, which I already knew, and will do anything for your daughters. I think the universe will continue to conspire to give you everything you need, too, because you care so much. Best to all of you.
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Hey there my friend. Thank you for your kind words. I hope you are right. We are in a state of calm and I am trying to be grateful, but sometimes I tend to walk lightly, expecting things to fall out from under me at any moment. I hope you are well, and I say that not halfheartedly, but with the utmost sincerity. Think of you and worry about you often. My best to you and your girls, always. ~juli
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