4th post of the day - I don't like getting so behind on the blog where I have to post several things at the same time!
On Wednesday I took Mackenzie to her CF Clinic visit (Jason was out of town). She had a very good check up. Great weight gain, clear sounding lungs and she was so excited to tell Dr. Warren that she's running Cross Country. Her PFTs were down BUT her allergies are bad - so, is this the cause?? We have finally scheduled her allergy skin test for Monday, October 12 so I hope we finally get this figured out. I'll hear from Dr. Warren this week to see what her culture results are and if she needs an antibiotic.
I know several of you fellow CF families are familiar with the Power of Two. I was not until I received a message from a friend from elementary school (facebook really is amazing!).
From Laura on September 20:
My boyfriend, Nickolas Rossi, is a cinematographer. He is going to Japan on October 1st to shoot a documentary about twins with cystic fibrosis. They both have had double lung transplants in the US but are from Japan, and knowing you, and your research, you probably have heard of them? Below you will find the website. They are going to Japan to ask Japanese officials to allow transplants as it is not readily available there. My boyfriend will be shooting everything. The women live in San Francisco now and on Sunday they will document them getting ready for Japan, talking about the medication they have to bring with them. I would love you to be facebook friends with Nickolas as he travels through Japan with these ladies, as he documents. Perhaps you could help spread the word. This film will premier at SUNDANCE. You and your family are a bright figure in all of this and I want to make sure that the word is spread the right way, which you do well. The website is http://www.thepoweroftwomovie.com/the-book/ Check it out and let me know your thoughts!Love,
Laura
She sent this on September 20 and I wish I would have shared it sooner! Please, check out the website and follow them on Facebook and Twitter.
4 months ago
5 comments:
Good to hear her good clinic report! When PFT's are down due to allergies I don't count them. :-)
Yeah for a good report!
Thank you for the sight! I've just went there and signed up to follow! I'll be sure to pass it on!
OMG! I know the twins! We went to CF camp together for years. They are older than me, but I know them! So great...I didn't know about this documentary! So cool. They were treated by my previous doc in LA and docs at Stanford!
How neat! I'll go check it out!
And I love getting caught up with all your posts!
Congrats on the good CF Clinic Report!
Thanks for posting about the documentary, I had not heard anything about it!!!
I love the picture of Peyton as a little rock start at the Justic Party :)
Post a Comment