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2 Bostons, 1 Preemie, & 65 Roses

Tuesday, May 12, 2015. Great News from the FDA! This afternoon, the FDA Advisory Panel recommended approval of the latest CF corrector drug, formerly VX-809/lumicaftor combined with Kalydeco, now known by it's official brand name, Orkambi! The final vote was 12 yes, 1 no. This is not. At the same time, I'm rejoicing for my many friends whose loved ones will benefit from Orkambi, and any future correctors that are better! I'd be lying if I said I wasn't tense today. I knew the panel recommendations we...

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2 Bostons, 1 Preemie, & 65 Roses | bostonsandapreemie.blogspot.com Reviews
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Tuesday, May 12, 2015. Great News from the FDA! This afternoon, the FDA Advisory Panel recommended approval of the latest CF corrector drug, formerly VX-809/lumicaftor combined with Kalydeco, now known by it's official brand name, Orkambi! The final vote was 12 yes, 1 no. This is not. At the same time, I'm rejoicing for my many friends whose loved ones will benefit from Orkambi, and any future correctors that are better! I'd be lying if I said I wasn't tense today. I knew the panel recommendations we...
<META>
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1 posted by
2 becca
3 no comments
4 labels cf
5 cf drugs
6 quarterly clinic visit
7 cf clinic
8 change
9 what's change
10 cue laugh track
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posted by,becca,no comments,labels cf,cf drugs,quarterly clinic visit,cf clinic,change,what's change,cue laugh track,story,design,voicing,summary of thoughts,not so much,my rating,labels veggietales,alleluia,still reading,cool,gi issues,parenting,advocacy
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2 Bostons, 1 Preemie, & 65 Roses | bostonsandapreemie.blogspot.com Reviews

https://bostonsandapreemie.blogspot.com

Tuesday, May 12, 2015. Great News from the FDA! This afternoon, the FDA Advisory Panel recommended approval of the latest CF corrector drug, formerly VX-809/lumicaftor combined with Kalydeco, now known by it's official brand name, Orkambi! The final vote was 12 yes, 1 no. This is not. At the same time, I'm rejoicing for my many friends whose loved ones will benefit from Orkambi, and any future correctors that are better! I'd be lying if I said I wasn't tense today. I knew the panel recommendations we...

LINKS TO THIS WEBSITE

hydrobabies.blogspot.com hydrobabies.blogspot.com

hydrobabies: January 2015

http://hydrobabies.blogspot.com/2015_01_01_archive.html

Life with our 25 weekers. Here we are on that hospital flow again. Aiden's been really sick lately and so we finally brought him to the ER today. Mainly to check for a shunt malfunction. 14 hours later and we're shacked up in a private suite (it's the little things, right? At this point we know it's not the shunt. Poor munchkin is not happy 😞. Subscribe to: Posts (Atom). From the fullness of grace, we have received one blessing after another" John 1:16. It doesn't define us. Our Valentine's Day Surprise.

hydrobabies.blogspot.com hydrobabies.blogspot.com

hydrobabies: May 2014

http://hydrobabies.blogspot.com/2014_05_01_archive.html

Life with our 25 weekers. To my kids on mothers day. Three years ago today you were merely a cluster of cells. Ok, maybe you were something more at this point but whatever. I was newly pregnant. We already knew there were two of you in there. Our minds were already blown and our hearts were already filling with love for these two human beings that would create our family. Five [updates] for Friday. This is pretty much how he relaxed the entire time in the hospital. 2 Easter came and went in a blur. T...

hydrobabies.blogspot.com hydrobabies.blogspot.com

hydrobabies: January 2014

http://hydrobabies.blogspot.com/2014_01_01_archive.html

Life with our 25 weekers. On this very day. We are so proud of you each and every day. You are truly a blessing and have changed our lives in more ways than one. Diclaimer: Most of the video is cute, baby kisses. Some of it contains a child whining. I apologize in advance. Seems as though throwback Thursday is a phrase that will soon be coined as an official word in Webster's dictionary. Oh no wait, it's a phrase, not a word. So that won't work. So what, wikipedia or something? And then there was sleep.

hydrobabies.blogspot.com hydrobabies.blogspot.com

hydrobabies: March 2014

http://hydrobabies.blogspot.com/2014_03_01_archive.html

Life with our 25 weekers. This month is Cerebral Palsy Awareness Month. And he was right. Aiden, who does not have CP, has been developing pretty typically. He may be on a slightly delayed schedule, but he is hitting all of his milestones. And in certain areas, such as speech, he is exceeding our and his therapists' expectations of him. I walked in the door after work that day, and baby boy was using his walker like a boss. Things have been super busy at our house as always, but sort of calm at the same ...

hydrobabies.blogspot.com hydrobabies.blogspot.com

hydrobabies: December 2014

http://hydrobabies.blogspot.com/2014_12_01_archive.html

Life with our 25 weekers. Remember that time when i stopped blogging? Good, because although I've neglected this space, I never want to stop. Ever. So, I guess I'll just wish you all a Happy New Year. One filled with health and wealth. And not just monetary wealth. But emotional wealth. May you love those around you and feel what surrounds you. I'll also leave you with some recent photos so you don't forget what the kiddos look like :). Subscribe to: Posts (Atom). Wife to Seamus. Mother to Aiden and ...

hydrobabies.blogspot.com hydrobabies.blogspot.com

hydrobabies: February 2014

http://hydrobabies.blogspot.com/2014_02_01_archive.html

Life with our 25 weekers. And then we were complete. This weekend, I gave the boys a mini cupcake before then napped. To illustrate just how different A&R really are, here is what happened as soon as they got their little hands on those delicious treats:. Ryan dug right in. He loves sweets, just like his momma. And Aiden, well he decided to smash his cupcake into Percy's face before eating it. Sharing is caring? If you're not sure what that means, just keep reading. Also, I just made that up. Herself, an...

hydrobabies.blogspot.com hydrobabies.blogspot.com

hydrobabies: December 2013

http://hydrobabies.blogspot.com/2013_12_01_archive.html

Life with our 25 weekers. In honor of the last day of the year, I wanted to do a little something different that I've seen other bloggers do. Here are my top ten posts from 2013. Won't you take a short trip down hydrobaby lane with me? 10 To their health. 7 You never know what the future holds. 2 Shunts are scary. This year a lot has happened for our family, and especially our boys. I got to meet some of the most wonderful women who helped me navigate this unique journey as a special needs mom. Thanks fo...

hydrobabies.blogspot.com hydrobabies.blogspot.com

hydrobabies: October 2014

http://hydrobabies.blogspot.com/2014_10_01_archive.html

Life with our 25 weekers. Today is World CP Day. To some, this may mean nothing. To me, it is everything. Even though I do not have CP, it is my world. And it's my husband's world. And Aiden's world. And most importantly, it's Ryan's world. In honor of this day, I wanted to share some videos of my sweet boy. Because although he struggles with most physical tasks daily, he does not let that stop him from being happy and enjoying his life. Subscribe to: Posts (Atom). It doesn't define us.

ourvalentinesdaysurprise.blogspot.com ourvalentinesdaysurprise.blogspot.com

Our Valentine's Day Surprise: June 2013

http://ourvalentinesdaysurprise.blogspot.com/2013_06_01_archive.html

One IVF, Two Embryos, Two Heartbeats, Two Micro Preemies turned Toddlers.Faith, Courage and everything in between. Monday, June 24, 2013. DIY Gel Nails At Home. Apparently there is also enough of the gel/activator to do a fill in or two too - so we'll see how the next few days go and if I make it to the fill in stage. If think at that point I will likely use a color polish on them too. Saturday, June 22, 2013. I am a day late but yesterday was National ASK Day. Friday, June 21, 2013. How I am feeling:.

ourvalentinesdaysurprise.blogspot.com ourvalentinesdaysurprise.blogspot.com

Our Valentine's Day Surprise: August 2013

http://ourvalentinesdaysurprise.blogspot.com/2013_08_01_archive.html

One IVF, Two Embryos, Two Heartbeats, Two Micro Preemies turned Toddlers.Faith, Courage and everything in between. Wednesday, August 28, 2013. It's been awhile but I thought our adoring fans would appreciate a glimpse at these cuties again. Addison loves making faces in my camera phone. I usually end up laughing at her selfies. She also likes to encourage me to do leg lifts "Up, Down" she tells me. Again with the funny faces. I love this one. He's been so smiley lately. But here she was singing. Then cha...

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2 Bostons, 1 Preemie, & 65 Roses

Tuesday, May 12, 2015. Great News from the FDA! This afternoon, the FDA Advisory Panel recommended approval of the latest CF corrector drug, formerly VX-809/lumicaftor combined with Kalydeco, now known by it's official brand name, Orkambi! The final vote was 12 yes, 1 no. This is not. At the same time, I'm rejoicing for my many friends whose loved ones will benefit from Orkambi, and any future correctors that are better! I'd be lying if I said I wasn't tense today. I knew the panel recommendations we...

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