Monday, September 5, 2011

This is your life.

Our big news is public. We're expecting baby #4 on or around March 21, 2012 and I'm excited. There are lots of questions I've gotten since I started telling people - are you nervous? will you get the baby tested for CF before they are born? will you find out the sex? The answers are no and yes, no, and no. I'm not terribly nervous. Of course I hope and pray that this baby will be born without Cystic Fibrosis and there is a 75% chance of that. The baby could be tested via DNA test done by amnio while in my belly, but it wouldn't change anything for us so we're not having it tested until its born. Honestly, there is nothing that they can do while I'm pregnant if they found out that the baby has CF, so there is no reason for the risks associated with an amnio. We also will not find out the sex. We didn't find out with Ella and I loved the surprise. We only found out with the twins by accident and having had kids both knowing and not knowing, I strongly prefer the not knowing. To each his own, but for us, the surprise in the delivery room is worth the wait. We're excited, and I hope everyone who reads this is equally as excited for us.

I was on a conference call last week with the the Public Policy team of the CFF and the other State Advocacy Chairs to discuss how to expand our reach and have a greater impact on government. I told Martin after the call that I just don't understand how all parents and friends and relatives aren't as involved in this as they can be. Congress isn't just going to make these big decisions willy nilly without hearing from you and I what is important and why its so important. I encourage and urge all of you to join the CF advocacy program, sending letters to your local decision makers that will affect and improve the quality of life for kids like Drew.

Tomorrow we have to go into the hospital for the day to get a PICC line to start IV antibiotics again for 2 weeks. Drew had Pseudomonas on his last culture, but the last time that he grew that before this was almost 6 months ago. Therefore they're not considering him colonized and cycling him on Tobi. Either the Pseudomonas went away and came back, or it had been suppressed so well by the last round of IV antibiotics that it wasn't showing up on his cultures or causing any problems. Either way, because it was gone for more than 8 weeks, they're making another attempt at eradication with these IV antibiotics. When talking with our doctor, she mentioned that in talking with several other doctors in our practice that there is some new evidence to show that when trying to eradicate Pseudomonas, a two week course of IV antibiotics followed by 2 cycles of Tobi (28 days of inhaled antibiotics) seemed to show more promising results. We're not certain that we're going that route yet, but should know by the end of the week. As for tomorrow, Martin will be taking Drew because the IV is done under floroscopy (live x-ray) and prego mama can't be in there with him. Also, tomorrow is Ella's first day of preschool and I simply can't miss it :)

If I sparked your interest in writing your members of congress, here's what I recently sent to mine. Feel free to copy, paste and add your own two cents. It will make a difference, I promise it will! This is my passion.
While I understand the challenges you face in reducing the deficit and balancing the budget, cystic fibrosis patients need your help to ensure that NIH can fund research that can produce new treatments, and the FDA can swiftly and thoroughly review them. These critical agencies must be able to move new therapies quickly from bench to bedside.

Drew looks healthy on the outside, but he is fighting a progressive and fatal disease. Everyday, Drew spends between 2 and 3 hours doing airway clearance and breathing treatments to keep his lungs healthy and clear of mucus. We have cabinets full of medication that Drew must take on a daily basis. The best part about Drew is that he does it all with a smile on his face. We are learning more every day, and, through Drew, we've discovered a new world of support, education, and opportunity for those living with Cystic Fibrosis. Unfortunately, it does not change the fact that there is currently no cure. We can change that!

This year has been an amazing one for the entire CF community. The money that WE have raised over the past many years helped to develop the first drug to target the basic defect of Cystic Fibrosis. That drug, VX-770, will be going to the FDA for approval late this year. I can only imagine how different our lives will be with this drug and the others in the pipeline. I can only imagine my baby healthy, without Cystic Fibrosis. We are so close to a cure. It's almost here, but we still need your help.

Strong, sustained NIH funding is essential to national priorities of better health and economic vitalization.

These important agencies contribute to the nation's economic strength by creating skilled, high-paying jobs. In 2007, NIH grants and contracts created and supported more than 350,000 jobs across the United States. A well-funded FDA can help ensure promising research is translated into new cures and reduce the cost of health care on the American economy and for American families.

Once again I urge you to actively support robust funding for NIH and FDA in Fiscal Years 2011 and 2012 and help us create better tomorrows for those with cystic fibrosis and all rare diseases.

Thank you again for your time!

1 comment:

  1. Congrats Erin! I hope that everyone is as excited for you as I am! Praying for a healthy pregnancy for you! What a blessing!!