Seattle!

I had a conference to attend in Seattle last week, and it worked out that Chris was able to go with me.  We haven't been anywhere just the 2 of us in quite sometime, and we haven't ever been to the West Coast, except for Vegas (if you count that as West Coast).  Shockingly, all of our flights were on time, and we had uneventful flights.  We left the house at 4:45am est for a 6 am flight.  When we got to Seattle, it was only 10:30am pst!  Our hotel was nice enough to let us check in early and we had the whole day to sightsee.  First impressions of Seattle: 1.  Holy moly was it hilly, didn't expect that! 2.  There were a lot of beggars on the streets (I guess I blocked this out from our days living in Memphis)  3.  There is literally a Starbucks on every corner in Seattle (500 to be exact-too bad neither of us like coffee!  We did miss our sweet tea though) 4.  No Chick fil a in Seattle.  Our first stop was Pike's Market, where they throw the fish back and forth when people purchase them.  It was cool.  The market had everything from fish to produce to flowers to pickles to homemade cheese.  They sold cheap things like touristy tshirts to $500 truffles.  Next, we walked down to the waterfront.  You could go on ferry rides, rides the ferris wheel, or buy fish n chips there.  Next, we walked up to the Columbia Center, which is the tallest building in Seattle (higher than the space needle).  We took the elevators up and got a great view.  Then, back to the hotel for a nap before dinner. While at dinner, we saw "Dr. Anspa" from the old ER TV show days! By the time dinner was over and we were ready to go to bed. We had pretty much been up 24 hours!  On Monday, while I attended the conference, Chris became "outdoorsy man."  He went on a charter fishing trip and then went kayaking.  He even brought fresh flounder home!  On Tuesday, I had more conference to attend before meeting Chris for lunch, then more sightseeing.  We headed over to the Space Needle, then went on a tour boat through the Ballard Locks, and saw boats from the "Deadliest Catch" show and the house from "Sleepless in Seattle."  We also had the best views of the Seattle skyline from the Pugent Sound.  Before we left, Alli requested a seashell, so we took a sea taxi to Alchi Island, Seattle's only "beach."  Suprisingly, people were actually swimming in it and the water was only 52 degrees, but apparently that was warm to them!!! Nuts! Their beach was quite different from our beach...it had rocks, and no seashells, so that's what we brought home to Alli along with a picture of the beach so she'd believe us.  Once we got back to Seattle, we shopped a little, then had a nice dinner and headed to the airport where the red eye awaited us.  We had another "celebrity sighting" while on our flight Edgar Hanson from the "Deadliest Catch" was on our flight back to Atlanta.  It was a fun trip, and we apparently brought our SC sunshine with us because it was sunny and mid/upper 70s the entire time!  I'm so glad Chris and I were able to go, and I'm so thankful my mom and dad were able to watch the girls! 

The Sielicki Family Stands Behind The Murnaghan Family

In case you haven't seen the coverage in the news: Sarah Murnaghan is a 10-year-old little girl with end stage cystic fibrosis.  At this point, she has weeks to live if she does not recieve a lung transplant.  Sarah has been on the children's transplant list for 18 months.  She's also been in the hospital for 3 months now.  Because Sarah is only 10, she's not been considered for an adult lung. Child donors are rare. Sarah's parents have reached out to the news, their representatives, and the Katherine Sebelius, the Health and Human Services Secretary to change this policy to make it fair for children to also receive adult lungs.  Under the current policy, any child under the age of 12 who is on a transplant list is only offered lungs from a child donor that is similar in size.  Children who are waiting for a lung transplant die at 3 times the rate of adults on the transplant list because child donors are so rare. 
With the technology today, adult lungs can be "trimmed" to fit a child, and that transplant can be even more successful than an adult transplant.  However, the policy has not been changed to reflect this. Changing the policy to allow adult lungs be available to children IS NOT taking life from someone else like Katherine Sebelius said, it's making it fair, regardless of age, where the sickest person gets the transplant first.  Yes, changing this policy does put Sarah in the front of the line for a transplant because she's the sickest in need, NOT because she's getting preferential treatment.
I'm so thankful Sarah's family did not give up.  I'm also thankful for the federal judge who has stepped in and has changed the policy for Sarah for at least 10 days.  Hopefully, this will lead to a permanant policy change.  Our family is behind this policy change!
Our family is praying for a miracle for Sarah.  Even though she's now on the adult transplant list for the next 10 days, so many other things have to fall in place. We believe in miracles! 

A Couple Things I Never Thought I'd Have to do or Think About

It's amazing how our life events change our perceptions

Organ Donation:  I never gave the idea of organ donation a second thought until I became the parent of a CF child, who could at some point need a lung transplant.  The idea of people taking the organs out of my body (even though I'd be dead) just really wasn't appealing to me.  Now that my child could be in need of one of these organs, I think differently.  My current thought on organ donation is: In heaven, where I know I'm going, everything will be perfect and I won't need those organs, so why not leave them to give life to someone here on earth who's journey isn't yet complete?  If you've never considered organ donation, please consider it...you could possibly save 8 people's lives with your donation.  8 people, that's HUGE! What better gift to give someone than the gift of life?
Blood Donation: Anyone who knows me, knows I HATE needles.  If they are going into someone else, I'm good, but if they're coming at me, I'm not a fan.  However, sometimes it's just necessary to suck up your fears because it's for the good of someone else.  I speak from my own experience when I say: "It's really not that bad!" They ask you a few questions, prick your finger to check your hemoglobin (that's actually the worst part), sit you in a recliner with a tv, put the little needle in your arm and draw the blood, then you get all the free sweets you want.  The whole process takes no more than 30 minutes.  Who doesn't have 30 minutes once every 2 months to possibly save 3 peoples lives? 
Becoming a Health Insurance Guru: Luckily, Chris and I have always had health insurance.  All we knew was when we went to the doctor, they submitted "stuff" to the insurance company, they paid, and then we got sent a bill, and paid the rest.  It's not that simple!  When you start requiring more from the insurance company than just the occasional doctor's office visit being paid for, they start: denying claims, giving you the run around, and making mistakes. So, you have to be in the know of how the process works and how to appeal when claims are denied.  It's ridiculous to think some person who has absolutely no medical experience whatsoever can make a determination of whether or not the insurance company will pay for a procedure. 
What I've learned thus far...1.  Be nice, yet firm.  Being hateful gets you no where.  You want these people to agree with you.  If you're yelling, that's likely not going to happen.  Appeal to them as a parent.  2.  One person saying no, doen't mean no...there's plenty of people up the chain. 3.  Make your doctor's office be your advocate. 4.  Question all charges...these people are human, billing mistakes are always made.
Becoming an Advocate for my Children and CF: I do not routinely share my political views.  I don't enjoy conflict and I hate when someone pushes their opinions on me.  I believe everyone has a right to their own opinion, and I understand completely that everyone does not agree with me on everything.  That's the great part of being an American, we can have our own opinions!  With that being said, no one knows what's better for my children than Chris and myself, especially not the government. Our kids can't do it themslves, so if we aren't the voice of our children, who will be? 
Last year, the government proposed deep cuts in the funding for research (this includes alzheimer's, cancer, parkinson's, MS, etc., etc.).  Really, of all the things to cut, you'd like to cut reseach?  Why not make cuts to: $100,000 on a video game “preservation” center, $120 million in salaries to dead employees and $15.3 million for the infamous Bridges to Nowhere for instance?
Most recently, the Social Security Administration proposed changes to Social Security Disability Benefits, specifically regarding people with chronic lung problems like CF.  Last year at this time, I wouldn't have a care in the world about this, however, now I do.  Why would the government see it necessary to make it harder for those specifically with CF to receive SSI?  We have been blessed with good jobs, health insurance, etc., so we do not qualify for anything.  However, many CF families are on one income or a person with CF who has defied the odds and lived into their 30's and can't work because they spend hours a day day doing their breathing treatments and have a virtually non-existant lung function...Really? I know the cost of having a CF child with good jobs and health insurance, and to make it harder for people who don't have those things crazy.
The Sielicki family is becoming known with our State Representatives.  I want them to know us, be educated about CF, know our struggles, know our routine, and know that it is their job to represent people like us.  It is NOT ok for them to put politics above people!
Becoming a Fundraiser: I hate for people to constantly ask me for money, and I am not a fan of asking people for money however since we got Lauren's diagnosis, we've just had it on our hearts to fundraise for the CF Foundation.  We feel like we're actively involved in finding a cure by doing this.  Since CF is an "Orphan Disease," (meaning it affects so few in the population) it receives virtually no funding from the government.  The only way a cure will be found is through the funding of the CF Foundation.  So, thank you to all who have supported our fundraising for CF.  It's Lauren's only chance for a cure.

Alli graduated preschool!

Alli has graduated preschool!  She heads to kindergarten at Hunt Meadows Elementary in the Fall.  I know she's ready!  She's so smart and loves learning and reading.  I hope that love will continue!
Instead of doing the typical "graduation" ceremony, Alli's preschool had a "Young Authors Day" where they each get to read the book they wrote and illustrated themselves.  Alli's book was entitled "It's Your Birthday!" It was all about a little girl, her friends, and her birthday party.  Alli was so proud of her book!
We are excited yet sad that Alli is done with preschool.  She's growing up so fast.  She's been with the majority of these friends since she was in the baby class, so 5 years now, and now she'll be making new friends at her new school. She'll still see some of her friends at church, or extracurricular activities, and I'm praying that some of these friends will be the "lifelong" friends you make.

We're so proud of Alli and can't wait for all of the big things she's going to do!