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Showing posts from May, 2010

A terrific weekend

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We had an incredible weekend in Akron and Cleveland!  We drove to Cuyahoga Falls, OH on Friday and stayed in a beautiful hotel overlooking the falls. We brought our good friend Emily with us, she is an Irish Dancer as well and was a great help for Hannah with practice and warming up! Hannah and Emily at our Hotel overlooking the falls.  There was a beaver on the other side of the river that we had fun watching.  Saturday morning we arrived at the Akron Feis.  There were 10 stages and over 1000 competitors, this was a much large feis than the last one we attended.  Hannah had 12 competitors in her class and danced three different dances.  In her first dance, the reel, she placed first! In her second dance, the light jig, she placed 5th. In her third dance, the slip jig, she placed 2nd!  It was a very successful day for her!  Look at all the people! On Sunday we were at the Wolstein Center on the campus of...

Allegany Presentation

As usual, your prayers were powerful!  I think yesterday went great!  The kids were really attentive and seemed to be interested in what I had to say.  I wasn't as nervous as I thought I would be, I know that was thanks to your prayers.  I thought I would share the intro. with you.  The audio isn't very good, but at least you can get a feeling for how I set the stage.  Make sure you pause the music player before you start the video. We are off to Akron today.  Hopefully it will be a great weekend with Hannah doing her best! My love to you all!  Nancy

Updates

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Hello!  I am so sorry I have been too busy to post.  I have finally finished putting together my presentation and will be giving it to the Allegany-Limestone High School tomorrow morning, I could use lots of prayers! We spent Saturday at Darien Lake Theme Park.  Hannah's school band competed there and then we got to have fun riding the rides.  I was a chaperone and rode on all the rides with the kids, including the Viper, Mind Eraser, and Superman Ride of Steel.  All of the other moms were too chicken to come along on the rides.  When they asked me how I could stand it I reminded them that life is too short and we have to just enjoy every moment of it! Yesterday I had the pleasure of meeting with a representative of UNYTS (Upstate New York Transplant Services) and am looking forward to working with them to raise awareness of organ donation in this area. We will be heading to Akron, OH on Friday for a Feis (Irish Dance Competition) there on Sat...

Great Opportunity for Siblings of children with CF!

Applications Now Available for CF Sibling Teen Advocacy Day, June 23-24, 2010 Brothers and sisters of those with cystic fibrosis know first hand how CF patients struggle daily with their disease and how important it is to quickly develop promising new treatments and therapies. That is why the Cystic Fibrosis Foundation invites all teenage siblings of CF patients to apply for participation in CF Sibling Teen Advocacy Day in Washington, D.C. on June 23-24, 2010. Because the risk of cross-infection precludes us from bringing a large contingent of teens with CF to Capital Hill, we ask their teenage siblings to come to our nation's capital and lobby on their behalf for policies that make a real difference to the 30,000 children and adults who struggle with CF every day. To take part in Teen Advocacy Day, participants must be between the ages of 12 and 18 and have a sibling who has cystic fibrosis, and must be accompanied by a parent. Space is limited, and applications will be con...

Life is and amazing ride...

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But you have to have the courage to get on and REALLY experience it!

Sad Day!

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Dear friends, Today has been a difficult day for us.  Our Guinea Pig, Oreo, has battled several urinary tract infections.  Over the weekend she became lethargic, stopped eating, and was having difficulty urinating, so this morning I took her into the vet.  They decided she needed X-rays, so I left her there.  Hannah had early dismissal at 1:00 and right after I picked her up Scott called to say that Oreo was not doing well.  Hannah and I went to the veterinarian where we found out that Oreo had not responded well to the anesthesia and had crashed.  They were able to resuscitate her, however, and things were looking better.  Hannah and I each held her and then left her for overnight observation.  A little while after we got home, I received a call that Oreo had passed away. This is the first pet Hannah has lost and, as you can imagine, it was very traumatic.  We brought Oreo home and buried her in a beautiful, quiet place in the back y...

Busy, Busy, Busy

Hello Dear Friends! I am sorry I have been slacking in keeping up my blog.  All I can say is that I am busy, which is terrific!  It seems so nice to have things to do and to be able to do them. I was asked to speak to the Allegany-Limestone Middle/High School at the end of the month, so I have been brainstorming ways to communicate with them about CF and transplant while at the same time keeping them interested and entertained.  I am hoping Scott will be able to come and record it, so that I can share this presentation with all of you.  Then you can let me know if I succeeded in my goals of educating AND entertaining! I can't remember if I shared, but I had applied to be a volunteer for the Upstate New York Transplant Services - UNYTS.  I have been accepted as a volunteer and will be meeting with one of their staff members at the end of the month to discuss what role I can play in their organization.  I am very excited about this! I have a...

Happy Mother's Day!

I wanted to wish all of you moms a very happy Mother's Day!  I didn't get a chance to do this yesterday, because I was too busy enjoying my own family.  What makes the perfect Mother's Day?  Is it the presents, the cards, the money spent?  If you are a mom, you know the answer is NO!  The perfect Mother's Day is about spending time with your family and that is just what I did yesterday.  We went out to lunch, we watched movies together, we played games, and just hung out.  It was WONDERFUL!  Thank you to my sweet Hannah and Scott for giving me the BEST Mother's Day! And to my mom, I love you so much!  Thank you for taking such good care of me all of these years!  God blessed me so greatly when He sent me into your arms and I will never be able to tell you enough how much I love you!

The Power of Two

For those of you who have been following my blog since the beginning, you may remember me talking about a wonderful book I had read about twin sisters with CF.  The Book was called The Power of Two: A Twin Triumph over Cystic Fibrosis and documented the life journey of these two sisters. I have recently learned that they are working on a film project and wanted to share the first trailer with you.  I am very excited for them and for the exposure they have given to Cystic Fibrosis and lung transplantation.  Thanks for your great work Ana and Isa! http://www.thepoweroftwomovie.com/home/

Sea Day and Miami Beach

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Sorry, I got a little behind. Our last day was at sea heading back to Miami. We attended a talent show that all three kids were supposed to perform in, but they all chickened out, actually, Simon fell asleep before his group was called up.  Hannah said goodbye to new friends.  Our waiters got a little goofy!  We got to dress up for dinner one last time!  We said goodbye to our fabulous waiters!  And we attended our last show. Scott, Hannah, and I stayed two extra days in Miami to give Scott a chance to relax before he had to go back to work.  We stayed at a lovely resort in Miami Beach (Priceline is awesome, we got an incredible deal!)  Though it was rainy, we enjoyed some down time after the excitement of the cruise.  The resort was called the Eden Roc and had 4 lovely outdoor pools and a private beach.  Drying Off in the Wind  Hannah's sand sculptures  Sunset from our hotel room!  What a wonderful family...