Archive for July, 2009

Virginia Blue did great yesterday!

Ok at clinic in the morning her oxygen was 99 and her lungs sounded clear. She is now 28 inches (she was 19 1/2 at birth) and weighed 15lbs (from 8lbs 5oz at birth). Her growth was great, but weight gain not as good as it has been in the past visits. She is now in the 50th percentile from the 75th. We don’t want her to get below the 50th. We are trying a new enzyme and adding rice cereal and veggies to the diet. Our next visit we will also see the gastroenterologist with the dietitian to talk about her spitting up and poops. But, they said she is doing great!

Next we went to the pediatrician and they did a full physical and then it was time for the dreaded shots. As we waited for the nurse I felt more and more stressed out. She of course was wide awake happy and smiling. The nurse finally came in.  We laid her on the table. She gave her the first shot. She SMILED! Then the second shot at first no reaction then the bottom lip came out and started to quiver. She let out a cry and I picked her right up. She stopped immediately.  She was so good the whole way home and then we took a warm bath and relaxed. She has been acting totally normal and happy. I’m so relieved. Hallelujah, it’s over… til 6 months… Ugh!

Brave girl shows off her first band-aid!

Bami and I gave baby Virginia a photo shoot today here are a few pictures! Oh and tomorrow is CF clinic at 9am and then at 2pm is her 4 month wellness visit with her pediatrician. She has to get shots and I’ve had anxiety all day about it. I think clinic will be fine, but shots are terrible. She felt yucky for 3 days last time. I’m dreading it. I’m praying she’ll be asleep and not even wake up. It could happen… Ooohhh.. pray for her to do well.

July 28, 2009

At a recent meeting of volunteer leaders in New York, Milestones campaign chair, Joe O’Donnell, announced that two families, who have devoted more than three decades to fighting CF, have made $6 million available for major gift matches through the end of 2009.

Major gift donations of $10,000 or more will be matched dollar-for-dollar through December 31, 2009. Multi-year pledges at the Milestones Club levels ($50,000 or $100,000) or higher will be matched in their entirety.

The two families who established the challenge match have long been dedicated to supporting CF drug development, which they believe is the key to ensuring that all those with CF live long and healthy lives. By issuing this challenge, they hope to compel others to support the CF Foundation’s robust research program.

Today, thanks to the CF Foundation and its generous donors, there are more than 30 drugs in the Foundation’s drug development pipeline. And, for the first time, patients are taking drugs in clinical trials that address the basic genetic defect in CF, not just its symptoms.

The Milestones to a Cure campaign is dedicated to building support for the development of new treatments and is approaching the final phase of its $175 million goal. “We are deeply grateful for the generosity of these two extraordinary Milestones families,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “Every gift is important to us, but thanks to these very generous friends, gifts given now will have an even greater impact.”

Help us advance the search for a cure and give now. This is too good an opportunity to miss!

To double your donation today, please contact John Lehr, vice president of major and planned giving at (301) 907-2594 or jlehr@cff.org.

Virginia Blue started reaching for who she wants to hold her the past couple of days. Talk about melt your heart! When she looks at you with those big blue eyes and the reaches out to you…  Oh I’m so in love. She also started to do spiting noises and even did it on my neck a couple days ago. She’s got a little sense of humor. I know I smile and laugh all day. She’s amazing.

Ok so these are not new pictures, but I came across this one of Derek and Virginia at the Huntington Library and the story is cute. When Derek was a little boy his mom would take him to Huntington Library and she took a picture of him in front of this bridge on one knee in a blue button up shirt. (I need to find this picture) Ten years ago Derek brought me there on a date and we took a picture of him in the same place in a blue button up shirt.  Now when we went there for her first trip we had to get a picture of her and dad in the Chinese garden by his bridge.  (Blue button up and all) It has become a tradition of sorts.

1999

2002

2009

I had a women come up and start talking to Virginia from over the counter yesterday. She was being very sweet and then she came over and asked me if she could hold her.  I was very surprised a stranger would ask to hold her. I told her  that I was very sorry, but no. She instantly looked hurt by my answer. I quickly explained that we just don’t let many people hold her because she has a disease called CF that affects her lungs and digestive tract. I told her that we can not let her get sick because it will damage her lungs and shorten her precious life. She told me “She looks healthy to me and that she would out grow it.” I smiled and said that would be nice and walked away. I’m shocked that people that don’t know the severity of a disease would tell me that load of crap. I don’t think people can understand (unless they have a family member with CF) how the common flu that most would kick in a week would damage my babies lungs permanently.  Her life is so important. I feel so upset when people want to tell me a thing or two about something they know nothing about. While I’m telling my pet peeves let me add, can’t people cover their mouths when they cough or sneeze? And is it really that big of a deal to wash your hands?! Is my babies life not worth the minute to properly wash your hands? Ugh! I don’t want to hurt peoples feelings but…

Ok! I’m done now. Ha!

Tipping the scale at 15 lbs!

We can’t seem to eat our prunes without a very large and extremly sticky mess. Well, bath time is now moved to before bed. We don’t want our little Virginia stuck to the sheet! She’s too much fun!

Derek’s beloved grandma passed away today. I can’t even believe it. I think we are in shock. What sadness has touched our hearts. Derek had a special bond with her and is especially heartbroken. I’ve never seen him hurt like he is. They would talk food, old memories, the latest on the neighborhood and weather. She filled his heart and was so good to him.

Beverly was an unbelievably wonderful wife, mother, grandmother and great grandma. She was the glue of a family. She is strong, fun, beautiful, and an unbelievably good chef. (I think that is where Derek got his love for it) She had an eye for antiques and her house was the epitome of a home. We strive to copy her even the  tiniest bit on our own house. She is such a special person to a very special family. It was such an honor to know and love her. There are no words for this sadness. She will be missed very much every single day.

This is Derek on the porch talking to his Grandparents on the 4th of July. There is that extraordinary kind of love you have for a wonderful grandparent in his eyes. He lights up around them both.