A Confession

I must confess that I've become quite lazy about posting. Have you noticed? I didn't think so. A few weeks ago, someone suggested I become a friend on FB, and I finally looked into it. Two or three years ago, someone had asked me. I went and signed up and never went back. It didn't make any sense to me.

Since I've taken the plunge, I've reunited with most of the missionary kids I taught in Haiti and a girlfriend from elementary and junior high school who moved away after eighth grade. I haven't seen her since then even though we have kept in touch at Christmas.

So that's where I've been spending more time.

The little boy who had the double lung transplant that I mentioned in the post below is doing well. For a few days he was not able to take anything by mouth because he hadn't passed gas. Everyone who visited his Caring Bridge page was praying for him to hurry up and pass it so that he could get on with eating. He told his mother that he was hungry for mashed potatoes and gravy from KFC. I'm sure that he has had just as much as he wanted.

His mom wrote that when he was in recovery and not yet awake yet, he had a smile on his face. The first words he said when he was extubated was "Hi, Mommy." He later told her he was glad that he didn't die. How do you read words like that without losing it?

One of the things he said that he could do now that he couldn't before was to hold his breath...something that we don't even think about.

Someone asked in a comment if a double lung transplant takes away the cystic fibrosis. The answer to that is "no." The new lungs do not have CF because they are from a donor. The recipient has to take anti-rejection medication after a transplant. But, unfortunately, that's only one part of CF.

While we are so happy that this little boy has new lungs, thoughts always go to the donor family. Someone died in order for him to receive this gift of life.

Also while we were rejoicing in his gift, a young woman in her twenties lost her battle with CF. Every time I read of one's passing, it breaks my heart. As one poster said in a comment after reading about this young woman's passing, "I hate CF." And that pretty much sums it up.

When you look at pictures of Ella, she doesn't look there could be a thing wrong with her, and we are so thankful for the health that she has enjoyed so far. We want it to stay that way! New drugs are in the pipeline that will help her and others to live a longer and healthier life. The Cystic Fibrosis Foundation is working to raise funds to help fund the research for these drugs. As one mom of a little girl with CF said, "I want my daughter to live to be 100."

For your reading and viewing pleasure

Here are a few photos of Ella, taken while she was here in Florida with "Gammy." I still have a smile on my face when I think about her visit. This week I've been reading a lot of blogs and have read some wonderful posts. Go here to read a heart-warming story that dates back to World War II and the Berlin airlift. You will smile and perhaps have a tear or two as you read this story.

Over at Kenju's place, today she posted a newspaper article about a long distance relationship that lasted for many years, spanning the ocean. Again, your heart will be warmed as you read the post. Click on the photo and you will be able to read it with ease.

Finally, since Ella's diagnosis with CF, I have read many blogs by CFer's. Many go through very hard times, but there is such a strength of spirit and love of life that keeps them going. This morning in my mailbox was this link. Lo had a double lung transplant a couple of years ago that went south. A year ago she had a second one, and in her journal this morning she writes of her journey. It is truly amazing to read of her journey and triumph through difficult times.

Please, please, read all three. You'll be glad you did.

Great Strides

On April 26, Sarah and I will be joining Team Gevity for the Great Strides walk on Siesta Key Beach in Sarasota. An annual event, these walks take place all over the United States, led by friends and family who are walking for a cure for Cystic Fibrosis.

When I was in Virginia, I went to a CF Education Day with my son at UVA. It is not a kind of meeting that one would want to go to, but the more one can educate himself, the more one can understand and equip himself to care for the cystic fibrosis patient.

One of the highlights of the conference was an address by a physician from the Cystic Fibrosis Foundation. He spoke of new drugs that in the pipeline that could be approved as early as 2010. If approved, these drugs will make GREAT STRIDES toward the improvement of the health of the CF patient. A recent article in Business Week speaks of the excitement about this drug and the role that the CFF has played in getting the research done for this drug. I encourage you to read it. It is so encouraging to all those with CF, but especially for parents with young children who will benefit most from these new developments.

I read a post this morning by a young woman who has CF. I cried as I read her post. I think that she has expressed so well the feelings of many young people who have this life-shortening disease. Please read her post and leave a comment.

Many of you dear friends read my first post about Great Strides and so quickly made a donation, and I thank you all. I'm linking to my page again in case anyone new reads this post and would want to make a contribution.