A Hero of Hope

Soon after Ella was diagnosed with CF, I began reading anything I could find about this disease that takes one's breath away. I found several blogs, but one, in particular that I began reading. I'm not exactly sure how I came across Lauren's blog, but she has been a friend in the journey that we as a family have begun.

Unlike Ella, Lauren was diagnosed at birth because she had a condition called meconium ileus, a condition that is present in about 20% of newborns with CF. (I think that figure is correct.) There is a website called Heroes of Hope, which features a new person each month and how they live with CF. This month's hero is my friend, Lauren. Please go here to read about this wonderful young woman.

Great Strides

Our Great Strides Walk for a cure for Cystic Fibrosis is March 14 this year at Siesta Key Beach in Sarasota, Florida. The Great Strides Walk is one of the major fundraisers of the Cystic Fibrosis Foundation. Sarah and I will be walking along with some of her co-workers at her place of employment. I hope that you will consider contributing to this cause again this year. Many of you who read this blog gave generously, and I would hope that perhaps you could do so again.

Ella was diagnosed through newborn screening in August 2006. Every day morning and evening her parents do chest percussions to help keep her airway cleared. Before any snack or meal she must take enzymes to help her food to digest and nutrients be absorbed in her body. She has regular visits to the pulmonologist for checkups; cultures are done regularly to make sure she is clear of any bad bugs.

To look at her, one always says, "She looks so healthy." So far, she is, considering she has cystic fibrosis. No matter how hard her parents and the medical team work to keep her healthy, sometimes it just doesn't happen that way.

I posted about a young boy who had a double lung transplant recently. He is home with his family now. His mother wrote today in a post that she just loves watching him breathe. She loves watching him eat. She loves watching him smile again. Because he is so young, they wondered if it was the right thing to do, but they know now that it was.

I attended a CF Education evening last Friday night at All Children's Hospital in St. Petersburg. We were informed of the drugs that are in the pipeline that are going to make a real difference in the lives of CF patients. Drug development and drug trials are financed in a large part by the CF Foundation. Eighty-nine per cent of money given goes for research.

If you would like to donate, go here. Ella's parents, Sarah, and I will thank you from the bottom of our hearts.

A glimpse of my week in Virginia

Jump, jump, jump. One day before I could turn around, Ella had turned her block tub over, climbed up and was jumping down. Boy, can she ever do squats, has good balance, and is not afraid of much. Recently I've started going to the gym working with a trainer, and what are we doing? Squats...working on balance...and all those things that one is able to do when younger.

Can you say chocolate? Ella is a lover of chocolate like most of us. She had been to the grocery store with her mom and had part of a doughnut as a treat the next day after she had eaten her lunch.

Ella loves the playground. We were playing...Ella went up the ladder to go down the slide and then said, "Grammy, come on up." I said that I couldn't, and then she looked at me and said, "Are you too old?" Well....

And then there is the ballerina Ella...more of these photos another day.

I flew home today from Virginia, leaving a part of my heart there. But never fear, I'll be going back soon in a few weeks!

Looking Up - Carmi's theme

3 When I consider your heavens,
the work of your fingers,
the moon and the stars,
which you have set in place,

4 what is man that you are mindful of him,
the son of man that you care for him?

These words speak so clearly of how small we are and how great our God is. Even though we are so unworthy, He has chosen to love us. For that I am very thankful.

Here's My Heart

Here's my valentine. I didn't have the fun (?) of making these cookies with Ella, but I thought they were perfect for Valentine's Day. Ella loves to help! My daughter-in-law and I were talking the other day, and she mentioned how Ella loves to help. She is quick to pull a chair up to the counter in the kitchen to help her mommy or daddy. Because they both work, I know how hard it is to take that extra time to let them "help." I don't remember when I was little helping my mother. Because she, too, was a working mother, she often just wanted to get into the kitchen and get it done. I never did really learn a lot about cooking from my mother, so I'm glad to see that they take the time to include her in the "fun" in the kitchen.

I'm up in Virginia spending a week with Ella now. We've had a grand time these last two days. Tonight as I was saying good night to her, she said, "I love you, Grammy." That's all I need or want. Have a happy valentine's day tomorrow with your loved one.

Up - Carmi's photographic theme

High up near the top of the Washington palm, I often see this pileated woodpecker. This tree is in the back yard of the house next door to me and from time to time when I go out in the mornings and look near the top of the tree, one or more of these woodpeckers can be seen there. A couple of years ago when I looked up, there were four babies on the trunk of the tree. That was especially exciting.

Carmi has the theme "up" this week over at his blog. Go visit and see his photos of "up."

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."

Just a note

The little boy who had the double lung transplant earlier this week is doing well. If you would like to read about his experience and progress, go here.

A friend sent this to me in an e-mail, and it was too good not to share.

We've had lots of rain today, which is a good thing. I'm glad that it didn't rain last night for the big game. Now we're to have some freezing weather again. I know all the northerners laugh at us in Florida when the temperature drops to freezing or near there. I happen to like it, knowing that in three months or so, the heat will be with us once again.

There is a little boy in the UNC hospital today undergoing surgery right now (8 p.m. Feb. 2) receiving new lungs. He is only seven, with cystic fibrosis. Please remember him and his family in your prayers. And as always, please pray for the scientists who are searching for a cure to this disease that literally takes your breath away.