Monthly Archives: September 2010


Here’s the final tally for this week’s Spaghetti Night with Callie: 240 attendees with almost $1500 raised for SMA research. That’s triple our original goal! Thanks to everyone who made this possible.

And remember if you need cosmetics, please contact Mary Kay’s Ruth Edwards, who is donating 20 percent of September profits to SMA research. Learn more.

Spaghetti Success!

Our spaghetti fundraiser tonight was fantastic! Over 200 people attended. We can’t wait to get the final numbers to report.

This was all possible because of our church, First United Methodist in High Point. The church provided the meal so all proceeds from the dinner could go to research. And several church members volunteered in the nursery so parents could attend the program after the meal.

Angela Guy, Callie’s preschool teacher, was the organizer in chief. She made sure the dining room was beautiful — decorated with table cloths, centerpieces about SMA, balloons and pictures of Callie. She also made sure everything went off without a hitch, which it did.

Kim Myers and her team cooked spaghetti all afternoon and made sure the meal was delicious and pleasant for everyone. Countless people set up the dining hall, dished out salad and dessert, served spaghetti, made sure people had ice in their cups and cleaned up after the entire event.

And a special thanks to Dr. Anderson, Callie’s pediatrician, who volunteered his time and expertise to educate us all about SMA.

We’re honored so many people made time to support this cause. Because of them, we’re closer to a cure than we were yesterday.

For Sandy

The day Callie was diagnosed with SMA, I considered dropping out of the cake decorating classes my friend Sandy and I had signed up for. But I decided that it might be a good outlet. So Sandy made my icing, in addition to her own, for all of our classes. That’s not as easy as it may sound. She also made sure I had tissues when I started crying during class while making flowers.

That’s the kind of friend Sandy is.

Tomorrow she and her family will be leaving to live overseas for the next 4 months.

She’ll be leaving behind an unfinished remodeling job in her bathroom. That’s because on the special weekend set aside for the project (while her children were visiting their aunt) our son Peter decided he would be born. She gladly took our older 2 boys in the middle of the night as we were on our way to the hospital. That was almost 3 years ago, and to this day, the cabinets are missing their doors and part of the baseboard is simply missing. But she doesn’t mind so much.

We joke that when we’re old, we’ll spend our days together, doing what we do now–endless mounds of laundry, talking, philosophizing and of course, eating.

I hope she hurries home.

September fundraisers

We’re pleased to announce 2 exciting fundraisers for this month. A wonderful friend, Ruth Edwards, will be donating a  portion of all her Mary Kay sales to support  SMA research and Callie’s fund at our church. You can order via e-mail, internet or traditional catalog. Click here for more details.

Also, on Wednesday the 22nd, our church is hosting an event, Spaghetti Night with Callie. It will be a lovely spaghetti dinner, with a speaking  session after the meal. Callie’s pediatrician, Dr. Anderson, will share some facts about SMA and the challenges these children face. I will also be sharing our personal story about Callie. Here are some more details.

We are grateful for the love, support and time that so many people are dedicating to make these fundraisers possible.

A long day at Duke

Today Nathan, Callie and I spent the entire day at Duke. We met her neurologist, Dr. Edward Smith, for the first time. He was very kind and knowledgeable. However, I left his office feeling disappointed. I think I secretly wanted him to walk in and say, “You haven’t heard about this yet, but we’ve had a huge breakthrough and we think we can treat little Callie and see great results.” We’ll return to his office in six months for a check-up.

We then saw her pulmonologist, Dr. Richard Kravitz, who could be considered her primary specialist. Lung function is critical for children who have SMA because the chest muscles that help them breathe are weakened. Dr. Kravitz helps coordinate a lot of Callie’s care. She had lung tests that were fine and we’re working on some allergy problems she’s been having that have contributed to her increased congestion.

Callie also had an EKG (a tracing of the electricity in the heart) and an echocardiogram (an ultrasound of the heart). We got these tests because SMA impacts the autonomic nervous system, so we wanted to have a baseline test. Her EKG was normal and we haven’t heard officially about the echo, but we expect it to be normal as well.

We were also very pleased to learn that the nutritionist at Duke thinks that Callie is doing very well with her current diet. She gave me some good ideas about certain things to add to her diet, such as Pediasure. Callie has gained an appropriate amount of weight for a child with SMA since her visit to Duke in June, so we will definitely not be getting a feeding tube right now.

We saw the orthopedist on Wednesday and he said exactly what we expected him to–that it was nice to meet us and he would keep an eye on her spine. Scoliosis is inevitable but he doesn’t think we need a brace right now.

Thanks to Sandy, who took care of our 3 boys, in addition to her own 4 children.

We have 2 exciting fundraisers in the works right now and will post details about them on the site by Monday.