RAGBRAI

I'm writing this on Monday morning, the day after the Race 4 Grace team did RAGBRAI for the second year. It was another great time. Many of the team members camped in Missouri Valley on Saturday night, while the rest came to town early Sunday morning. We left Missouri Valley about 8:30 am, and it was on. The toughest stretch of the day may have been the first ten miles, which was a hilly stretch leading into the first stop (a tiny town called Beebetown). At that point we wondered if we'd make it the rest of the day. But the team was tough, sucked it up, and cruised into Harlan between 3:30 and 5:00. I think we'll end up having a good number of people who sponsored the riders this year, meaning we'll be able to give a good amount of money to FSMA. We had a huge banner on our support vehicle this year, but our goal for next year is to look into acquiring some sort of bus for the journey. And, there are some team members thinking about doing the whole week next year, including Grace's Grandpa. More on the day and ride later in the week...

Iowa City Trip

We've been gone quite a bit the last few weeks, trying to enjoy the quickly moving summer. We had a good Fourth of July weekend, and Grace got to spend plenty of time on her Grandpa's boat. She even went tubing, and loved it except for the one time her Grandpa got going a little too fast. This last week we went to Iowa City, and it was a productive trip. Going to the UI Hospitals is always a little bit crazy, because you meed with about 100 people in one trip. This time we spent quite a bit of time with a Pulmonologist, because we're looking into getting a machine called a Cough Assist. It's basically something that helps with breathing, especially if Grace would get really sick. She doesn't need it now, but we want to get it to get her comfortable with it and be ready to use it if necessary. We also met with a nutritionist, who affirmed that we're going things well as far as Grace's nutrition level. She's still very small, but she's been that way since she was born. She's actually getting taller, having moved up to the 10th percentile for height (she's still in the bottom 3 percent for weight, which she's always been). We also spent some time with a physical therapist talking about power wheelchairs.

RAGBRAI getting closer

Our summer is going fast, as I'm sure all of your summers are. Grace and Michelle went golfing with me tonight, which was fun. We've been doing that a little lately--Grace really likes the golf cart and cheering the rare put her dad makes. She goes in tomorrow morning to get her new "magic shoes", which will be quite a bit bigger than her current pair. For those of you wondering what magic shoes are, they are the braces she wears on her feet and ankles for support and to keep her feet from rolling inward when she stands. We took to calling them magic shoes when she first got them last summer to make them sound more exciting than braces. Her new pair will go past her knees and almost halfway up her thighs. I doubt she'll like them, and they probably won't be comfortable, but they'll provide more support and keep her knees from bowing in--which they've started to do quite a bit. The good news is that she's still standing a lot and much prefers to do so than sit. We also went for a bike ride today as a family, and it made our thoughts turn to RAGBRAI, which is less than a month away. As it gets closer, it's looking like Michelle and I are going to ride the first day. I know we've said this, but just to make sure, all money that the RACE4GRACE team raises from here on out will go to FSMA and it's search for a cure and treatment for SMA. While we greatly appreciated everything last year and put it to very good use, we no longer are accepting any money that's raised--it's all going to FSMA.

Summer Is Here

Summer is here for Grace and her mom! Grace is still going to go to Kathy's one day a week this summer, mainly because she likes playing with the kids so much. Otherwise Grace and Michelle have a pretty full summer planned. They went to the library yesterday, and they're signed up for some kids activities at the Sioux City Public Museum. Grace also got to go to her "swimming lessons" yesterday for the first time in a few weeks--she'd been under the weather so much we've been cancelling her swimming appointments. Also, we just got a power lift installed in our mini-van--this will be great for hauling her Dani around. Finally, Grace beat both her mom and dad in her first ever game of Candyland last night.

Interesting Weekend

Well, we had an interesting Memorial Day weekend. Grace came down with a wicked case of the stomach flu last Tuesday night, and she threw up everything for a couple days. Finally on Friday we brought her back into the doctor, and they recommended that she be hospitalized to get an IV going to replenish her. So, we spent Friday night and Saturday night in St. Luke's in Sioux City. It was exactly the right thing to do, because she had gotten really weak from not being able to keep any food or liquids down. She was already feeling better by Saturday, but they kept her in Saturday night just to be sure. We came home Sunday, and Grace hasn't looked back since. She's back to her regular diet and regular energy level and ready for some summer action.

Birthday

Today is Grace's 3rd birthday. Thanks to all who've wished her a happy birthday. She'll celebrate with all her friends at Kathy's house today, and she has her weekly music class tonight. Then tonight her mom and dad will finally get to celebrate with her. We feel so blessed to have Grace in our lives, and we're so appreciative of everybody's thoughts and prayers.

Posts

Not much is new with us. We have a meeting next week with various people about our plans for Grace for next school year. As scary as it sounds, we're thinking about sending her to preschool. She'd be able to get some really good services, and we think we've found a great teacher for her. We'll see what happens with all that.

Also, we've recently heard from a couple different families from around the country who've seen the website and contacted us about their experiences in having a child with SMA. I guess this means we should do a better job of updated the site and blog on a somewhat more regular basis.

We are really hoping that some of you will ride a day in RAGBRAI this summer!