August 31, 2009

Two weeks into preschool, and Grace is loving it. Three weeks into the valproic acid, and so far no side effects that we've noticed. She'll get her blood drawn next week and we'll know more then.

Grace had a pretty busy weekend. We had some friends and their kids over Friday night, then Saturday she got her hair cut and went to a football tailgate. We laid pretty low yesterday (Sunday), which Grace and I plenty of time to play school. That's one of her favorite things to do. Yesterday I got to be the teacher and she was the student--often times it's the other way around.

August 22, 2009

So far so good two weeks in to Grace's VPA experiment. We haven't seen any side effects, and she's taking the medicine with her food just fine. This next week we up her dose half of the full dose.

This morning Grace is planning a play. Right now she's huge into thinking up plays and then acting them out. Pretty soon we have a dress rehearsal coming up, because as Grace just told me, "you need to practice if you're gonna have a good play." She's also huge into dress up right now, and thankfully she has enough princess dresses that we can accommodate her demands.

August 17, 2009

Grace starts her second year of preschool today! She's eating her breakfast as we speak and can hardly contain her excitement. We're grateful that's she's such a social kid--she's not one bit scared or shy about going back. She'll be in the same classroom as last year with the same teachers and aide, so that's a comfort to us. What a difference a year makes, because we were really apprehensive last year with her starting her first year.

She's been on valproic acid for a week now, and nothing to report. We're only giving her a quarter dose right now, and next week we'll up it to a half dose. She takes it with yogurt, and so far it hasn't been a problem to get her to eat the yogurt. We just open up the capsules and poor the sprinkles in the food.

August 9, 2009

Today we're starting Grace on valproic acid and carnitine, and we're looking forward to seeing what happens. Best case scenario, Grace feels a little stronger or at least stops regressing. Worse case scenario, she has some side effects and we stop the treatments. We'll monitor Grace closely and see what happens.

We spent a couple days this past weekend in Okoboji and spent much of our time doing what Grace loves most--swimming. We also took her on a boat ride around the lake, and she loved that as well. Pretty much anything on the water--she's gonna love it.

We'll try to get some Race 4 Grace updates and pictures on the website soon.

July 23, 2009

Big week. The Race 4 Grace RAGBRAI team had a blast this past week. We camped in Council Bluffs on Saturday, rode to Red Oak on Sunday, rode to Greenfield on Monday, and the last of us headed hom on Tuesday morning. We survived two bike breakdowns, a flat tire on a support vehicle, and rain on Monday. We fielded many, many questions about SMA and Race 4 Grace over the course of the few days, and that will continue to be one of the ways we try to raise awareness. We're continuing to accept donations to this year's Race 4 Grace effort, and the support so far has been awesome.

We are also moving into our new home in Sioux City. It's been a hectic summer, and it'll be nice to finally get settled in. Being in a ranch home will be a HUGE plus for Grace and her equipment, and we're happy we made the decision to move this summer.

July 16, 2009

We'd made a decision to try something for Grace. Those of you who have SMA children know about valproic acid and carnitine, but those of you don't probably don't. Valproic acid and carnitine are currently being used in clinical trials to determine their efficacy in strengthening individuals with SMA. At this point there isn't clinical proof to show that they work, but there is some anecdotal evidence from families who've tried it with their child. We've seen a regression in Grace's ability to stand for a set amount of time over the last few months, so we decided to try valproic acid and carnitine. We really made the decision after the FSMA Conference in Cincinnati after talking to families and researchers about it. There are potential side effects, and we've decided that we're going to try it until we see any adverse effect, at which point we'd stop right away. Grace will be getting a prescription from her doctor in Iowa City, and we hope to start in the next few weeks. We'll keep you posted.

July 10, 2009

Friday morning, just eight days away from the start of RAGBRAI and Race 4 Grace 2009. We sent out flyers a couple weeks ago, and we've already received a large number of responses and generous donations to the charity. If you're reading this and somehow didn't get a flyer, check out the home page of the website or email Michelle or me.

The plan for the team this year is to meet up in Council Bluffs/Omaha on Saturday the 18th. We are riding the first two days, which go from Council Bluffs to Red Oak and Red Oak to Greenfield. I'm excited that we have some riders who haven't been on RAGBRAI before, and as always it'll be a great time. We also got hot pink Race 4 Grace shirts this year, so we'll be sure to stand out on the journey.

Grace's summer continues to be busy. We added a second session of physical therapy just for the rest of the summer. We went to a big pool last Sunday that let little kids ride with their parents on their big water slide. Since Grace is an adrenaline junky, she loved it--we went down that slide more times than I can count. Grace also went to Saturday in the Park with us last Saturday. Saturday in the Park is a huge outdoor music festival held every year in Sioux City, and this year the Counting Crows were the headline band. We were very proud of Grace as she navigated her Dani through the 25,000 people without any problems. And she somehow managed to stay awake long enough for the fireworks at 10:30. Probably a new record for her.