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.
Thursday, July 23, 2009
Thursday, July 16, 2009
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.
Friday, July 10, 2009
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.
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.
Saturday, July 4, 2009
July 4, 2009
Happy 4th of July to everybody. We're going to go to a parade in downtown LeMars this morning, then head to Saturday in the Park in Sioux City later today. Saturday in a Park is a big, outdoor annual music festival in Sioux City, and this year the headline band is the Counting Crows. They have some things for kids to do, so hopefully Grace will have fun. Then we'll finish the night by watching fireworks (hopefully Grace will still be up).
In the last post I mentioned that we were thinking about doing some things differently with Grace in terms of nutrition. Clinical trials are currently underway with SMA kids involving valproic acid and carnitine, and we're thinking about having Grace take these. The trials aren't finished yet, so there is no proof that they work or help strengthen kids with SMA, and there definitely are some potential side effects to the valproic acid. However, we talked to a number of families at the national FSMA conference a few weeks ago who had their child on it and reported pretty positive results. The main thing is we don't want to sit idly by when maybe there is something that can help Grace. We're still debating it, and it'll be a process of probably having to go to Iowa City to get her started. We'll see.
In the last post I mentioned that we were thinking about doing some things differently with Grace in terms of nutrition. Clinical trials are currently underway with SMA kids involving valproic acid and carnitine, and we're thinking about having Grace take these. The trials aren't finished yet, so there is no proof that they work or help strengthen kids with SMA, and there definitely are some potential side effects to the valproic acid. However, we talked to a number of families at the national FSMA conference a few weeks ago who had their child on it and reported pretty positive results. The main thing is we don't want to sit idly by when maybe there is something that can help Grace. We're still debating it, and it'll be a process of probably having to go to Iowa City to get her started. We'll see.
Friday, June 26, 2009
June 26, 2009
The past few weeks have been a whirlwind, which is going to be my excuse for not posting for awhile. In chronoligical order, our first big event was moving out of our house. We were sad to sell it and move out, but it was becoming more apparent as Grace gets bigger and as she uses her power wheelchair and Standing Dani more that we needed to move into a regular ranch-style home. The only negative of the whole deal is that we can't move into our new house until late July, so for now we're stuck in limbo living with my parents in LeMars. It hasn't actually been too bad, and for Grace it's been like an extended five weeks vacation at Grandpa and Grandma's.
Last week we spent four days in Cincinnati at the FSMA national conference, and for so many reasons it was a tremendous trip. Grace got to see and play with a lot of kids like her in wheelchairs--which she never gets to see at her school. We think that's a great benefit for her. For us it was great to network with families, go to the workshops, meet new people, and learn a lot more about some of the things we can do for Grace. It's always tough to think about what the future might hold for Grace, but we usually fight off our periodic bouts of worry and sadness with optimism for what the future holds.
We're thinking about a number of things we might start doing for Grace in terms of nutrition, medicine, equipment, therapy, and I think I'll touch on those in the next few weeks.
Finally, RAGBRAI and our annual Race 4 Grace fundraiser is less than a month away. We've already started mailing and emailing the donation form for this year, and if you want one, you can download it on the home page of the website. Basically you have two ways to participate in Race 4 Grace--ride with our team in RAGBRAI or send in a donation--we appreciate any kind of participation! More to come.
Last week we spent four days in Cincinnati at the FSMA national conference, and for so many reasons it was a tremendous trip. Grace got to see and play with a lot of kids like her in wheelchairs--which she never gets to see at her school. We think that's a great benefit for her. For us it was great to network with families, go to the workshops, meet new people, and learn a lot more about some of the things we can do for Grace. It's always tough to think about what the future might hold for Grace, but we usually fight off our periodic bouts of worry and sadness with optimism for what the future holds.
We're thinking about a number of things we might start doing for Grace in terms of nutrition, medicine, equipment, therapy, and I think I'll touch on those in the next few weeks.
Finally, RAGBRAI and our annual Race 4 Grace fundraiser is less than a month away. We've already started mailing and emailing the donation form for this year, and if you want one, you can download it on the home page of the website. Basically you have two ways to participate in Race 4 Grace--ride with our team in RAGBRAI or send in a donation--we appreciate any kind of participation! More to come.
Friday, June 5, 2009
June 5, 2009
Busy times at our house. We're packing and getting ready to move next week--the result of selling our home a lot quicker than we anticipated. Grace seems to have accummulated an unbelievable amount of dolls of all types, and her mom has avoided packing her room to this point.
We're doing some preliminary work for the Race 4 Grace 2009 campaign. We're going to put together a sheet to email and handout as a way of collecting donations. Everything we raise this year we're going to give to the Iowa chapter of FSMA. Our plan this year is to send a Race 4 Grace T-shirt to anyone who donates $25 or more. Anyone who's seen the T-shirts knows they're pretyt sweet. We're also in midst of recruiting riders for the RAGBRAI portion of Race 4 Grace--I'm excited that we have some newbies this year.
We're doing some preliminary work for the Race 4 Grace 2009 campaign. We're going to put together a sheet to email and handout as a way of collecting donations. Everything we raise this year we're going to give to the Iowa chapter of FSMA. Our plan this year is to send a Race 4 Grace T-shirt to anyone who donates $25 or more. Anyone who's seen the T-shirts knows they're pretyt sweet. We're also in midst of recruiting riders for the RAGBRAI portion of Race 4 Grace--I'm excited that we have some newbies this year.
Wednesday, May 27, 2009
May 27, 2009
Our prayers were answered yesterday. We received news that the test results on our new baby were what we'd hoped--our baby will be SMA free. We are so happy and thankful, and we appreciate everybody's thoughts and prayers over the past month. It was a long four weeks of waiting, but that's over now!
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