Race -4- Grace | Help Fight SMA | Iowa RAGBRAI & SMA Event Team

October 16, 2011

2011-10-16T11:45:00.000-07:00

Things are rolling along in the Nelson house. Grace is loving first grade. She's reading third grade-level books and really likes reading. She really likes her teacher and classmates. We had parent teacher conferences last week, and Mrs. Church (her teacher) had many wondreful things to say about Grace. She loves learning and is pretty independend and unafraid to speak up for herself. We were pretty proud of our little girl after the conference.

Grace is going to be Rapunzel for Halloween--her Grandma Colleen is hand-making her a dress. She's been on that kick ever since we went to see Tangled in the theater last winter. And she already has plans for next Halloween--she's going to be Luigi from Super Mario Brothers. Grace has recently gotten in to playing Super Mario World on our Wii--and it's amazing how much better at it she's gotten. The game fits her imagination well.

September 18, 2011

2011-09-18T05:44:00.000-07:00

We had the Beaverdash in Des Moines yesterday. The Beaverdash is a 5K run and 1 mile walk that is the main fundraiser for the Iowa chapter of Families of Spinal Muscular Atrophy. Always good to see the other Iowa SMA families, and most all of them were there. We hadn't seen most of them since last September. Grace enjoys being around other kids in wheelchairs--because she doesn't get that experience too often. Grace took 2nd in the wheelchair race--I guess I'll have to look at getting her a better motor!

Otherwise things are busy with the start of the new school year. In addition to her school schedule, Grace has swimming on Tuesdays after school, religious education on Wednesday nights, and Girls Scouts every other Thursday night. She loves all three, but hopefully they don't drive her mom crazy getting to her to all her activities.

August 30, 2011

2011-08-30T19:24:00.000-07:00

First grade continues to go very well for Grace. We're extremely happy with her teacher, and it seems like she has a good bunch of classmates. There are already a number of girls who she wants to have over for play dates. She wakes up every morning excited to go. Tomorrow night she starts her weekly religious education class. Those go for an hour and fifteen minutes every Wednesday night during the school year. We changed churches when we moved this summer, but we assume she'll like it as much as she did last year.

Our next project in the house will be to re-model one of the mainfloor bathrooms for Grace. We'll get a walk in shower that we can wheel a shower chair right into, and we'll get a sink with nothing underneath so she can wheel her chair right up to that. A handicap bathroom will be a nice improvement, hopefully in the same way that the wheelchair ramps have been!

August 20, 2011

2011-08-20T06:50:00.000-07:00

Two days of first grade underway, and things are going great for Grace. She is back at Leeds Elementary, which is where she attended preschool. She had no problems changing schools--probably helps that she was already familiar with the school. She was so excited for school on Wednesday night that she couldn't sleep.

Her teacher's name is Mrs. Church, and we're really going to like her. Grace even told her that she loved her yesterday. Pretty funny. Grace has the same aide this year, and that really helps as far as knowing what Grace's needs are. We can't say enough about the kind of job that the school district has done accommodating Grace's needs.

Grace is a new promotional video for Camp High Hopes. Here is the link: http://camphighhopes.com/. It's the third video down on the right side of the page, and Grace is the third person to speak in the video. She talks 3-4 times during the video. Pretty cute.

July 29, 2011

2011-07-29T20:15:00.000-07:00

Wow it's been way too long since we've posted, and a lot has happened. We'll go in reverse chronological order.

The 5th annual Race 4 Grace has been a big success, and we continue to take in donations. The RAGBRAI team did the Monday stretch, which ran from Atlantic to Carroll. It was a fairly tough day with quite a few hills and a lot of sun. The uphill climb into the small town of Willey almost killed me, but I'm still here to write about it. As always it was an absolutely great time, and we'll work hard to recruit even more riders for next year. Most people don't realize what RAGBRAI is until they experience it once, but once you do experience it it's hard not to want to do it again.

Our family has spent a decent amount of time this summer at Okoboji, taking advantage of my parents' home and boat. The girls love the water, none more than Grace. The last time we were there she swam the entire length of the pool, even though it took her forever. Her determination is absolutey incredible sometimes. Both Claire and Grace love to tube, as long as Daddy holds on to them tightly!

We moved to a new home at the end of June, and so far that's been absolutely great. It's a wonderful neighborhood, a perfect yard, and a nice house. Last weekend my brother Luke built us a ramp in the garage and a ramp off the deck in the backyard, so Grace can get anywhere anytime. It's been amazing how much of a difference this has made even in just a week's time. Our next project in the house will be to remodel one of the bathrooms to install a handicap accessible shower and sink for Grace. This could be a pretty lengthy process, but it'll definitely be worth it for her in the long run!

RAGBRAI Overnight Stay in Atlantic & Into Carroll

2011-07-20T06:05:00.000-07:00

The Roecker's are excited to see you all on Sunday, July 24.

From our host: "Our address is 1704 Redwood Dr. Atlantic and we live on the southeast side of Atlantic and east of the high school which is a popular spot for Ragbari campers. If you find the high school, you are close! Todd will be riding from Glenwood that day with our daughter, Kelly and her husband Shawn along with his 2 brother's and family. I will be their support vehicle, please come on into the A/C and help yourself with anything. There will be some cold beverages of your choice. Please make yourself at home. I will arrive as fast as I can. Have fun in the meantime.

If you have any questions or need certain accommodations please give us a call at home 712-243-3043 or my cell is 712-249-7700. Hope this heat lifts for all you riders. Looking forward to seeing everyone."

VERY BIG THANK YOU TO THE ROECKERS FOR HOSTING OUR TEAM!

June 19, 2011

2011-06-19T13:51:00.000-07:00

Father's Day, and as I'm writing this I'm reflecting on my two beautiful daughters. Claire continues to bring a tremendous element of joy and energy to our house--she truly brightens everybody. Grace continues to be a sweetheart with an unstoppable imagination. She's seemingly involved in non-stop play that involves her imagination.

Grace has Challenger Little League tonight, I think she only has three weeks of that season left. Time flies.

We close on our new house this Friday, and we'll be making the big move a week from Tuesday. We're really looking forward to settling in the house and making some renovations to further accommodate Grace. The plan is to build a ramp in the garage and another ramp off the deck in the backyard. The first major thing we'll do in the house will be to renovate a bathroom to make it fully handicap accessible.

Last but certainly not least, RAGBRAI and the 4th annual Race 4 Grace are little more than a month away. We are looking forward to it as always, and my sister Beth, mom Colleen, and brother-in-law Austin have already put a lot of work into it. Can't wait!

June 3, 2011

2011-06-03T18:57:00.000-07:00

This is a non Race 4 Grace post. The Sioux City metro is about to be hit hard by the Missouri River flooding. Not sure I understand everything, but I think it's been caused by damn releases and excess snow and rain up in Montana and North Dakota. The city has spent the last week sandbagging and moving people out of their homes along the river. Hopefully we're being overly cautious, but that's better than being under-prepared.

May 26, 2011

2011-05-26T06:24:00.000-07:00

A week of milestones for Grace. She turned 6 last Friday, I'm still having a hard time coming to grips with the fact that she's that old. She did all the usual treats to school stuff, and then Friday we took her and her best friend Madalyn to Chuck E Cheese's. Not a fan of that place, but the girls had fun.

Yesterday Grace finished kindergarten. She had a tremendous school experience this past year, she had a great teacher and the school was really good to her. She feels really good about school and is doing academic work well beyond her grade level. We are moving (again) this summer and she will be going back to Leeds Elementary (where she went to preschool). While we hate to have Grace leave Nodland, she did enjoy her experience at Leeds and they already know about her.

Now it's on to summer vacation. Today is the first day and she is definitely sleeping in!

May 7, 2011

2011-05-07T05:21:00.000-07:00

Hard to believe that Michelle and Grace only have 2 1/2 weeks of school left. Their last day is the25th. Meanwhile Grace's 6th birthday is on May 20. A lot of good stuff happening in the next couple weeks.

We've started to finalize some things with our plan for RAGBRAI this year. The plan is for the Race 4 Grace day to be Monday, July 25; which is the stretch that goes from Atlantic to Carroll. I'm sure we'll have some team members who'll go on Sunday and some who might go after Monday, but we're going to try to make Monday the official "team" day. More details to come!

April 24, 2011

2011-04-24T18:52:00.000-07:00

It's Easter night, and both girls are in bed. We headed up to Okoboji yesterday and spent yesterday and today with the family. Grace always loves seeing her cousins. The Easter Bunny was good to both girls, and we had the usual Easter egg hunt today.

Some good pub for members of Race 4 Grace Austin Scott and Crystal Recker. Austin (Grace's uncle and also the designer of this website) is in charge of Carroll's RAGBRAI website, while his significant other Crystal designed the Carroll RAGBRAI T-shirts. We decided this weekend that the official Race 4 Grace date will be the Atlantic to Carroll leg on July 25. This is a Monday and goes against our tradition of starting on Sunday, but we figured the opportunity to end in Carroll where we have so much family was too good to pass up. More details to come.

April 9, 2011

2011-04-09T06:41:00.000-07:00

Saturday morning, both the girls are woofing down some oatmeal. Grace is having a friend over to play this afternoon, so her whole focus is on that right now. Claire's whole focus is on making as big of a mess as she can with her oatmeal.

Grace went out to one of the TV station in town on Wednsday to film a promotional interview for Camp High Hopes here in Sioux City. We've written about this before, but Camp High Hopes will be a new camp for kids and people with disabilities. She did very well during the interview, and hopefully we'll be able to get that out to everybody once they finish it.

We went to Iowa City last week Grace's annual appointments with all her specialists. She did very well during a pulmonary function test with her lung doctor, and everything there looks good. We spent some with Dr. Mathews, who is he main doctor there who wev'e known since Grace was diagnosed. Finally we saw an orthapedist and had some x-rays taken of Grace's spine. The curvature in her spine has increased quite a bit, and we're going to try a brace for awhile. The goal is to keep her spine as straight as we can for as long as we can. Kind of scary to think about her eventual spine surgery, but we'll do the best we can to delay that as long as possible.

March 26, 2011

2011-03-26T18:42:00.000-07:00

Saturday night in Sioux City. Both girls are tucked into their beds. We head to Iowa City this week for Grace's annual appointments there. We'll meet with Dr. Mathews, who is her neurologist and the one who the specialist with SMA. We'll also meet with Dr. Starner, who is her respiratory specialist. Lastly, we'll meet with a new doctor (Dr. Dietz) who will deal with her spine issues--she'll eventually get curvature and scoliosis. Hopefully it'll be a good trip, always good to get down their to see the docs.

We had Grace's annual IEP meeting and her parent-teacher conference this week. Both went really well. The people at Nodland have really taken to Grace, and they do a great job taking care of her. We talked about how things will go in first grade, and they also told us they're going to put a special swing in their playground just for her. Great news there. She's doing very well in school. She's reading at an end of first grade/start of second grade level, and she also really enjoys the math they do. Still, however, she maintains that her favorite class is art.

Finally, much to my chagrin, Grace refuses to watch the NCAA Tournament with me. She told me the other day that she hates basketball unless it's a Briar Cliff game. I guess I can live with that.

March 13, 2011

2011-03-13T08:26:00.000-07:00

We're going to try to get some emails out this week to start promoting Race 4 Grace and our 2011 RAGBRAI ventures. Like always, we hope to get previous riders back and find some new riders. We haven't decided yet on some of the logistics of the week. We have traditionally started RAce 4 Grace on Sunday (the first day of RAGBRAI), and if we do that again we'll be starting in Glenwood. We are considering starting later in the week because we've got connections in some of the other overnight towns. Michelle has most of her family in the Carroll area, which is the overnight town on Monday night. And we know people around Boone and Altoona, which are the overnight towns on Tuesday and Wednesday. We'll see.

Otherwise things are good with Grace. We've been busy this weekend making a leprechaun trap, which is an assignment they have for school this weel. As usual Grace has thrown herself fully into this assignment (hopefully she'll keep that mentality when she's doing Algebra and Chemistry homework down the line).

We had to get a new part for her Dani because she'd gotten too tall for the original part, so we've been without her Dani for a couple weeks. You don't realize how much you rely on mobility until you don't have it! Thankfully we were able to get it put back together yesterday, and she's back in full motion with her Dani. The problem when we don't have her Dani is that we keep her wheelchair at school, which means she often doesn't have any way to get around in the house.

February 26, 2011

2011-02-26T12:22:00.001-08:00

A cold, snowy Saturday in Sioux City. Grace is just up for her rest time, which consists of her lying on the couch watching whatever her current favorite cartoon is. Right now that is My Little Pony Friendship, which is on some station called Hub.

We found out this week that Grace is going to be in a TV commercial. They're making one to promote the new Camp High Hopes here in town, which is a huge camp they're starting in town for kids with disabilities. It'll be the only one of its kind in the region, and it's a pretty cool thing. Anyway, we have to go to the TV studio sometime next week for Grace to shoot the commercial. She's pretty excited.

Otherwise Kindergarten is going really well. Grace has made a lot of new friends, and she really likes her teachers and the other staff at school. Even the custodian (Mr. Troy) is a pretty cool guy who really looks after her.

February 8, 2011

2011-02-08T08:53:00.000-08:00

Grace is home sick today with what we think is a sinus infection. Michelle is taking her to the doctor this afternoon, and hopefully it's nothing too serious. She's been really health all winter, and this doesn't appear to be anything major. She's spent much of the morning playing computer games--she's really into games that require logic and/or creativity.

January 30, 2011

2011-01-30T11:09:00.000-08:00

They announced the RAGBRAI overnight towns yesterday, which is always a big day for the start of Race 4 Grace planning. It'll start in Glenwood this year, get to Atlantic Sunday night, Carroll Monday night, Boone Tuesday night, Altoona Wednesday night, Grinnell Thursday night, Coralville Friday night, and Davenport Saturday night. Not sure what we'll do this year. Basically all of Michelle's family lives in the Carroll area, so I'm sure we'll try to do something connected there. Also there is probably a chance that Tuesday's route will go near or through Ogden, which was where I taught and coached for two years right out of college. We don't have any real connections to Glenwood or Atlantic, but I assume there is still a good chance we'll start on Sunday anyway. We'll see. More information to come.

January 22, 2011

2011-01-22T06:58:00.000-08:00

Winter is rolling along in our house. Grace got a little bit of the flu bug yesterday at school and had to come home early. She's doing a lot better today, and overall her health has been really good this winter.

Grace has been pretty busy with a number of things. She's in Girl Scouts now, and they have a Monday night meeting once a month. She has the Girl Scout pledge memorized, and she has managed to see a few cookies.

She's also had a couple music programs at school in the past month or so. They had a huge Christmas (or is it winter?) program at East High School, and then the other night they sang at a soup supper thing.

Grace is eligible to go to MDA camp this summer for the first time, and we're kicking it around. It's the premier camp in the country for kids with disabilities, and everything we've heard about it is really positive. On the other hand, we're not sure we're ready for her to be away from us for a whole week. Grace, however, says she'd be fine with it. Not surprising.

January 8, 2011

2011-01-08T06:18:00.000-08:00

Been awhile. We had a good Christmas, and now we're settling in for winter. Santa was good to the girls, and he even left a note for Grace thanking her for the milk and cookies. Grace was excited to go back to kindergarten this week, and we were happy about that. The neat development over the last couple months has been Grace's reading and writing. She's reading full books, and she can write pretty well. She'll always ask when she doesn't know how to read or write a word, and she seems to remember it the next time it comes around. At school the other day they had to say their goal for the new year, and Grace told us that she said she wanted to learn how to write more big words!

December 5, 2010

2010-12-05T09:24:00.000-08:00

'Tis the season. We're going to see Santa today, and it'll be interesting to see what Grace tells Santa she wants for Christmas. Grace's Christmas concert is tomorrow night at East High. She's been singing a lot of the songs at home, and we're excited to see her up on stage.

We just got back from Sunday school, which Grace really likes going to. She's learned quite a few prayers already, and she was pretty proud when she knew the "Hail Mary" today.

November 26, 2010

2010-11-26T06:58:00.000-08:00

The day after Thanksgiving. We went to Marcus yesterday and spent time with my extended family. Michelle is taking the girls to Carroll today to spend the weekend with her family (while I'm away with our basketball team).

Grace is doing well. She has a Christmas concert coming up next week. She's reading and writing more words all the time--right now she's sitting next to me writing the word "tangled" next to a drawing. Not sure why, but I'm sure there is a reason.

Happy Thanksgiving!

November 20, 2010

2010-11-20T07:37:00.000-08:00

Saturday morning in the Nelson house. Claire is running all over the house leaving a wake of destruction in her path. Grace is sitting here at the kitchen table with me making crafts. She has been really into drawing and making crafts these past few months. Currently she's making a "Touch-Read System" which I think is a toy she saw on TV and in a store. All I know is that the scissors and many pieces of tape are involved.

Grace is wearing her new glasses this morning. They're purple with butterflies on the sides of the rims. We got them to protect her eyes, which she had severely poked three times since school started. We'll try them for a while, so far she doesn't seem to mind them. They definitely make her look very mature.

Grace has a Christmas concert coming up at school in a few weeks. Sounds as though they'll be doing a number of the classics as well as some new ones, such as "Polar Puppy". At least that's the one Grace has been singing around the house a lot lately.

Grace's Christmas wish list grows with each new day and more importantly each commercial on the Disney Channel. Advertising really does work.

November 5, 2011

2010-11-05T11:30:00.000-07:00

Friday, and Grace has the day off from school because of parent teacher conferences. We had her conference on Tuesday, and it went very well. Her teacher told us that she's the best reader in the class, and she's doing very well socially. She is very good at listening to directions, but if there is one thing she needs to work on, it's that she sometimes talks too much. We weren't surprised by that.

We are looking into getting eyeglasses for Grace. She has gotten poked in the eye three times in the last couple months, and each time it's been awful for the next few days. So the glasses will be for protective purposes. We'll see how that goes.

October 31, 2010

2010-10-31T06:35:00.000-07:00

It's Halloween Sunday, and trick-or-treating will be tonight. Grace has officially settled on being Cinderella, and she's already worn the costume one time at her kindergarten Halloween party. Hopefully the rain stays away tonigh for our outing. We're also bringing Claire, though we don't know her costume yet.

School continues to go well for Grace. She was the "Beary Special Person" in her classroom last week which meant that she shared things about herself and got to do some fun things. She definitely loves going to school.

Grace spends a lot of times these days drawing pictures. She's really taken to it, and she's pretty good. Although last night she drew a scarecrow in which one hand was about 20 times bigger than the other. Pretty funny.

October 17, 2010

2010-10-17T08:02:00.000-07:00

Grace and Michelle are at Sunday school right now. Grace started that this year, and she's really enjoyed it so far. We've also started teaching her some new prayers at home, and she's amazingly good at learning them.

Grace has spent a lot of time playing outside lately, mostly because the weather has been beautiful for a few weeks now. We got some new neighbors a couple months ago, and they have four girls--one of whom goes to Kindergarten with Grace. So that's been a great thing, as the kids are constantly playing outside between the two yards.

Grace and Michelle are planning on putting the finishing touches on Grace's Halloween costume today. The problem is that a final decision on the costume hasn't been made. It was Cinderella for a long time, then about a month ago it switched to Jesse the cowgirl from Toy Story. Suddenly this morning it switched back to the possibility of Cinderella. Stay tuned.

October 9, 2010

2010-10-09T06:29:00.001-07:00

We're heading to Omaha today to a pumpkin patch that we've heard is a great time for kids. Grace had her appointments with her Iowa City specialist last week, and everything checked out 0-kay. We'll head back to Iowa City in March unless something comes up in the meantime. Grace has joined the Girls Scouts; Michelle went to the first parent meeting the other night.

September 25, 2010

2010-09-25T17:34:00.000-07:00

It's been a pretty busy September. We spent last weekend in Des Moines and participated in the Beaverdash, which is a 5K run that is the annual fundraiser for the Iowa Families of Spinal Muscular Atrophy. Despite the cold and rain we had a good time, and it was great to see all the other Iowa families, if only for a short time. They have a wheelchair race for the SMA kids after the 5K, and Grace got 2nd place! She actually referred to herself as second winner, which sounded good to us.

Kindergarten continues to go very well for Grace. Friday morning she was telling me all the things she loves about school, and it was a long list. We need to give a special shoutout to "Mr. Troy the Janitor" who replaced a screw in the part that holds her battery on her Standing Dani. In the process of playing tag at recess Grace had run over a big stick that somehow loosened the screw and caused the battery to fall off.

Grace has her annual appointment with the Iowa City people in Sioux City on Monday. They come to town once a year, then we go there once a year. Hopefully everything will check out o-kay, she's been doing very well health-wise.

September 6, 2010

2010-09-06T09:59:00.000-07:00

We've had a good Labor Day weekend. Grace went to her best friend Madalyn's house on Saturday for most of the afternoon. Grace and Madalyn spent a year together in preschool and have everything in common, and this summer they started having regular play-dates at each other's house. They're going to different schools now for Kindergarten, but hopefully they'll continue to stay friends.

Sunday we went to Breda for the baptism of Grace's cousin Sophia, then we headed up to Okoboji to go boating with her Grandpa and Grandma Nelson. We lucked out with the weather and had a great time--and both Grace and Claire had their first experiences at the Barefoot Bar. We stayed in a hotel up their last night and just got back to town a little while ago.

Kindergarten continues to go really well for Grace. She loves every part of it and talks about a number of friends.

Can't remember if I put this in our last post, but Grace got to meet Kirk Hinrich last Monday. She didn't think it was a big deal until she got to the event and saw all the people and cameras, then I think she felt pretty special. He autographed a T-shirt for her, but the funny thing is that at this point in her life an autograph from a Briar Cliff basketball player would probably mean more to her.

August 29, 2010

2010-08-29T12:42:00.000-07:00

Grace has had seven days of kindergarten, and she loves it. She really likes her teacher, and it sounds like she's made some good friends in her class. Nodland is a small school that is only K-2, and we like that. They moved all her equipment from preschool, so she pretty much already had everything she needed at the start of the year (classroom chair, lunch chair, etc.).

This weekend Grace is battling Strep Throat, which is no fun. She started not feeling well Friday night, and Michelle took her in on Saturday morning. She's had a full day of medicine now, and as of Sunday afternoon she's feeling a ton better--pretty much back to normal.

Tomorrow Grace gets to go to a photo shoot at Kirk Hinrich's annual golf benefit in town. She got invited by the people at Camp High Hopes, which is the main benefactor of Kirk's event. Camp High Hopes will serve children with disabilities, and it's supposed to be open within the next year. There is nothing like it all anywhere close to Sioux City, so it should be a really positive thing for the region.

The Beaverdash in Des Moines is about three weeks away, and we're looking forward to being there this year. It's the main fundraiser for the Iowa SMA, and a lot of the Iowa families turn out for it. We missed it last year because Michelle was about due with Claire, so it'll be great to get back.

August 18, 2010

2010-08-18T07:47:00.001-07:00

We're close to a milestone in the Nelson house: Grace starts kindergarten tomorrow. We had back to school night last night, and that just increased Grace's excitement level. We're happy because she can't wait for school to start, and she's never expressed any fear or concern about her new school. Her teacher Mrs. Hunter seems very nice, and she'll have the same classroom aide she's had the past two years in her preschool.

Michelle and Grace starting school means the summer is coming to an end. All in all we've had a great summer, starting with our Make-a-Wish trip to Orlando and Disney World in June. We had a positive trip to Iowa City for Grace's annual appointments there in early July, and in late July we had our most successful Race 4 Grace ever. On that note, we're getting ready to send out T-shirts to those who don't have them yet and thank you's to everybody who participated.

August 1, 2010

2010-08-01T19:36:00.000-07:00

RAGBRAI is over, and it was a great year for our annual Race 4 Grace event. We had a booth in both Sioux City and Kingsley during the first and second days, and our riding team went three days. We had quite a few people who participated in RAGBRAI for the first time, and we've had a ton of people participate in Race 4 Grace for the first time through their donations. We have so many people to thank, and we'll get to all that. We also have a lot of pictures from RAGBRAI which we'll get on the site eventually. We are still taking donations, and we are pretty much assured of having our best fundraising year since our inaguaral event in 2007. We've also gotten a lot of great publicity, getting articles in the Des Moines Register, the Sioux City Journal, and even in the Sioux City Diocese Catholic Globe newspaper. More to come!

July 19, 2010

2010-07-19T05:52:00.000-07:00

Six days to RAGBRAI. The Sioux City Journal did a story on Race 4 Grace for Sunday's edition, and they put a video on their website. For some reason I can't figure out how to copy the video into this post, so if you're curious, go to www.siouxcityjoural.com and find the video link. They did a good job.

This week will be the usual last week stuff of finding out who's riding, who needs bikes, who's driving, how we're getting people home, etc. Should be a blast!

July 8, 2010

2010-07-08T08:05:00.000-07:00

We got back from Iowa City this week from Grace's annual appointments there. We saw a number of the doctors who've worked with her since her diagnosis, and as usual it was a busy day there. All in all it was a good trip, and we don't have anything new to report. She's doing extremely well, and we're very happy about that. We'll see her main doctor from Iowa City again when she comes to Sioux City in September.

Grace is really into Toy Story right now. Michelle and her went to Toy Story 3 in 3D last week, and so of course she's consumed with it. I think it was Grace's first movie in a theater, and she enjoyed all that as well.

Saturday, July 3, 2010

2010-07-03T06:14:00.001-07:00

Beginning of the 4th of July weekend. We're heading up to Emmetsburg tomorrow to spend the day with my extended family, then early next week we're heading to Iowa City for Grace's annual appointments there. We don't have anything specific that we're going for this summer, mostly just to see all Grace's doctors there.

Grace's summer is going well. She's been pretty busy with swimming, little league, play dates, etc. She's going to start a ballet class in July, and that could be a little bit of an adventure. The class's teacher is going to make some accommodations, and Michelle and Grace have been to watch one of the classes. We'll see.

RAGBRAI is now only three weeks away. Preparations are coming together. If you're reading this and want to be involved somehow, get a hold of us asap.

Make-a-Wish Trip

2010-06-22T19:26:00.000-07:00

So here's a brief rundown of Grace's Make-a-Wish trip. Make-a-Wish is phenomenal, they pretty much take care of every detail for you. We stayed at a great place called Give Kids the World, which is basically a resort that caters to Wish families. We stayed in our own villa, which was a two bedroom, two bathroom condo. The Give Kids the World Village had three different places to eat, a great pool, and numerous activities for Grace. We could've had a great week at the village without ever leaving, but we had too much to do! Here's the rundown:

Sunday, June 6
We flew out of Sioux City, had a layover in Minneapolis, and arrived in Orlando mid-afternoon. First time flying for both girls, and the power wheelchair in the airport was a little adventure.
After we checked in we settled in, then Grace went to play life-sized Candyland in their boundless playground (she could take her wheelchair everywhere in the playground). We finished the night by having ice cream--the village had a place you could get free ice cream any time of day.

Monday, June 7
Grace met Goofy, Mickey Mouse, and Minnie right after breakfast in the village. Then we headed for the place Grace wanted to go all along--Magic Kingdom. Grace got to meet Belle, Buzz Lightyear, Cinderella, Sleeping Beauty, Jasmine, Ariel, and Eric--these meetings were definite highlights for Grace. Her favorite rides at Magic Kingdom were the Snow White ride and Goofy's coaster. We also went to a Beauty and the Beast show at the park, as well as going through Cinderella's castle. All in all a very full day for all four of us!

Tuesday, June 8
Grace met Spongebob after breakfast, then we went swimming. The pool had a great splash area and had some manual wheelchairs made out of PVC pipe--we'd never seen these before but they were perfect for the splash area. Then we went to Hollywood Studios for the day. We went to a number of shows, including the Voyage of the Little Mermaid, Beauty and the Beast, Muppets 3D, and the Mickey Mouse Clubhouse. Grace got to meet Woody and Buzz Lightyear again, and her favorite ride at Hollywood Studios was the Buzz Lightyear ride. We went swimming again that night.

Wednesday, June 9
Both Grace and Claire got to ride horses after breakfast Wednesday morning. We then headed for Sea World, where we fed dolphins, watched Shamu's show, and rode on another good roller coaster. That night Grace spent some time in the Castle of Miracles back at Give Kids the World. The Castle of Miracles was one of the major activity places at the Village. There she got to interact with the star fairy, make her own pillows, and spend some time in the La Ti Da Spa. At the spa she got a hand massage, a tatoo, a manicure, and a makeup job. Right up Grace's alley. Then later that night we had one of the highlights of the trip. They had a Village Idol contest, in which the kids could actually be contestants in an American Idol like contest. I was surprised, but Grace entered and did a great job. She drove her wheelchair up on stage in front of everybody and sang two songs. Definitely brought tears to her parents' eyes. She got a big ovation, and we've watched the video almost daily since then. Hopefully we can figure out how to get the video on the site.

Thursday, June 10
My parents arrived in the middle of the night to spend the rest of the trip with us, mainly to help take care of Claire. That day we took Grace to Universal Studios and Islands of Adventure parks. Some of Grace's favorite rides were the Woody Woodpecker coaster, and Jaws. The Twister ride terrified her (what were we thinking?). We also watched Shrek 4D, and she met Dora the Explorer. At Islands of Adventure she rode the Pteradon Flyers, the Dr. Suess train, and we went through the new Harry Potter part of the park. Later that night we swam even more (theme of the trip, Grace loved the pool).

Friday, June 11
We went back to Magic Kingdom again. We went to the Mickey Philharmonic show, rode the train, and did some more of Grace's favorite rides. That night they had a Pirates and Princesses activity for the kids back at the Village, so Grace got turned into a princess. Right up her alley. Then we swam some more.

Saturday, June 12
We had to be up early to catch our flights. Everything went smoothly on the way home, and we were in Sioux City by 5:00 pm. An absolute whirlwind of a trip, and definitely an awesome one!

I didn't proofread this, so sorry for any errors.

June 20, 2010

2010-06-20T13:32:00.000-07:00

We've been back from Grace's Make-a-Wish trip for a week now, and we're still trying to get caught up with everything. And that is my feeble excuse for not writing until now. We will post a full rundown (hopefully with pictures) of our trip sometime this week.

It was a great trip. Make-a-Wish does a great job, and Grace had many, many memorable experiences. Highlights included Disney World, Universal Studios, Sea World, meeting a number of the Disney princesses, many rides, swimming, and much more. Grace also competed in something called "Village Idol", which was an American Idol-style competition for kids at the place we were staying. She brought her parents to tears during that, and we've got the video if we can figure out how to get that on-line. Much, much more later.

Also, RAGBRAI is little more than a month away!

May 29, 2010

2010-05-29T07:28:00.000-07:00

School's out for summer. Yesterday was the last day of the school year for both Michelle and Grace, and both will be at new schools next year. Michelle has been transferred to Washington Elementary School, where she will teach 2nd grade. The best thing about the transfer is that Washington is less than a four minute drive from our house, whereas Riverside Elementary where she's been is almost a twenty minute drive from our house.

Grace will go to Kindergarten at Nodland Elementary next year, after being at Leeds Elementary the past two years. Her preschool experience was outstanding, thanks largely to the teachers she had. She will have the same teacher's aide next year, which will be really nice for her.

The summer will be a good one for the girls, starting with our Make-a-Wish trip to Disney World in a week. The Make-a-Wish people came over Thursday night and brought us our "trip packet" with basically everything we need for the trip. It will be a great time, and we'll be sure to write plenty about it when we get back.

Also, Claire had her first crawl this morning. We predict she'll be all over the house by the end of the weekend.

May 18, 2010

2010-05-18T07:51:00.000-07:00

Birthday week. Grace will turn 5 on Thursday. She'll bring treats to school that day, and on Saturday she's having a birthday party with the girls in her preschool class. She's got a few close friends in that class who are all coming, so it'll be a great day for her. We're so thankful for Grace's good health over the past year, and we hope and pray it continues in the coming year. She's a pretty special 5 year old, but maybe we're a little biased.

Grace was featured in a news story on one of the tv stations here in town last night. It was a story on the little league baseball league she's playing in. The league is for kids with physical and mental disabilities, and this is her first year playing. Below is the link to the video, I'm not sure if it'll work on this blog or not. If it doesn't work you can go to ktiv.com and search under sports. It was pretty cool for Grace to be interviewed, and she did well.

http://www.ktiv.com/Global/story.asp?S=12496156

May 1, 2010

2010-05-01T08:34:00.001-07:00

Today is the first of May, and Grace is keenly aware that this is her birthday month. Hard for us to believe that she'll be five in a few weeks.

Tomorrow is Grace's first night of Challenger baseball. They have a really good little league program here in Sioux City for kids with disabilities, so tomorrow Grace makes her first foray into competitive sports. I'm guessing she will not be a gamer. She'll be more concerned about how she looks and what her team name is. In fact she wasn't happy the other day when she found out her team name was American Postal, and not the Ballerinas as she'd been hoping for. We're excited for it, though, because it'll be a new and different experience for her.

Grace will have a pretty busy summer. We're also looking at having her take a ballet class. She really wants to, and we've had some contact with some of the studios here in the city about working with someone in a wheelchair. So far we've gotten a good response. Grace told me the other day that she wants to make sure she takes an "arm ballet" class so she can participate, so she's obviously been thinking about how she can participate. She's come to grips with her limitations and is remarkably positive about them.

April 22, 2010

2010-04-22T08:52:00.001-07:00

We are now three months from RAGBRAI and Race 4 Grace 2010. More details to come as we get them in place.

Not too much else is new in Grace's world these days. She has made her dad proud by taking a liking to baseball. She's actually good at making contact with the ball, and she has a good grasp of running (or driving in her case) the bases. She will cheat to suit her purposes, but who doesn't do that? Our front yard is perfect for baseball, and lately we've been doing that just about every night. We also got a little basketball hoop for the driveway, but at this point she hasn't played with that as much. Maybe Claire will be the one who takes to hoops. Given Grace's penchant for dolls, dress-up, princesses, and all other things girl, I'm just happy she's willing to play any kind of sport.

April 11, 2011

2010-04-11T19:17:00.000-07:00

Good weekend at the Nelson house. Grace had a playdate on Saturday at her friend Madalyn's house. They are best friends at preschool, and Madalyn wanted to have Grace over for her birthday. We didn't bring in Grace's wheelchair or Dani because the house wasn't made for it (split-level), but both Madalyn's parents were around to help haul Grace around the house as need be. Grace has made some really good friends at preschool this year, which given her social nature, isn't too surprising.

Today Grace and I played baseball outside. We just got her a new bomb bat with some big whiffle balls. She's actually really good at making contact with the ball when I pitch to her. We've just started working on some of the other basic concepts, such as tagging the baserunner and running the bases in correct order. Grace has the order down, she just does't always feel the need to run over the bases in her wheelchair.

We're now less than two months away from Grace's Make-a-Wish trip to Disney World, and we're getting excited about that. It'll be the first time we fly with Grace's equipment, so that part of it could be an adventure. Plus it'll be Claire's first time flying. Man I feel sorry for the other people on that flight!

March 27, 2010

2010-03-27T08:04:00.000-07:00

Right now in the Nelson house we are playing "Princess", which is make-believe play that can take many forms. 90% of the free time in our house is spent playing Princess. Today's version has Michelle as the evil stepmother who has given Princess Grace numerous chores to do around the house. Right now the Princess is dusting the furniture with a rag. Come to think of it, maybe Michelle has a plan behind today's activities. I am the nice stepfather who provides support to Princess Grace. Claire is Dopey Dwarf, either because she's currently wearing purple or because she can't talk.

Grace had Kindergarten roundup this past week, and that went really well. She got to meet all the teachers and the principal at the school, which is called Nodland Elementary. It's a K-2 building that will be perfect for Grace. She was really excited about it and couldn't wait to tell all her preschool classmates about it. Also got 20 right out of 2o on a little reading assessment they had all the kids do. I don't mind saying that she dominated it.

March 21, 2010

2010-03-21T19:52:00.001-07:00

The end of a long weekend of watching basketball. Grace told me today that she only liked watching basketball when it's "real", meaning Briar Cliff games. Not that she actually watches those, but at least those games have a concessions stand and real life cheerleaders.

Grace and Michelle spent much of the weekend out of town for a baby shower for Michelle's younger sister. Grace had fun and was excited that she met a new friend. Grace is unbelievable at making new friends. I personally watched her make two "friends" within the span of a few hours last weekend. First in church she befriended the girl in the pew in front of us, mostly because Grace's princess dollies caught the girl's eye. After a few minutes of quiet play Grace whispered to the girl, "Do you want to be my friend?" And they were friends for the rest of the service. Then that night Grace went with me to watch the Briar Cliff women in the NAIA national tournament, and there the exact same thing occurred. By the second half some girl was sitting by us, the two were playing, and Grace had invited her over to our house to play sometime. We'll never see the girl again, but for that night it was all good. Shyness is definitely not a trait possessed by Grace.

March 6, 2010

2010-03-06T07:37:00.000-08:00

It's our first non-basketball weekend in five months, and we hardly know what to do with ourselves. As much as I hate it when basketball is over, I'm happy to see the girls and help out more at home. Grace has a play date this afternoon with one of her friends from preschool. What's interesting is that the friend is a boy named Walker. Grace normally loves playing girl stuff, but her and Walker have been good friends at school all year. Grace was concerned at first about Walker and his two little brothers not having any girls toys, but apparently they've worked it out. Their plans are to play detective and zoo. Grace is at the age where, rather than necessarily playing with toys, what she loves most is playing scenarios (house, school, mermaid, detective, hospital, zoo, etc.) Grace doesn't go to others' houses much largely because of her wheelchair and all that entails, but we're gonna make it work today.

There was an article in the paper today asking for ideas for Sioux City's RAGBRAI slogan. Maybe they should name it Sioux City: Home of Race 4 Grace 2010.

February 28, 2010

2010-02-28T11:53:00.000-08:00

Sunday afternoon, the last day of February. Michelle is at Target, Claire is taking a nap, and Grace is resting on the couch while watching one of her favorite cartoons, Angelina Ballerina. Grace has talked a lot recently about wanting to take a ballet class sometime, and we do intent on looking into some adaptive dance opportunities for her. Not sure if she'd take dance with regular kids and just do what she can in her wheelchair or if there are actually adaptive dance classes.

We got a big packet in the mail yesterday for Grace's kindergarden registration, and that's both scary and exciting. More scary for us probably, because Grace will no doubt excel.

If you're reading this hopefully you've been on the website and seen the new layout, courtesy of Michelle's brother Austin (our resident web designer). We'll certainly get more details about RAGBRAI up as we get closer to the event.

Finally, I apologize if I've already written this in another entry, but we found out this winter that Grace had a wish granted from the Make-a-Wish foundation. So this summer we get to spend a whole week at Disney World's "Give Kids the World" resort, which immerses you fully into the world of Disney. Needless to say it'll be perfect for Grace.

February 18, 2010

2010-02-18T12:59:00.000-08:00

Mid-February in the Nelson house, and all four of us are ready for spring. Claire has had both RSV and an ear infection in the last week, so we've been pretty careful with both girls. Michelle is probably ready for basketball season to be over soon, because this winter has been pretty hectic for her.

We survived Valentine's Day, a holiday that is right up Grace's alley. She made princess valentine's for all her classmates, and we were pretty proud because she was able to write all her classmates names. She's really catching on to reading and likes it, which is great. She came home from preschool with a huge pile of candy, most of which her dad has eaten.

Grace is really growing up, looking and acting more and more like her mom every day. Most of the time that's a great thing! But it does mean that I now have two people to correct all my mistakes, and they both do a great job of it.

February 5, 2010

2010-02-05T13:37:00.000-08:00

Just another snowy weekend coming up in Sioux City. Grace has started to complain quite a bit lately about the cold and snow, I think she's as ready for spring as her dad is. She's also been talking lately about her dad building her a clubhouse this spring and summer. She is still young enough to think that her dad can do anything in the world. Someday she'll realize that her dad can't build things, and that day will be a sad one.

Scary to think that we have kindergarten round-up to schedule and attend in the next month or so. It should be a pretty smooth transition because she's already been in the school district for the past two years as part of its preschool. Because of that they already know about Grace's equipment needs and the necessary accomodations. Plus the aide that Grace has had the past two years may continue with her next year as well, which would be comforting for Grace.

January 31, 2010

2010-01-31T11:53:00.000-08:00

They announced the RAGBRAI overnight towns last night, and this year it will start in Sioux City! Needless to say, hopefully we can make this year's Race 4 Grace the best yet. Stay tuned for more details as we get closer--but for now clear Saturday, July 24 on your summer calendar.

January 26, 2010

2010-01-26T06:21:00.000-08:00

A busy winter continues at our house. Nothing new, but here are some updates on Grace over the past few weeks:

She's been obsessed with her teeth ever since a dentist visited her classroom last week. She's been to the actual dentist quite a few times, but apparently this dentist scared them with tales of cavities and other horrors. Thus we no longer have force Grace to brush her teeth, and she's probably brush them hourly if we let her. This morning at breakfast she asked me to re-explain to her what plaque is.

Also at breakfast this morning Grace explained to me that "It's a big responsibility to have a baby sister." Apparently she feels burdened by Claire, even though I'm not sure what Grace's actual responsibilities are (other than not running her over in her wheelchair). The fact that Grace can stop on a dime in her wheelchaire still doesn't make us feel any better when she veers dangerously close to Claire lying on her activity mat. Grace has also discovered that she gets some enjoyment out of grabbing the ropes on Claire's "Johnny Jumper" and pulling them as she backs away in her wheelchaire--sort of a swing concept. I'm not sure that's a good thing, but Claire hasn't complained too much. On the other hand Claire can't talk, and she does have a look of terror in her eyes when Grace grabs the ropes.

January 16, 2010

2010-01-16T11:36:00.000-08:00

We're heading to Carroll later tonight (after our home basketball game) for the family Christmas on Michelle's side. We never got over there around Christmas because of the weather, so we're doing it this weekend. More presents for Grace and Claire--they're going to get an unrealistic picture of that Christmas is!

Both girls have been pretty healthy lately. We just registered Grace for Kindergarten round-up this week, which is pretty scary. We have a lot of things to do for this that "normal" families wouldn't have to do, such as finding handicap accessible classrooms, getting Grace an aid, figuring out transportation, etc. I'm definitely not complaining, becuase it's more than worth it to get Grace the best situation possible. And if Kindergarten goes half as well as preschool has, we'll be pretty lucky.

Had a funny scene at our house this morning. Grace has two toy cell phones, and she was holding up one to Claire's ear so that the two could have a pretend phone conversation. It was pretty funny.

January 7, 2010

2010-01-07T08:12:00.000-08:00

Grace is home sick with the stomach flu today. She got it overnight and had a long night of throwing up quite a bit. Michelle had it a few days ago, so we assume that's where it came from. I'm home with her this morning, and it seems like she's already feeling a little better. I know this because she's asking if she can get down and play. As of now I'm saying no.

We had a good albeit snowy Christmas. Santa was very good to Grace, even though her parents didn't really think she needed anything new. We spend a little longer at my parents in Le Mars than we had planned because of the Christmas blizzard, and that also prevented us from getting to Michelle's side of the family in Carroll. We're now planning on heading there next weekend for that Christmas. And in case you're wondering, Grace has already started accumulating ideas for what she wants for next Christmas.

December 23, 2009

2009-12-23T07:18:00.001-08:00

It's the day that's the title of one of Grace's favorite Christmas books, "The Day Before the Night Before Christmas." Michelle and Grace are out doing some last-minute Christmas shopping, trying to beat the coming snowstorm. Grace has managed to maintain some sense of sanity despite her excitement over Santa's upcoming visit to our house.

We will have a pretty low-key Christmas, not having to travel too much. We'll head to my parents on Christmas Eve, then go to Michelle's family in Carroll this weekend. Santa will probably come to my parents house, as we're planning on staying overnight there that night (if we can get there in this supposed blizzard that's coming).

We've been fairly healthy in our house so far this winter, especially Grace. Claire is just getting over a cold, and right now Michelle and I are both battling colds. But nothing serious, and hopefully that continues.

We look forward to the new year, and remember that it's usually sometime in January or February that they announce the RAGBRAI route. We're counting on a return to northwest Iowa this year, because it's started in southwest Iowa the last two years. I have predicted that the ride will start somewhere between Sioux City and Sioux Center, which would be great for our northwest Iowa family and friends! If my prediction comes true, we hope to make this the best year yet for our now annual Race 4 Grace event.

December 11, 2009

2009-12-11T07:07:00.000-08:00

Two weeks until Christmas, and this morning Grace repeated her laundry list of things she wants from Santa Claus. It's a pretty exhaustive list that's actually stayed pretty consistent the past couple months. She also asked me this morning if I think she'll get any presents this year, which allowed me to slide in the typical "as long as you're a good girl at preschool" until Christmas.

Both Grace and Claire are battling small colds right now, but neither appears serious. Claire has started to smile a lot lately, and in the last week or so Grace has really taken a liking to talking to her. The other day Claire was crying and Grace was singing to her to try to calm her down--it was hilarious.

November 29, 2009

2009-11-29T19:09:00.000-08:00

The end of a busy Thanksgiving weekend. We spent time with both our extended families, and Grace loves every second of that. She really loves spending time with her cousins, and I hope that always stays that way. They are good to her and look after her as well.

We've had to make a little change in the past couple weeks--taking Grace off valproic acid and carnitine. She developed a very bad rash over her whole body, and after a couple weeks of trying different things, her pediatrician decided that the rash was coming from the medicine (and her Iowa City specialist agreed). We are really disappointed, because we felt that the medicine was having a positive effect--Grace seemed to have more energy, a better appetite, and some increased strength. We may try again when the rash is completely gone, but at this point we're not sure. While we want to try everything we can for her, we don't want her to be absolutely miserable--and the rash was getting to that point.

November 15, 2009

2009-11-15T09:33:00.000-08:00

Noon on Sunday, and Grace and Michelle just left to shop for new shoes. Grace is still definitely on the small side for her age, but she has grown quite a bit the past six months or so. I'm not sure, but today I think they're shopping for some dress shoes. Grace is no longer wearing the braces that cover her entire legs, but she still does wear her AFO's, which stand for ankle-foot-orthotics and basically go just above her ankles. She has to wear special shoes with her braces, but she wears normal shoes on the occasions when we don't make her wear her braces (which isn't very often).

Grace went to her first Briar Cliff basketball game of the year yesterday, and rumor has it she had a great time. The Flanagan Center at Briar Cliff is a great place for her to be in her Dani, because there is a lot of open space and multiple floors to drive around on during the game. She continued her tradition that she started last year, coming into the locker room with me after the game and giving all the guys 5's. She loves doing that, the guys love seeing her, and I love bringing her in there with me. We don't do it when we lose, so there is added pressure to win the games she's at!

November 4, 2009

2009-11-04T07:29:00.000-08:00

Busy past couple weeks. Grace had a blast on Halloween. She made a mid-day change, switching from wanting to be Cinderella to wanting to be a cheerleader. So she was Cinderella for her school party, but a cheerleader for actual trick-or-treating. It worked out really well in her Dani, and she flat out loved it.

We think Grace is doing pretty well on the Valproic Acid. We feel like she might be a little stronger and slighly more energetic late in the day, which are both positives. This all might be in our minds, but it does seem like she can stand a little more than before we started the treatments. We've continued to get her blood tested and haven't seen any negative results from that, so we'll keep going.

October 18, 2009

2009-10-18T13:22:00.000-07:00

Beautiful Sunday in Sioux City. Claire just woke up from a nap and is ready to eat, and Grace is ready to play dress up. Being ready to play is a never ending stage for Grace. Today she is rotating between dress up, drawing, polly pockets, doctor, and kitchen. While she is o-kay at being willing to play by herself, much of the time she demands a play partner. Now that it's basketball season and I'm home one day a week, Sunday is dad's play day.

Michelle spent her first full day home with both girls yesterday, and she was worn out! Claire keeps her pretty busy wanting to eat every hour (it seems), and Grace always finds a way to keep us busy. Things will be a little more normal at our house now that Michelle is cleared to lift Grace and drive, neither of which she'd been able to do since her C section.

We got word Friday that Grace's preschool had been exposed to H1N1. That's a little scary, but we'll monitor Grace closely. She's been really healthy this school year so far.

October 10, 2009

2009-10-10T07:30:00.000-07:00

October 10 and there is a little snow on the ground in Sioux City. Are you serious? We have a quiet weekend at home planned, and it's badly needed. Our first week at home with Claire has been pretty hectic with the combination of people at the house and my first full week of basketball practice.

Grace is doing really well with the changes. She really loves Claire and enjoys holding her. Her school year is going really well. I'm continually amazed at how she knows so many kids at her school (not just the kids in her classroom). We already anticipate her report cards being filled with comments such as "Grace talks too much at time and is too social." Oh well.

Michelle and Claire are doing really well. Claire pretty much sleeps and eats, and Michelle pretty much feeds Claire while trying to squeeze in sleep when possible.

September 29, 2009

2009-09-29T14:59:00.000-07:00

Big day in our house. Grace's baby sister was born this morning. Claire Marie Nelson. 6 pounds, 5 ounces, 18 inches, full head of hair. Claire and her mommy are both doing well right now. The plan is for Michelle and Claire to come home from the hospital on Friday. Grace is overwhelmed with joy and excitement at the idea of having a little sister. When I called and told her the news this morning her quote was, "I just knew we were going to have a baby sister!" We'll get some updated family pictures on the website when we get a chance.

September 22, 2009

2009-09-22T07:19:00.001-07:00

If you're reading this we're assuming you've had a chance to look at the updates to the websites. Michelle's brother Austin made the changes, and we think they look great. He added a ton of pictures from this year's RAGBRAI, and the home page of the site includes a list of all the participants in this year's Race 4 Grace. We're thrilled to have so many new donors, and we are so appreciative to everybody. We're close to sending our final check in to the Iowa FSMA, and we can are happy to say that we raised a lot of money this year!

September 10, 2009

2009-09-10T05:56:00.000-07:00

All is good here. We're busy getting ready for baby #2, and Grace is especially excited. She is constantly saying that it's taking forever for the baby to come, but overall she seems to have a pretty good grasp of the whole baby thing. She says that she'll be happy with a baby brother or a baby sister, but if you press her, she would prefer a sister. That's not surprising to us, because she'd see it as an opportunity to have another doll to dress up and play with.

Grace is off to a very good start at preschool. She still loves it, and she remains one of the more social kids in her class. When we bring her everyday, she says hi to pretty much everybody (students and teachers). One skill Grace has (that her dad definitely does not) is an uncanny ability to remember names. We're continually amazed when she'll remember the name of a person who she met months ago. It took her about a day or two to know everybody in her class, and she knows the names of a lot of the kids at her school who aren't even in her class. Not sure if we can make money off that skill, but maybe we should look into it.

August 31, 2009

2009-08-31T08:03:00.000-07:00

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

2009-08-22T07:33:00.001-07:00

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

2009-08-17T05:25:00.000-07:00

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

2009-08-09T06:20:00.000-07:00

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

2009-07-23T07:08:00.000-07:00

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

2009-07-16T06:56:00.000-07:00

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

2009-07-10T06:06:00.000-07:00

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.

July 4, 2009

2009-07-04T05:35:00.000-07:00

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.

June 26, 2009

2009-06-26T09:25:00.000-07:00

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.

June 5, 2009

2009-06-05T08:30:00.000-07:00

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.

May 27, 2009

2009-05-27T13:57:00.001-07:00

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!

May 24, 2009

2009-05-24T07:59:00.000-07:00

Sunday morning of Memorial Day weekend. Grace turned 4 on Wednesday, and she made the most of it. She was so excited she woke up about a half hour earlier than normal that morning. She had a great day at school, as I think her classmates, teachers, cooks, custodians, and all other school personnel knew it was her birthday (most likely because she'd been telling all of them it was coming for the past month). Then we took her out to eat that night so she could get sung to (again), and right before bedtime we gave her her big present, which is a humongous dollhouse with about 80 pieces of furniture.

The previous weekend we were down in Pella, and we got to spend a little time with our friends the Turnbulls. Their little Stella is doing well, and we're excited that they're planning on heading to the FSMA national conference in Cincinatti (we are too) in June.

Tomorrow we're having a little gathering for Grace's birthday, and we have family from both sides coming, as well as some friends from in town. Should be a fitting finale for Grace's birthday week.

Grace hasn't talked much the past couple weeks about not walking, and we're wondering if maybe she' started to get a grasp of it. There for a while she seemed really frustrated with things and would get upset pretty easily, and we didn't know if it was an age thing or her coming to terms with not walking like other kids. We've tried to continue to be honest and positive with her.

We STILL don't know the results of the SMA test on our new baby, but we expect to get that call early this week. We haven't let up in praying for good news, but either way it'll be nice to know and get this waiting over with. It's been a pretty excruciating four weeks!

May 11, 2009

2009-05-11T18:25:00.000-07:00

I sent this to many of you in an email, but in case you didn't get that, we found out today that it will be another two weeks before we know the results of the SMA test on the baby. The clinic that did Michelle's amniocentesis called today and said that the lab doing the testing was doing a different kind of test than we originally thought--and this test takes longer. So whereas we thought we'd know by now, it will be two more weeks before we know.

I did have a revelation this afternoon. Waiting on the test results has in many ways hijacked us, as we pray for good news but worry about bad news. My revelation was not to let this wait control us. The worst that can happen (a positive SMA test) isn't life ending. If we have another child like Grace we'll be thrilled, and we'll be experts on raising a child with severe physical disabilities. So Michelle and I have resolved to try to live without spending every waking minute stressing about getting that call.

May 3, 2009

2009-05-03T05:36:00.001-07:00

Sunday morning, and Grace just woke up for the day. Her usual weekend morning routine: drink a little milk and watch a few minutes of cartoons before being ready to tackle a day of play. We're in the waiting period right now on the results of Michelle's amniocentesis. It's supposed to be 7-10 days, but it might be longer now because the lab that's doing the testing called and requested a blood sample from me. Apparently the hospital wasn't made aware that a blood sample was required from the father. So, now we're thinking it might be a few more days than we were originally thinking. We're doing o-kay, because we've prepared ourselves for bad news (while still hoping and praying like crazy for good news).

April 26, 2009

2009-04-26T06:40:00.000-07:00

Sunday morning, and Grace and I are sitting at the kitchen table. She's eating Life cereal, singing songs, and telling me the last names of all her classmates at pre-school. She's better at learning names than I am! Also, Grace is reporting some bad news to me--her imaginary friend Hannah is sick with a broken arm. This probably means a round of Doctor Grace and Nurse Daddy after breakfast.

As if our lives wouldn't be interesting enough with Michelle's upcoming amniocentesis, we sold our house last week (to the very first person who looked at it). So now we're freaking out, because we hadn't started looking for anything. We were under the wrong assumption that it would take awhile to sell our house. Because our current house is a raised ranch, we reached the conclusion over the winter that it wasn't going to be practical for us as Grace continued to grow, as we used her Standing Dani and wheelchair more and more, and as Michelle became more and more pregnant. We're looking for a ranch-style home, which as anybody who's been in the hills of Sioux City knows isn't as common as you'd think here. We're not worried yet, but if we're still looking a few weeks from now, things might get more urgent (we're supposed to be out of here by June 17).

April 20, 2009

2009-04-20T19:19:00.000-07:00

Monday night, and Grace has been in bed for about 45 minutes. Tonight we read the standard two books at bedtime, including one that was about an older sibling adjusting to his new little sister. It was probably wasn't an accident that Michelle checked that one out at the library. We do think that Grace will adjust very well to the baby, although not always being the center of attention will be a challenge for her.

I had sent this in a big email a few days ago, but it bears repeating. Michelle is scheduled to have an amniocentesis on April 28, and we'll find out within 7-10 days after that whether our new baby has SMA. It will be a stressful time, but we're prepared either way. We continue to pray for good news, and we appreciate all of the prayers and thoughts that so many of you have sent. We'll be sure to get word out as soon as we know!

April 5, 2009

2009-04-05T08:01:00.003-07:00

Sunday morning, and Grace and I are sitting at the kitchen table. Grace is stalling during breakfast time, which is not suprising as the stall is one of her favorite mealtime moves. Today her breakfast is cinnamon rolls and bananas, so I don't understand what's taking her so long.

We had Grace's final parent-teacher conference of the preschool year this past week, and Grace received a favorable report. She's learning a lot, she's very receptive to teaching and very eager to learn, and she's doing well socially. We also learned that at times she gets a little too talkative, so I guess we'll try to work on that.

We have decided to sell our house. We love our home, but the fact that it's a raised ranch has become an increasing problem as Grace gets bigger and as we use her equipment more. We're going to take our time selling the house and then look for a more standard raised ranch that will allow Grace to come in on the main floor in her Dani or wheelchair. Part of the issue is that we're concerned with Michelle having to carry Grace up and down our stairs while she's pregnant or after the new baby is born.

On that note, and this probably repeats an earlier post, but Michelle is scheduled to have amnio testing the last week of April. Supposedly we'll know in 7-10 days after the testing whether the new baby has SMA.

April 5, 2009

2009-04-05T08:01:00.001-07:00

March 27, 2009

2009-03-27T06:31:00.001-07:00

Grace and I spent the last couple nights alone together, because Michelle was away at the funeral for the father of an old friend. I realized in those few nights how much I can't do. Tubby night was a big-time adventure, but it paled in comparison to hair time in the morning. Grace was crying big tears yesterday morning when she realized that mom wasn't going to be there to put her in a pony tail. So I made a valiant effort, but by the time we arrived at preschool the pony tail was gone. Thankfully her preschool teacher was willing to help out.

On the baby front, everything is going well. Michelle is definitely feeling better the last couple weeks. We're scheduled to get the amnio test done the last week of April, and it's only supposed to take 7-10 days for us to get the results on whether the baby has SMA or not. Those will be a nervous few weeks, but we're prepared for the news either way.

Grace's names for the baby change daily. For awhile it was Dylan for a boy and Peppermint for a girl, but then it was Josh for a boy and Emily for a girl. Then, on the way to preschool this morning she told me the new baby should be named Pepito, regardless of whether it was a boy or girl. I'm not sure how much of a say she'll have in the final decision, although sadly it will probably be more of a say than I'll have.

March 15, 2009

2009-03-15T07:22:00.001-07:00

Just checked the site for the first time in awhile and noticed the new design, which looks really good. My sister Beth started Race 4 Grace and the website a couple years ago, then last year Michelle's brother Austin began running the website. He does a great job, and hopefully we'll get him some current pictures to get on the site (now that basketball season is over, our lives return to more of a state of normalcy!).

I feel some momentum building for RAGBRAI. My good college buddy Pat is planning on riding a couple days, and that will surely cause others to want to ride. Michelle is definitely planning on being around, although her pregnancy will keep her from riding this year. On that note, we're planning on getting our new baby tested for SMA via amnio testing. If we stay on what we think is the schedule, we should know sometime in May whether our new little one has SMA or not. We are praying every day for a healthy baby, but we're fine with either outcome. If you have any prayer leverage, please pray for our new little one to be SMA-free.

February 28, 2009

2009-02-28T06:44:00.000-08:00

Big news: Grace is going to be a big sister. Michelle is expecting our second child, with the tentative due date in late September. We are really excited, and Grace is over-the-top excited. We were talking the other day about changing our guest bedroom into the baby's room, and Grace said she had decided that the baby would just be moving into her bedroom with her.

There is a 75% chance that this baby will be SMA-free, and a 25% chance that we'll have another child with SMA. We have been well aware of these numbers when trying to decide whether we wanted another child, but in the end we decided it'll be well worth it. We'll rejoice if we we have a healthy baby, and if we have another SMA child, we'll hope and pray that it's another one with Grace's personality. Plus, Grace will be able to teach her little sibling all about driving wheelchairs and other cool things.

February 14, 2009

2009-02-14T06:27:00.001-08:00

Grace had a Valentine's Day party at preschool yesterday, and she was fired up big time for it. She made Valentine's for all her classmates the night before. She's gotten pretty good lately about drawing rather than just scribbling. Currently she can draw flowers, the sun, trees, and people. Her people are pretty hilarious. They're big circles with four lines coming out of them--two arms and two legs. She does make sure to include all the facial features as well.

She had an appointment with her brace maker last week, and he said it was pretty evident that she's grown quite a bit in the last six months. She has to get two new pairs of braces--her full length ones called KAFO's (Knee-Ankle-Foot Orthotics) and her small ones called AFO's (Ankle-Foot Orthotics. She wears her KAFO's to school every day, but on weekends we usually let her wear just her AFO's. Needless to say she's not crazy about wearing her KAFO's, because they're pretty big and unfomfortable. However, they do wonders for her stability in standing, and they keep her knees from buckling in.

February 3, 2009

2009-02-03T06:49:00.001-08:00

As the home page of the website says, the RAGBRAI route has been announced. It starts in Council Bluffs and runs through southern Iowa. A southern start will present some challenges because we have more connections in central and northern Iowa, but the Race 4 Grace team is determined to get things going again this year. At this point our main goal is to come up with some sort of small bus to have as a support vehicle during the ride. In the past we've used a bunch of mini-vans and cars, but we're thinking it would be ideal to have a single large support vehicle.

On a different note, Grace is the "Star Student of the Week" at her school this week, and she's loving that. She had to bring a big poster that told all about her and the things she likes, and other than that, I'm not sure what they do for her at school. She definitely doesn't mind the attention, however.

January 23, 2009

2009-01-23T06:43:00.001-08:00

Yesterday Grace and I were eating breakfast together, and she changed my day. I was in mourning from a loss the night before and hadn't slept much because of the loss. Then Grace asked, "Daddy, do bunnies talk?" Followed up by, "Daddy, will you tell me a spooky Halloween story on the way to preschool today?" I thought to myself, Grace doesn't care if we won or lost the night before, so stop pouting. She's pretty good about that.

Incidentally, the Halloween story is one of her favorites and usually follows a similar plot-line. Either Petey the Puppy and Sammy the Sheep or the Three Little Dollies end up getting chased by a ghost down a dark street until Grace decides that the story has gotten too scary--at which point the ghost turns into a friendly ghost and all the characters live happily ever after.

January 17, 2008

2009-01-17T06:40:00.000-08:00

Not too much new on our end. Grace is getting her fill of Briar Cliff basketball games. Her policy is that she must wear one of her two cheerleader outfits to each game, no exceptions. I brought her into the locker room with me after one of our home wins in December, and now she wants to do it every time. It's fun, she'll go around and give all the guys high fives.

Grace got her new wheelchair delivered yesterday. She's still going to use her Dani as her primary means of mobility, but it'll be nice to have the wheelchair at home when the Dani is at school.

January 3, 2008

2009-01-03T07:11:00.000-08:00

Saturday morning, and Grace and I are hanging out at the kitchen table. She's eating breakfast, which this morning is peanut butter and jelly toast and bananas. She's already said that after breakfast she's going to play some computer games. She got a couple different computer-type games for Christmas, and she also likes playing games on our laptop. She's gotten pretty good at running a mouse, and it's fun to watch her learn how to play the games.

We're still trying to figure out where to put all of Grace's Christmas presents--Santa and family were very good to her this year. To summarize, she received baby stuff, barbie stuff, polly pockets stuff, princess stuff, games and puzzles, a fancy purple princess dress, and other clothes. The amount of pink and purple around the house continues to grow. Maybe this summer we'll go ahead and paint the house pink to match everything else.

December 24, 2008

2008-12-24T09:27:00.000-08:00

Merry Christmas to everybody! It's Christmas Eve day, and we're at home. We spent last weekend at my parents still unsold house in Clear Lake for our family Christmas. Grace had a great time playing with her cousins Logan, Emmalin, and JJ. She talks about her cousins ALL THE TIME, and she made the most of the couple days she got to spend with them. Tonight we're heading to Marcus to spend Christmas Eve with my Grandpa and Grandma Bird, and tomorrow we'll have Christmas dinner with my Grandpa and Grandma Nelson and other Nelson relatives. In betwee, of course, we'll make plenty of time for Santa's arrival at our house. Grace has recently veered off her typical Barbie and Polly Pocket course and become engrossed in playing with babies. Thus, we anticipate that Santa will arrive with numerous baby-related gifts. Then, later tomorrow we'll head for Carroll to spend a couple days with Michelle's family. All in all it will have been a great Christmas week.

December 7, 2008

2008-12-07T18:43:00.000-08:00

We took Grace to see Santa Claus today, and that went really well. She wasn't as shy as we thought she'd be, and she managed to tell Santa what she wanted for Christmas. She told him she wants a purple dress and a doll house. What was most funny was that afterward she told us she wanted to tell Santa that she wants the "Baby Alive" doll that goes "poop and pee," but she didn't want to say the words "poop and pee" to Santa. It was a pretty funny moment.

Also, we got word late last week that her power wheelchair is almost ready. We started the process of getting one back in early August, and we knew going in it would be a long process. It'll be nice to have the chair, which we'll probably have her use to get around the house. She'll continue to use her Standing Dani at school, because that's worked really well and she uses it a lot more at school than she'll use her wheelchair at home.

Sunday, November 30, 2008

2008-11-30T07:44:00.001-08:00

It's Sunday morning, and Grace and I are sitting here together eating waffles. As usual, it's taking Grace a long time to finish her breakfast. Right now she's busy talking about the Mickey Mouse characters on her plate and counting (she's pretty proud that she's learned to count to 100). She's also currently wearing a cheerleader outfit over her jammies, something that's a pretty regular occurence on weekends around here.

We had an abbreviated Thanksgiving weekend, because Grace got sick on Thursday. On Friday we found out she had Strep Throat, so we came home early from our travels. The good news is she's doing a lot better today, and we won't be surprised if she's able to go to school tomorrow.

November 23, 2008

2008-11-23T19:24:00.000-08:00

We've finally compiled our list of those who participated in Race 4 Grace 2008, either by riding during RAGBRAI or by contributing money to the team and FSMA. We hope to put this list on the website soon (www.race4grace.org). Our goal is to double the list in 2009, and we'd love to get as many as possible to ride in RAGBRAI 2009.

Grace is doing well. She continues to love preschool; she's learning to write letters and numbers, she can do some sign language, and she can sing a ton of songs.

Also, her wish list for Santa is already multiple pages.

November 8, 2008

2008-11-09T15:07:00.000-08:00

Grace was all over the place this past week, because the Sioux City schools were having conferences. She got to go to Kathy's for a day (her previous daycare provider), and she also got to spend some quality time with her Grandma Colleen. She's pretty flexible, but she's also gotten to the point where she misses school if she has too long of a break from it. She must've learned about the election at preschool, because this past week she's been singing the name Barack Obama at home--pretty funny. She told me today that she was frustrated because I wasn't listening to her because I was watching basketball (game film). Funny to hear her say the word frustrated.

I just learned this past week about the guestbook on the Race 4 Grace website--thanks to those who've signed in and posted a message. Pretty cool. We always encourage you to go to www.race4grace.org for current pictures (Halloween pics were just added) and for next year's RAGBRAI info. Locations for next year's event will be released sometime in January or February. We're already looking forward to it!

November 2, 2008

2008-11-02T07:55:00.000-08:00

Grace and her mommy had a good Halloween this year, while daddy was on the road with his basketball team. Grace was an angel this year, and she was beautiful in her costume. She had initially resisted any attempt to make her wear anything other than a queen costume, but her mom did a good sell job over the past week. They had a great night for trick-or-treating and made quite a few rounds. We'll get pictures on the website as soon as we can figure out how.

I've decided over the past few weeks that Grace is the most popular girl in her class at preschool. Every morning when we get there all the kids say hi to her and ask her to play with them. I think they've really accepted her and have taken to helping her out with certain needs, such as getting toys and things for her when she's not in her Dani. That makes us feel really good, and we hope that she'll continue to do well socially as she gets older.

October 25, 2008

2008-10-25T06:17:00.000-07:00

Grace had Strep Throat this past week and stayed home from preschool for three days. She wasn't actually that sick, but she had a pretty nasty cough. She went back to preschool Thursday and Friday, and she travelled with her mom this weekend.

She's really, really looking forward to Halloween. She's wanted to be a princess since last Halloween, so I'd imagine that's what Michelle has planned for her. Hopefully it'll be nice enough for her to take her Dani trick-or-treating, but we'll see.

October 12, 2008

2008-10-12T13:15:00.000-07:00

Grace continues to do very well in school. I got to pick her up this last week because we had morning practice, and it was great to see her out at recess with all the other kids. While she's obviously limited in terms of using playground equipment, her Dani lets her be pretty much as mobile as the other kids. She's very social, and all the kids would run over and say bye to her when we left. Her teacher told us last week that she was the first kid in the class to know everybody else's name and to call the principal by name.

On a sadder note, she's been asking a lot lately again about when she'll be able to crawl and walk. For some reason she's been trying to crawl at home the past week, and it's hard for us to see her struggling. We always try to stress to her the things she can do, and we also have to remember that she's much better off than many, many SMA kids. We pray that Grace will come to understand and thrive with her condition, but we also pray for the Type I kids who don't get to be as healthy as Grace.

October 4

2008-10-04T07:45:00.001-07:00

Another good week at school for Grace, she managed to stay in green the whole week. We continue to love hearing the stories she tells about school. One thing that school is doing is limiting her polly pocket and barbie time. So this morning (Saturday), she woke up early and wanted to play with her barbies right away. I think she sensed it was the weekend and knew she needed to maximize her weekend time to get as much dolly time as possible.

She had a nagging cough for about a week, but it's gone away the last couple days. She still has a strong cough, which is a great thing for SMA kids. We hope that her daily Cough Assist treatments will help her maintain her strong cough.

September 28

2008-09-28T06:24:00.001-07:00

Grace had a good week at school. Her teacher has instituted a stoplight system to work on the student's behavior. If they're in green at the end of the day, it means they listened to the teacher and followed directions. If they're in yellow, it means they had to be warned a few times. And if they're in red, it means they don't get to go out to recess the next day. Grace told us when the system first started that she was in yellow a few times (she does like to talk). But this past week she was in green all five days, and she got a reward at the end of the week. She was pretty proud of herself.

She's still doing her water therapy and loving that. We haven't been doing the horse riding this fall, partially because we wanted to see how preschool went and were worried about over doing it. She has continued to get more comfortable with her leg braces, and she's wearing them for most of the school day now.

Weekend

2008-09-22T06:56:00.000-07:00

We had a busy weekend, travelling to Des Moines and Pella. We all participated in the Beaverdash in Des Moines on Saturday morning, and that was a good time. Grace and four other kids from around Iowa who have SMA and are in power equipment got to have their own race after the 5K was over. Grace didn't win, but she got a blue ribbon anyway. What was best was Grace and the other kids chasing each other around after the event was over. We've said again and again that Grace is a different kid when she's in her Dani because of the freedom of movement and independence it gives her. We spent the rest of the weekend in Pella and got to see old friends. Grace even got to go to Cornie's (her first daycare provider) and see some old friends.

School Adventures

2008-09-12T07:47:00.000-07:00

Grace had some adventures at school this week. Yesterday she somehow poked herself in the eye and scratched it, so she's home from preschool today resting. She wasn't able to open her eyes this morning, so we took her in to the doctor. Nothing big, she just needs a day in the dark to rest her eyes. Two days ago she somehow got her Dani stuck between playground equipment, and one of the custodians had to help her out. And on Tuesday a new classmate turned the speed up on her Dani to full speed, and when Grace tried to drive it she took off and knocked over a shelf. The teachers went over Grace's condition and her equipment with the kids on the first day of school, but this was a new girl who apparently didn't know any better. Despite the missteps, Grace is still really liking going to preschool every day. When I bring her in the mornings all the kids come over and say hi to her. Our opinion is that she's the most popular girl in school.

Beaverdash

2008-09-07T09:03:00.000-07:00

We'll be heading to Des Moines the weekend of September 20, which is the date for the Beaverdash. It's an annual 5K race that is the Iowa Chapter of FSMA's largest fundraiser. I think all three of us are going to do it, and we have friends and family joining us. We're really excited to see other families with SMA kids who we've gotten to know over the past year and a half. If you're interested, we put a link to the event on the front of the website.

Grace continues to make us laugh a few times a day with new phrases she picks up. Her new one of the week is "Oh, that's disgusting" --what's most funny is that she doesn't always use her phrases in the right context.

Also, we met with two wheelchair vendors this week to start the process of getting her a power wheelchair. We'll still use her Dani as her primary way of getting around, but right now we're keeping that at school Monday through Friday. So at first the wheelchair will be something we'll have at home during the week.