December 24, 2008

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

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

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

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

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

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

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

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

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

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

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

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

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.

Preschool

Grace is really getting the hang of preschool. She's starting to talk more about her friends from school, and I think her teachers are getting more and more comfortable with her needs.

She's really going through a "fantasy" or "story" phase right now. She constantly wants you to tell her stories or tell you stories. Most stories involve dollies coming to life, freindly monsters, etc. She has a pretty good imagination, and we hope she continues to develop her love of books.

School and Stuff

Grace is seven days into preschool, and she officially loves it. She was very hesitant the first couple days, and we don't blame her. Her new school is a lot bigger and busier than she's used to. But she's adjusted, and we think she'll thrive. She takes her Dani down the halls, out to recess, and everywhere else in school--so she has more independence now than she ever has. Her teacher is really good about dealing with special needs kids, which is why we picked the preschool that we did.

Also, we've had a Cough Assist machine now for about a month, and that's going well. It's basically a machine that helps strengthen the lungs and chest wall, and we use it with Grace once or twice a day for about 5 minutes at a pop. It's nice to have when they're healthy, but it's really geared for use during times when they're sick. The nice thing is that she's used to it, so if she does get sick and require more and longer use, it won't be anything new.

The First Day

Grace enjoyed her first day of preschool. It was pretty scary bringing her, but she was very brave. The setup of the school is going to be very good for her, and she can get pretty much anywhere in her Dani. The teachers took some time at the start of the day to explain to her class about being careful around her and about her Dani. She made some friends already on the first day, so we're encouraged.

Also, we're working on compliling a list of those who participated in Race 4 Grace this year, either through riding RAGBRAI or donating money. The list will be big, which is awesome. And I hope even more will keep the second-to-last weekend in July open next summer for the 3rd edition of Race 4 Grace.

Preschool

We've been having some trouble with the log-in and password for this blog, and that's the reason for the long lay-off in posts. Don't have much time to write this morning, but I did want to mention that today (8/21) is Grace's first day of preschool. Mom and dad are scared, but she's excited. More to come on how it goes, and more also to come on RAGBRAI now that I can blog again.

RAGBRAI

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

Iowa City Trip

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

RAGBRAI getting closer

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

Summer Is Here

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

Interesting Weekend

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

Birthday

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

Posts

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

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

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

This weekend

We spent this weekend in Pella, and it was great to see a lot of our closest friends from our three years there. The highlight of the weekend was spending a couple hours with the Turnbulls, a family we got to know just a few months before we moved away. They also have a daughter with SMA, but she has Type I, a much more severe form of SMA than Grace's Type II. Michelle and I are amazed at how strong the parents are and how much they've done for their little girl. Their little girl is a very pretty little fighter, and she is so lucky to have the parents she does. If you have any prayers to spare this week, we'd love it if you'd say a little one for all families dealing with SMA, and put in a special word for the Pella Turnbulls.

RAGBRAI

If you've been on the website recently, you've seen that Beth (my sister) has started plans for the week of RAGBRAI. The plan is that the money we raise this year will all go directly to the Families of Spinal Muscular Atrophy, which is the main national organization for promoting the search for a cure for SMA. We're hoping to get as many people as possible to ride for a day, and if you can't ride, we hope you'll consider sponsoring one of the riders or contributing in some other way. I'm planning on riding one day, and I'm still working on getting Michelle to ride. We haven't decided yet if we're going to do Day 1, which is on a Sunday and goes from Missouri Valley to Harlan, or the day that goes from Ames to Tama in central Iowa. If you're thinking about riding for a day, let us know. If you're reading this and have never experienced RAGBRAI, I'd really encourage you to think about doing it. It's a blast, and if you're part of the RACE 4 GRACE team we think you'll be part of a great cause.

Mini-van

Well, we bought a mini-van. Now we'll be able to haul Grace's Standing Dani around, which will be a good thing. We also got a loaner ramp this week, and eventually we'll purchase one. The ramp we have is one that folds out, so it's pretty convenient for travel. We're definitely excited to be able to take Grace to places such as the mall and let her cruise around in her Dani. She's pretty much been confined to our home, with a couple exceptions when Grandpa and Grandma were around with their van--and we think she'll love some open spaces.

Spring

Grace and her parents looking forward to spring finally getting here. It's been a long, long winter. The next item on our to-do list is to buy a mini-van and get a vehicle ramp to allow us to haul Grace's Dani around. Hopefully we'll get this accomplished in the next couple weeks.

Grace had a really good therapy appointment this past week. Her therapist was saying over the last couple months that she seemed a little weaker, but this past week she did really well. She cruised by herself to get things, and she's been doing that at home as well. We're trying to keep her standing (either at the end table in our living room or in her Dani) as much as possible.

We're planning on Grace riding horses again this spring, and she's still going to her swimming once a week. She's missed the last few weeks of her music class, mostly because her mom was taking her to her daddy's basketball games on those same nights. Now that hoops season is over, she should be able to get to that on a more regular basis--which is a good thing, becuase she loves that class.

Updates

We had a big meeting with Grace's AEA therapists this past week to discuss how things will change when she turns 3 in May. At that point she'll move into a different level of coverage from the AEA. Among the options we're considering are having her go either half-days or full-days to a preschool next year.

Grace had a great Valentine's Day. She made Valentine's for all her friends at her daycare, and she brought home a lot of candy. Her daddy got her some Dora books and when I told her we would read a couple before bedtime that night, she responded by saying, "Daddy, that's a great idea."

Also, Michelle has taught Grace to do the "Macarena", and she's pretty good at it.

Grace and Basketball

Grace likes going to Briar Cliff's basketball games, but unfortunately, she's not really into the basketball. She is, however, into the dancers and cheerleaders. And playing her dollies in the bleachers. And driving her Standing Dani around the second level balcony.

The next session of her "Taps" class starts next week, and she'll be excited about that. Taps is a once-a-week hour long music class, and Grace really likes it.

The RAGBRAI route was announced recently, and we'll talk with Beth about plans for that and our goal to raise some money for SMA research.

Good Week

Grace had a good week this past week. She's getting better and better at driving her Dani. She met with both her AEA therapists and her water therapist. We're looking into vehicle ramps and options to make our home more accommodating to her new equipment. We want her to be able to access as many of her toys from her Dani as possible, so we're looking at shelve and table options.

Getting Acquainted

Grace is getting used to navigating her Standing Dani around our house. Her favorite games are "Hide the Horsies" or "Hide the Seashells". To play this game, you hide her horsies or her seashells around the house, and she drives her Dani around to find them. She loves it, and it's been a good way for her to work at her driving ability. Our doors, walls, and furniture will have a lot of scratches and marks on them, but it'll be worth it. Otherwise things are back to normal for Grace after the Christmas season. She resumed her water therapy last week, and our family's next project is to get a van and ramp to allow us to haul the Dani around.