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.
Wednesday, December 23, 2009
Friday, December 11, 2009
December 11, 2009
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.
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.
Sunday, November 29, 2009
November 29, 2009
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.
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.
Sunday, November 15, 2009
November 15, 2009
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!
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!
Wednesday, November 4, 2009
November 4, 2009
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.
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.
Sunday, October 18, 2009
October 18, 2009
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.
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.
Saturday, October 10, 2009
October 10, 2009
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.
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.
Tuesday, September 29, 2009
September 29, 2009
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.
Tuesday, September 22, 2009
September 22, 2009
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!
Thursday, September 10, 2009
September 10, 2009
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.
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.
Monday, August 31, 2009
August 31, 2009
Two weeks into preschool, and Grace is loving it. Three weeks into the valproic acid, and so far no side effects that we've noticed. She'll get her blood drawn next week and we'll know more then.
Grace had a pretty busy weekend. We had some friends and their kids over Friday night, then Saturday she got her hair cut and went to a football tailgate. We laid pretty low yesterday (Sunday), which Grace and I plenty of time to play school. That's one of her favorite things to do. Yesterday I got to be the teacher and she was the student--often times it's the other way around.
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.
Saturday, August 22, 2009
August 22, 2009
So far so good two weeks in to Grace's VPA experiment. We haven't seen any side effects, and she's taking the medicine with her food just fine. This next week we up her dose half of the full dose.
This morning Grace is planning a play. Right now she's huge into thinking up plays and then acting them out. Pretty soon we have a dress rehearsal coming up, because as Grace just told me, "you need to practice if you're gonna have a good play." She's also huge into dress up right now, and thankfully she has enough princess dresses that we can accommodate her demands.
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.
Monday, August 17, 2009
August 17, 2009
Grace starts her second year of preschool today! She's eating her breakfast as we speak and can hardly contain her excitement. We're grateful that's she's such a social kid--she's not one bit scared or shy about going back. She'll be in the same classroom as last year with the same teachers and aide, so that's a comfort to us. What a difference a year makes, because we were really apprehensive last year with her starting her first year.
She's been on valproic acid for a week now, and nothing to report. We're only giving her a quarter dose right now, and next week we'll up it to a half dose. She takes it with yogurt, and so far it hasn't been a problem to get her to eat the yogurt. We just open up the capsules and poor the sprinkles in the food.
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.
Sunday, August 9, 2009
August 9, 2009
Today we're starting Grace on valproic acid and carnitine, and we're looking forward to seeing what happens. Best case scenario, Grace feels a little stronger or at least stops regressing. Worse case scenario, she has some side effects and we stop the treatments. We'll monitor Grace closely and see what happens.
We spent a couple days this past weekend in Okoboji and spent much of our time doing what Grace loves most--swimming. We also took her on a boat ride around the lake, and she loved that as well. Pretty much anything on the water--she's gonna love it.
We'll try to get some Race 4 Grace updates and pictures on the website soon.
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.
Thursday, July 23, 2009
July 23, 2009
Big week. The Race 4 Grace RAGBRAI team had a blast this past week. We camped in Council Bluffs on Saturday, rode to Red Oak on Sunday, rode to Greenfield on Monday, and the last of us headed hom on Tuesday morning. We survived two bike breakdowns, a flat tire on a support vehicle, and rain on Monday. We fielded many, many questions about SMA and Race 4 Grace over the course of the few days, and that will continue to be one of the ways we try to raise awareness. We're continuing to accept donations to this year's Race 4 Grace effort, and the support so far has been awesome.
We are also moving into our new home in Sioux City. It's been a hectic summer, and it'll be nice to finally get settled in. Being in a ranch home will be a HUGE plus for Grace and her equipment, and we're happy we made the decision to move this summer.
We are also moving into our new home in Sioux City. It's been a hectic summer, and it'll be nice to finally get settled in. Being in a ranch home will be a HUGE plus for Grace and her equipment, and we're happy we made the decision to move this summer.
Thursday, July 16, 2009
July 16, 2009
We'd made a decision to try something for Grace. Those of you who have SMA children know about valproic acid and carnitine, but those of you don't probably don't. Valproic acid and carnitine are currently being used in clinical trials to determine their efficacy in strengthening individuals with SMA. At this point there isn't clinical proof to show that they work, but there is some anecdotal evidence from families who've tried it with their child. We've seen a regression in Grace's ability to stand for a set amount of time over the last few months, so we decided to try valproic acid and carnitine. We really made the decision after the FSMA Conference in Cincinnati after talking to families and researchers about it. There are potential side effects, and we've decided that we're going to try it until we see any adverse effect, at which point we'd stop right away. Grace will be getting a prescription from her doctor in Iowa City, and we hope to start in the next few weeks. We'll keep you posted.
Friday, July 10, 2009
July 10, 2009
Friday morning, just eight days away from the start of RAGBRAI and Race 4 Grace 2009. We sent out flyers a couple weeks ago, and we've already received a large number of responses and generous donations to the charity. If you're reading this and somehow didn't get a flyer, check out the home page of the website or email Michelle or me.
The plan for the team this year is to meet up in Council Bluffs/Omaha on Saturday the 18th. We are riding the first two days, which go from Council Bluffs to Red Oak and Red Oak to Greenfield. I'm excited that we have some riders who haven't been on RAGBRAI before, and as always it'll be a great time. We also got hot pink Race 4 Grace shirts this year, so we'll be sure to stand out on the journey.
Grace's summer continues to be busy. We added a second session of physical therapy just for the rest of the summer. We went to a big pool last Sunday that let little kids ride with their parents on their big water slide. Since Grace is an adrenaline junky, she loved it--we went down that slide more times than I can count. Grace also went to Saturday in the Park with us last Saturday. Saturday in the Park is a huge outdoor music festival held every year in Sioux City, and this year the Counting Crows were the headline band. We were very proud of Grace as she navigated her Dani through the 25,000 people without any problems. And she somehow managed to stay awake long enough for the fireworks at 10:30. Probably a new record for her.
The plan for the team this year is to meet up in Council Bluffs/Omaha on Saturday the 18th. We are riding the first two days, which go from Council Bluffs to Red Oak and Red Oak to Greenfield. I'm excited that we have some riders who haven't been on RAGBRAI before, and as always it'll be a great time. We also got hot pink Race 4 Grace shirts this year, so we'll be sure to stand out on the journey.
Grace's summer continues to be busy. We added a second session of physical therapy just for the rest of the summer. We went to a big pool last Sunday that let little kids ride with their parents on their big water slide. Since Grace is an adrenaline junky, she loved it--we went down that slide more times than I can count. Grace also went to Saturday in the Park with us last Saturday. Saturday in the Park is a huge outdoor music festival held every year in Sioux City, and this year the Counting Crows were the headline band. We were very proud of Grace as she navigated her Dani through the 25,000 people without any problems. And she somehow managed to stay awake long enough for the fireworks at 10:30. Probably a new record for her.
Saturday, July 4, 2009
July 4, 2009
Happy 4th of July to everybody. We're going to go to a parade in downtown LeMars this morning, then head to Saturday in the Park in Sioux City later today. Saturday in a Park is a big, outdoor annual music festival in Sioux City, and this year the headline band is the Counting Crows. They have some things for kids to do, so hopefully Grace will have fun. Then we'll finish the night by watching fireworks (hopefully Grace will still be up).
In the last post I mentioned that we were thinking about doing some things differently with Grace in terms of nutrition. Clinical trials are currently underway with SMA kids involving valproic acid and carnitine, and we're thinking about having Grace take these. The trials aren't finished yet, so there is no proof that they work or help strengthen kids with SMA, and there definitely are some potential side effects to the valproic acid. However, we talked to a number of families at the national FSMA conference a few weeks ago who had their child on it and reported pretty positive results. The main thing is we don't want to sit idly by when maybe there is something that can help Grace. We're still debating it, and it'll be a process of probably having to go to Iowa City to get her started. We'll see.
In the last post I mentioned that we were thinking about doing some things differently with Grace in terms of nutrition. Clinical trials are currently underway with SMA kids involving valproic acid and carnitine, and we're thinking about having Grace take these. The trials aren't finished yet, so there is no proof that they work or help strengthen kids with SMA, and there definitely are some potential side effects to the valproic acid. However, we talked to a number of families at the national FSMA conference a few weeks ago who had their child on it and reported pretty positive results. The main thing is we don't want to sit idly by when maybe there is something that can help Grace. We're still debating it, and it'll be a process of probably having to go to Iowa City to get her started. We'll see.
Friday, June 26, 2009
June 26, 2009
The past few weeks have been a whirlwind, which is going to be my excuse for not posting for awhile. In chronoligical order, our first big event was moving out of our house. We were sad to sell it and move out, but it was becoming more apparent as Grace gets bigger and as she uses her power wheelchair and Standing Dani more that we needed to move into a regular ranch-style home. The only negative of the whole deal is that we can't move into our new house until late July, so for now we're stuck in limbo living with my parents in LeMars. It hasn't actually been too bad, and for Grace it's been like an extended five weeks vacation at Grandpa and Grandma's.
Last week we spent four days in Cincinnati at the FSMA national conference, and for so many reasons it was a tremendous trip. Grace got to see and play with a lot of kids like her in wheelchairs--which she never gets to see at her school. We think that's a great benefit for her. For us it was great to network with families, go to the workshops, meet new people, and learn a lot more about some of the things we can do for Grace. It's always tough to think about what the future might hold for Grace, but we usually fight off our periodic bouts of worry and sadness with optimism for what the future holds.
We're thinking about a number of things we might start doing for Grace in terms of nutrition, medicine, equipment, therapy, and I think I'll touch on those in the next few weeks.
Finally, RAGBRAI and our annual Race 4 Grace fundraiser is less than a month away. We've already started mailing and emailing the donation form for this year, and if you want one, you can download it on the home page of the website. Basically you have two ways to participate in Race 4 Grace--ride with our team in RAGBRAI or send in a donation--we appreciate any kind of participation! More to come.
Last week we spent four days in Cincinnati at the FSMA national conference, and for so many reasons it was a tremendous trip. Grace got to see and play with a lot of kids like her in wheelchairs--which she never gets to see at her school. We think that's a great benefit for her. For us it was great to network with families, go to the workshops, meet new people, and learn a lot more about some of the things we can do for Grace. It's always tough to think about what the future might hold for Grace, but we usually fight off our periodic bouts of worry and sadness with optimism for what the future holds.
We're thinking about a number of things we might start doing for Grace in terms of nutrition, medicine, equipment, therapy, and I think I'll touch on those in the next few weeks.
Finally, RAGBRAI and our annual Race 4 Grace fundraiser is less than a month away. We've already started mailing and emailing the donation form for this year, and if you want one, you can download it on the home page of the website. Basically you have two ways to participate in Race 4 Grace--ride with our team in RAGBRAI or send in a donation--we appreciate any kind of participation! More to come.
Friday, June 5, 2009
June 5, 2009
Busy times at our house. We're packing and getting ready to move next week--the result of selling our home a lot quicker than we anticipated. Grace seems to have accummulated an unbelievable amount of dolls of all types, and her mom has avoided packing her room to this point.
We're doing some preliminary work for the Race 4 Grace 2009 campaign. We're going to put together a sheet to email and handout as a way of collecting donations. Everything we raise this year we're going to give to the Iowa chapter of FSMA. Our plan this year is to send a Race 4 Grace T-shirt to anyone who donates $25 or more. Anyone who's seen the T-shirts knows they're pretyt sweet. We're also in midst of recruiting riders for the RAGBRAI portion of Race 4 Grace--I'm excited that we have some newbies this year.
We're doing some preliminary work for the Race 4 Grace 2009 campaign. We're going to put together a sheet to email and handout as a way of collecting donations. Everything we raise this year we're going to give to the Iowa chapter of FSMA. Our plan this year is to send a Race 4 Grace T-shirt to anyone who donates $25 or more. Anyone who's seen the T-shirts knows they're pretyt sweet. We're also in midst of recruiting riders for the RAGBRAI portion of Race 4 Grace--I'm excited that we have some newbies this year.
Wednesday, May 27, 2009
May 27, 2009
Our prayers were answered yesterday. We received news that the test results on our new baby were what we'd hoped--our baby will be SMA free. We are so happy and thankful, and we appreciate everybody's thoughts and prayers over the past month. It was a long four weeks of waiting, but that's over now!
Sunday, May 24, 2009
May 24, 2009
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!
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!
Monday, May 11, 2009
May 11, 2009
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.
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.
Sunday, May 3, 2009
May 3, 2009
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).
Sunday, April 26, 2009
April 26, 2009
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).
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).
Monday, April 20, 2009
April 20, 2009
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!
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!
Sunday, April 5, 2009
April 5, 2009
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.
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.
Friday, March 27, 2009
March 27, 2009
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.
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.
Sunday, March 15, 2009
March 15, 2009
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.
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.
Saturday, February 28, 2009
February 28, 2009
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.
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.
Saturday, February 14, 2009
February 14, 2009
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.
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.
Tuesday, February 3, 2009
February 3, 2009
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.
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.
Friday, January 23, 2009
January 23, 2009
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.
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.
Saturday, January 17, 2009
January 17, 2008
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.
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.
Saturday, January 3, 2009
January 3, 2008
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.
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.
Subscribe to:
Posts (Atom)