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.
Saturday, July 4, 2009
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).
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