Friday, November 30, 2012
Thursday, November 29, 2012
So I Missed October
And now I have almost missed November. I can't believe Christmas is just around the corner. I am just going to do a quick little blurb about what has happened since I last blogged so I don't get too far behind.
Right before we left for Chicago the second time we brought home Molly, our Goldendoodle. I have been trying to convince Joel for years for a puppy, and as he says he "finally didn't say no". We had to make a deal that I would be responsible for all the dog poo clean up, but it really hasn't been that bad especially when I see the boys with her, it is totally worth it. Tyson is just in love and she totally tolerates Charlie laying on her, tackling her, brushing her, whatever he decides to do to torture her. She is a very smart dog and has fit in quite nicely with our family. She sleeps with Tyson most nights and cries every morning when we leave him at school.
Right before we left for Chicago the second time we brought home Molly, our Goldendoodle. I have been trying to convince Joel for years for a puppy, and as he says he "finally didn't say no". We had to make a deal that I would be responsible for all the dog poo clean up, but it really hasn't been that bad especially when I see the boys with her, it is totally worth it. Tyson is just in love and she totally tolerates Charlie laying on her, tackling her, brushing her, whatever he decides to do to torture her. She is a very smart dog and has fit in quite nicely with our family. She sleeps with Tyson most nights and cries every morning when we leave him at school.
She even graduated Puppy 1 class!
OK, enough adorable dog pictures, I don't want you all to start calling me the crazy dog lady. But as you can see she is well loved!
Then football season started. The boys absolutely love going to the K-State games! We tailgate for 5 hours before and then go to the game and they are still not ready to go home when it is over. It also helps that they have won all but one game this year. It has been quite an exciting year.
The best part of this football season was watching Tyson play flag football. He had two college boys for his coaches and they were wonderful with him. They let him kick on every punt and kick off. He had a blast. Then the second to last game of the season, it was decided by both teams that Tyson was going to score a touchdown. Joel and I had no clue that it was going to happen so I have a horrible video on my phone, but it was seriously THE cutest, sweetest thing I have ever seen. The kids on the other team faked going for his flag and everything. He was soooo excited! The only way to top that is during the last game they let him score the WINNING touchdown! Our team had not won all year and we were playing one of our friends teams. There was seriously one play left and they let Tyson run it in for a touchdown. Our coach was so excited for him that he ran the sideline with him. Tyson knew he had won the game and still talks about it like it was yesterday. What a lesson for everyone. Such a proud moment for us and an experience that he will never forget.
I can't get the video to load, I will try again tomorrow. But here are a couple pictures of him playing.
I think that might be good for now. I am afraid this is getting too long and you are all bored, so I will finish with another one tomorrow. Thanks for reading this so far!
Friday, September 21, 2012
Chicago-The Picture Version
We tried really hard to make these trips as fun as we could with just a few doctor visits in the middle. Tyson was spoiled rotten and got new things to work for every step of the way. I think we did a pretty good job because he is still asking to go back to Chicago. I would take that as a sign he did not associate it with the doctor visits. When we weren't at the hospital we were out enjoying the awesome city.
Top of the Willis (Sears) Tower
Tour of Wrigley Field. Charlie swore at any minute he was going to see Wrigley, Lisa's dog there. Everytime the tour guide said Wrigley, he would say, "come here Wrigley!" Pretty cute!
Chicago Cubs game! Even with a 4 hour rain delay, they loved the game! It worked out ok because Lisa, Ryan, Braydon, Kellan, Ryan's sister, and Ryan's mom all got to go too!
This is how he spent most of his days at the doctor. Thank God for technology!
The second visit was just me and him. A little less touristy but we still kept busy. Him and his new GIANT Clumbsy!
We hit another game while we were there the second time too. As you can see he was a little excited so we were a little bit early. (just 2 hours!)
It really was a great little vacation for us. We got to see some great college friends of mine, Lisa and her family, my sister Jenni was there for a conference at the same time, and Joel's cousin Teresa. I missed the little man like crazy during the second visit, but he had a blast in Iowa with family too. Thank you all who helped us make this happen. We could not have done it without our amazing family and friends!
Chicago-The Wordy Version
In April, Joel and I went to an amazing conference in Kansas City to learn all about Fragile X Syndrome. We had no idea what to expect since this was all very new to us. I can't speak for Joel as much, but I was deep down thinking that we would be sitting through a big reality check. I was expecting the worst I guess. We pulled into the parking lot and literally there were about 10 cars. We were shocked to find such a small amount of people especially at a conference in Kansas City! It really made us realize that the number of kids diagnosed with Fragile X Syndrome is so small. Well, the conference was NOTHING like a pity party, it was the exact opposite. The speakers were all amazing and we learned so much. Most importantly we learned that the research in the field is booming. There are many drug trials going on as we speak and they are so close to finding a medicine that might change the lives of people with Fragile X. It was so encouraging! After hearing Dr. Berry-Kravis speak about all the research (which a lot was way over our heads) we decided that Tyson might be the perfect canidate to get into one of these trials. We feel strongly that if our little man can do this, he would be changing the lives of so many. What an amazing thing right? So that leads me to Chicago!
We signed Tyson up for a clinical trial that was being done in Chicago. Joel and I both thought that Tyson would be able to do it and we knew that most kids with Fragile X Syndrome would not be able to. So Tyson would do it for all the kids who can't (still gives me goosebumps). We also knew that would mean we would spend a lot of time this summer there, but we were willing to try. It really is a great place to be "stuck" for a few weeks. We knew it was not going to be easy for him, but we were prepared to make him feel like a superhero, Spiderman to be exact. And that he did. He referred to himself as Spiderman the whole time we were there. He sat there like a champ while they drew blood, put IV's in, ran tests, and asked him and us a ton of questions. He really was a superhero!
So here is how it went. Our first visit was kind of the pre-screening for the second visit. He had to get some blood drawn and a few tests to see what everything was before he took any of the medicine. One day he took the medicine and an IV was put in so that they could draw blood multiple times without having to be poked multiple times. This was to determine how much of the medicine he would recieve in the second part of the study. He had no problems with the medicine or the blood draws. He really was awesome! The hardest part for him was keeping his hand straight. Then the last day was one more blood draw and a couple other quick tests and we were on our way.
The second visit he actually took the medicine for 7 days. He had a couple predose blood draws and a couple tests like the first time, but once he started the medicine we were really on our own until the last couple days. The second to the last day was another all day blood draw day so he had to get the IV again. It didn't go as well this time, only because they couldn't find the veins as well so we ended up in the arm which was a little more difficult to keep his arm straight. But he was still awesome! The last day was one more quick blood draw, a couple tests and we were on our way. He seriously could not have been a better patient!
If you are still reading you are an awesome person!
They had told us not to expect any changes in them while they were on the medicine because 7 days is really not long enough to be on it to make a difference. Well, it made changes. He was so calm and relaxed. His speech was slow (in a good way) and clear. Here are a few quick stories. I wanted to go downstairs and get a pop one morning. I said, "Tyson let's go get a pop." He said, "Mom, I can't go downstairs in my pajamas. That's silly!" Me, "well you're right Tyson, here are some clothes." Tyson, "Thanks Mom, I appreciate that!" Seriously about fell on the floor. One night while eating dinner at the Rainforest Cafe (talk about sensory overload!) he spilled his Sprite on his brand new Bulls jersey. My kids ALWAYS freak out when they spill. I was ready to pack up and leave because I knew what was coming. Instead, he reached over the table, got a napkin, wiped it off, and said "that's better!" And went on with his dinner. Holy ****!!
So kind of bittersweet. Now I know this medicine is out there and can't get it until it gets to the next stage of research. I was told at the latest it would be the end of 2013. I have to keep it in perspective though, I just found out the boys have Fragile X Syndrome in March, it's only September...
I promise in the next post I will put lots of pictures of all the fun stuff we did while we were there. Thank you for reading! :)
We signed Tyson up for a clinical trial that was being done in Chicago. Joel and I both thought that Tyson would be able to do it and we knew that most kids with Fragile X Syndrome would not be able to. So Tyson would do it for all the kids who can't (still gives me goosebumps). We also knew that would mean we would spend a lot of time this summer there, but we were willing to try. It really is a great place to be "stuck" for a few weeks. We knew it was not going to be easy for him, but we were prepared to make him feel like a superhero, Spiderman to be exact. And that he did. He referred to himself as Spiderman the whole time we were there. He sat there like a champ while they drew blood, put IV's in, ran tests, and asked him and us a ton of questions. He really was a superhero!
So here is how it went. Our first visit was kind of the pre-screening for the second visit. He had to get some blood drawn and a few tests to see what everything was before he took any of the medicine. One day he took the medicine and an IV was put in so that they could draw blood multiple times without having to be poked multiple times. This was to determine how much of the medicine he would recieve in the second part of the study. He had no problems with the medicine or the blood draws. He really was awesome! The hardest part for him was keeping his hand straight. Then the last day was one more blood draw and a couple other quick tests and we were on our way.
The second visit he actually took the medicine for 7 days. He had a couple predose blood draws and a couple tests like the first time, but once he started the medicine we were really on our own until the last couple days. The second to the last day was another all day blood draw day so he had to get the IV again. It didn't go as well this time, only because they couldn't find the veins as well so we ended up in the arm which was a little more difficult to keep his arm straight. But he was still awesome! The last day was one more quick blood draw, a couple tests and we were on our way. He seriously could not have been a better patient!
If you are still reading you are an awesome person!
They had told us not to expect any changes in them while they were on the medicine because 7 days is really not long enough to be on it to make a difference. Well, it made changes. He was so calm and relaxed. His speech was slow (in a good way) and clear. Here are a few quick stories. I wanted to go downstairs and get a pop one morning. I said, "Tyson let's go get a pop." He said, "Mom, I can't go downstairs in my pajamas. That's silly!" Me, "well you're right Tyson, here are some clothes." Tyson, "Thanks Mom, I appreciate that!" Seriously about fell on the floor. One night while eating dinner at the Rainforest Cafe (talk about sensory overload!) he spilled his Sprite on his brand new Bulls jersey. My kids ALWAYS freak out when they spill. I was ready to pack up and leave because I knew what was coming. Instead, he reached over the table, got a napkin, wiped it off, and said "that's better!" And went on with his dinner. Holy ****!!
So kind of bittersweet. Now I know this medicine is out there and can't get it until it gets to the next stage of research. I was told at the latest it would be the end of 2013. I have to keep it in perspective though, I just found out the boys have Fragile X Syndrome in March, it's only September...
I promise in the next post I will put lots of pictures of all the fun stuff we did while we were there. Thank you for reading! :)
Friday, September 7, 2012
Fragile X Walk-October 6
I believe there are still a few of my friends and family that are not on Facebook that maybe still read my blog even though I have been terrible at it lately, so I am going to add our walk information here too. We always do a walk in June as a large family for Autism Speaks. This year I decided that I wanted to do a walk to raise money and awareness for Fragile X Syndrome since it is such a smaller field then Autism. The research that is going on in this field is absolutley amazing and is directly going to change our kids futures. To give an example, the Autism Speaks walk had hundreds of teams and thousands of people. Our Fragile X Walk has 5 teams. We have had such amazing support in the past with our other walks that if we raised that much for Fragile X research and awareness we would be making a HUGE difference and it has such a direct impact on our family. I can't explain the feeling for Joel and I when we do these events. It is such an amazing feeling to know that we have all this support and that it comes from everywhere. We have amazing family and friends and know that we would not be able to do any of this without your support. Thanks so much! Just click on the link below!
Lundstrom Family Page
And then to kill two birds with one stone, here are the boys on the first day of school!
Lundstrom Family Page
And then to kill two birds with one stone, here are the boys on the first day of school!
Charlie - Preschool
Tyson - 3rd Grade
Friday, August 31, 2012
Last Day of August
I realized that I needed to do a post today or I would have a big goose egg for the entire month on here. So here I am. What a summer! I can't believe it is almost September and football season begins. We really did not have much of a true summer around here. Between summer school, camp, KSU Speech, etc. we seemed to keep very busy.
Tyson played baseball and loved it. I was a very proud mom during our last game. He hit the ball everytime he was up and played in the field awesome. He came a long ways this season. Whenever he was called out and ran all the way home sliding in safe everytime. The fans all cheered and he did a little victory dance. He was convinced that he had hit a homerun everytime because he went around all the bases. Very funny, but next year he will have to learn that he has to go straight to the dugout when he gets out. Wish us luck!
Charlie played soccer for the first time and loved it. If it weren't at 8pm on a weeknight I think he would have liked it even more. He has a lot to learn but especially that there is no tackling in soccer. They played tag one night and in Charlie's head that meant that you tackled the person with the ball. Wrong sport buddy. I think we will try again next year though, he really kind of looked like he knew what he was doing out there (minus the tackling, of course).
Tyson played baseball and loved it. I was a very proud mom during our last game. He hit the ball everytime he was up and played in the field awesome. He came a long ways this season. Whenever he was called out and ran all the way home sliding in safe everytime. The fans all cheered and he did a little victory dance. He was convinced that he had hit a homerun everytime because he went around all the bases. Very funny, but next year he will have to learn that he has to go straight to the dugout when he gets out. Wish us luck!
Charlie played soccer for the first time and loved it. If it weren't at 8pm on a weeknight I think he would have liked it even more. He has a lot to learn but especially that there is no tackling in soccer. They played tag one night and in Charlie's head that meant that you tackled the person with the ball. Wrong sport buddy. I think we will try again next year though, he really kind of looked like he knew what he was doing out there (minus the tackling, of course).
4th of July was a little different for us this year. First, we were missing the Lundstrom's from Colorado because Jenn was due in the middle of July and couldn't travel. Second, it was on a Wednesday so the visitors we did have weren't actually still here on the 4th. It was the first 4th of July we were without family so it was kind of weird. We had a lot of fun with Joel's family here before the holiday though. Lots of eating, drinking, hanging out, and of course some boating. I love having visitors and hope they keep coming down every year.
Charlie and Cousin Braydon
Trouble!
Love this one!
Hahaha!
Tyson and Kellan
Another trip this summer was to visit our newest neice, Lila Lundstrom! We made a short weekend trip to Denver to meet her. It is a long, boring drive but it is all worth it when you hold that sweet baby.
OK, that is all I can do today. Next up, our amazing trip to Chicago and our new puppy Molly!
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