Here it is finally! I just got through an exhausting week of VBS after getting back from vacation. Maddy went to spend the night with Bethany last night and I slept like I was in a coma (Maddy is definitely the child who wakes us up at night...now we know for sure) so this morning I am finding a bit of time to complete another post.
After the family reunion, we flew to Minneapolis for our first ever AMC conference. We were excited and nervous about how it was going to go. Basically hoping that we hadn't paid a lot of money for nothing. At least that was what I was thinking. Maddy was super excited to go to "her" conference as she called it.
We got to Minneapolis about 8:30 in the evening. We rented a car and by the time we got to the hotel it was after 9. It was still light outside! We hadn't eaten anything and the kids were exhausted so we ended up ordering soup and salad through room service. It was a bit pricy but the price I'd expected from the menu was not too bad. Well the whole thing ended up being $60 after the 13% tax, delivery charges, gratuity, etc. Lesson learned. We found out the next day if you go out and buy your food at the restaurant you only get charged 10% tax. Eeesh. That's a high price to live in a city that has covered walkways between all buildings downtown because of the incredibly harsh winters.
Actually Minneapolis was a really nice city and we had a lot of fun. It is a great place to be in the summer but I'll get to that in a minute.
The first day of conference we got up and got everyone ready about 10 minutes before everything was about to start so we grabbed a coffee and some fruit and a pastry for Maddy from the little shop in the hotel and rushed down to the conference to get checked in. They gave us some name tags. Maddy was really mad that she didn't get one. They were the kind on the strings that you put around your neck...lanyards...I think that's the word I'm looking for? so they thought it would be a choking hazard for kids. Anyway, they had some opening slide shows. An 18 year old girl with AMC played the harp! As most of you know from Maddy, a lot of time AMC really effects hand, finger movement, etc. She had started playing the harp when she was 10 for finger therapy kind of stuff. The keynote speaker was an announcer for the New Orleans Saints. He is not a person you would hear on TV or the radio. His job is to call the plays and get the information to the booth. He also teaches school at a Catholic School and kayaks as a hobby. I was not terribly impressed with his speech. It was kind of all over the place, but it was really neat to see an adult who grew up before a lot of the modern treatments for AMC and how he had overcome that to be a successful individual. He also talked a lot about overcoming his personal anger at how he perceived himself as a teenager because of the rejection he experienced and how he came to understand that that rejection wasn't because of his condition but because of the anger and the perception that he had about himself.
After that was over, we went to grab some breakfast in the hotel restaurant. For being at the Hyatt, everyone was super laid back. They let Maddy eat from the buffet for free. Aaron and I split steak and eggs. I have never had that for breakfast before and it was delicious! One thing I loved about Minneapolis was that they were really into their food. There is a fancy restaurant up there that we didn't go to called "Crave". It has a completely gluten free menu that it is famous for; it has been on national news I believe. The steak and eggs that we has was grass fed and cage free. It was really easy to get healthy food all around the downtown area where we were. They had a Chipotle and then some little French bakeries, etc. that offered good salads.
Aaron had a meeting at lunch so he left and I took the kids back to the room to rest/nap during the conference lunch break. Aaron got back just as Kelsay was waking up, so perfect timing. We went down for the afternoon session. I attended a session about PT in the early years. Didn't learn anything new except that Maddy's treatment has been in line with what everyone else does it seems, so that was good to know. While I was in that, Aaron took the kids to the kid session where they had games. Maddy had a lot of fun with that. Then I took the kids while he went to a session. I don't remember what he attended.
During the supper break, we went out into downtown for the first time. There were lots of new high rises mixed with old churches and other buildings. They had a lot of fun fountains and just different sculptures and things. The weather was absolutely perfect. Sunny and 70's. We walked down to Chipotle and sat on the patio for supper. After eating, we went back to the hotel for the talent show. Maddy had a lot of fun watching that. One kid got up a did a river dance act. Another was a pretty impressive singer. Others, it was just impressive they were up there participating. We left the talent show a bit early because we had to run over to Target to get Kelsay some pacis because she'd lost all of hers somehow. Target is a two story store in downtown. I had forgotten that Minneapolis was Target's hometown. The Target store, despite being two floors and having a revolving door in which I got stuck with the stroller and from which I was saved by Bob Marley's young cousin, was not impressive. It was a mess, poorly stocked (they only had one kind of paci to choose) and a real pain to get around with strollers and kids being on two floors. The escalator had a thing you could put the cart in and take it upstairs. Maddy loved that part of it.
The next day we had more conference stuff. Aaron and I both attended sessions that were for Dad's and Mom's of AMC'ers as they called them at the conference. I took Maddy and Kelsay to a library time in the kids room. Again, lots of fun for Maddy. Even Kelsay enjoyed. She liked watching all the kids. That afternoon Aaron went to an information session on some robotic arms that this guy is developing for people who can't lift their arms. It has been used a lot for adults but the development for kids is fairly new. If you look for WREX, magic arms, and Emma on YouTube I think you can find the video of what he is doing. It has been a super popular video with over a million views and has given them a lot of momentum for the project. They guy is trying to start a non-profit for people to be able to get money to help them buy the arms because they are so expensive right now. We might get involved in helping with that, which is really exciting.
That afternoon, the sessions were kind of winding down, and we wanted to see more of Minneapolis so we went out to walk around. Someone had told Aaron about some sculpture gardens that were an easy walk from the hotel. The fountain above is one we saw on our walk over. The walk was short but killer because we only had one stroller with us because of the plane so we had to carry one kid at all times. I also had to take the big, huge, heavy diaper bag. My shoulder was so sore from carrying that around the next day. Anyway...the walk was beautiful and the gardens were really cool. My pictures got out of order from here on out so sorry. There are some thrown in of other parts of the conference/things we did.
The sculpture gardens had a lot of interactive kind of pieces of art. Maddy's favorite was the swing sculpture. She kept trying to go back to it the whole time we were there. It was funny because the first time I pretty much had to force her to get on. Then, once she got on, she wouldn't stop. By the end she was confident enough to get up on it on her own and stand by herself.
This sculpture was spoon with a cherry on top but I guess the cherry got cut out. The guy taking out pic didn't know how to use my camera. He thought he wasn't taking any pictures and then found out he'd taken about 10 without even knowing it.
This was my favorite sculpture. It is bronze and the artist made all the pieces look like old scrap wood and then put it together in the shape of a horse. Really impressive to me.
We found a hot dog cart and Maddy was hungry so we enjoyed a break by the spoon fountain.
This sculpture was really fun too. It was a mirror but it was made in such away that if looked like you were standing on the other side of a clear barrier. I think this one was Kelsay's favorite. Maddy had fun playing with her twin (sometimes quadruplets depending on where she was standing).
The snowman? Not sure what this one was called but had to be something like that.
Confidence on the swing achieved!
After about two hours playing around the sculpture gardens, we headed back for some dinner. Just got something and ate it in the room because our kids were having meltdowns. After eating, resting, and a nap for K, we went out again and found a pedicab to take us down to the river for the fireworks. They had a blues band down there so Maddy did some dancing. Then K and I went to find a place to sit and soaked ourselves in mosquito spray. We ended up sitting right by some people from the conference so that was fun. Aaron and Maddy stood in line for almost an hour to get an ice cream cone. The fireworks didn't start til 10 because that's when it got dark. We all really enjoyed. They shot them off from an island in the middle of the river so we were really close to where they were shooting them. I had wondered if K would get upset at the noise but she had a great time.
We walked back to the hotel after everything was over. MM was exhausted so she sat in the stroller and went to sleep. K stayed awake for the entire walk back but passed out as soon as we laid her down. You can tell from the pic below that they had partied hard all day.
The next morning we did what Maddy had been looking forward to all conference, painting. They had a whole exhibition room plasticked and taped off and were letting the kids go to town. They only provided red, blue, yellow, and white, but Maddy knows how to mix here own colors. I think the people were pretty impressed with her knowledge of that. She also got to paint on the canvas for the AMC painting. Everyone who walked in got to paint on it and then an artist takes it and makes it into something. We saw the before and after one from last year and what she actually does is just paint over everything the kids did, so kind of gimmicky to get people to buy a copy as a fund raiser. At least that's my opinion.
After painting we got a late breakfast and then went to catch our flight at the airport. Security was ridiculous. They stopped Maddy because they didn't know what to do about her brace. By the time the whole thing was over, Maddy was crying because she thought they were going to "do something to her". Nothing happened except the supervisor getting mad at them because they made a big deal out of it but the metal detector did not go off so they actually didn't need to call him or do anything about it at all!
K turned 5 months that day! The pic below, I took at Mom and Dad's. She was waving at Grandad and saying "huh! huh! Huh!" for "hi". She got two bottom teeth the day we left for the conference. And she was getting the hang of rolling from tummy to back and back to tummy. She is an expert at that now. She wants to crawl so bad. I will be shocked if she is not scooting around on her tummy in another month.
Overall, the conference was good and we'd like to go back. I don't know if we'll go every year, but it is definitely worth staying connected. Most of the information they gave, we had already learned, but it was nice to see other families and people of all ages with AMC. I think it was just good for Maddy to see other people because she had never met someone else with AMC before this. She didn't really make an bosom buddies, a little young for that yet, but she talks a lot more about having arthrogryposis. She will tell people now, "I have arthrogryposis." She also loves telling people about the convention. We've had conversations about how someone gets arthrogryposis, why no one else in the family has it, etc. I forgot to mention that I took her to a session on "Lower Limb Deformities". They went over a lot of the surgeries for different contractures, conditions, etc. I would point out when he was talking about a surgery she had and she really liked that session. I think she just liked understanding what kind of surgery she had and why. When we were at the ranch visiting Aaron's grandparents, I heard her ask Aaron if she would have arthrogryposis in heaven. Aaron said no you won't. She said, "But I think I might like to still have it. I'll ask Jesus." This was confirmation to me that the conference really gave her a confidence boost in who she is and helped her realize that there are other people out there who are like her and that who she is is something to be proud of.
After the family reunion, we flew to Minneapolis for our first ever AMC conference. We were excited and nervous about how it was going to go. Basically hoping that we hadn't paid a lot of money for nothing. At least that was what I was thinking. Maddy was super excited to go to "her" conference as she called it.
We got to Minneapolis about 8:30 in the evening. We rented a car and by the time we got to the hotel it was after 9. It was still light outside! We hadn't eaten anything and the kids were exhausted so we ended up ordering soup and salad through room service. It was a bit pricy but the price I'd expected from the menu was not too bad. Well the whole thing ended up being $60 after the 13% tax, delivery charges, gratuity, etc. Lesson learned. We found out the next day if you go out and buy your food at the restaurant you only get charged 10% tax. Eeesh. That's a high price to live in a city that has covered walkways between all buildings downtown because of the incredibly harsh winters.
Actually Minneapolis was a really nice city and we had a lot of fun. It is a great place to be in the summer but I'll get to that in a minute.
The first day of conference we got up and got everyone ready about 10 minutes before everything was about to start so we grabbed a coffee and some fruit and a pastry for Maddy from the little shop in the hotel and rushed down to the conference to get checked in. They gave us some name tags. Maddy was really mad that she didn't get one. They were the kind on the strings that you put around your neck...lanyards...I think that's the word I'm looking for? so they thought it would be a choking hazard for kids. Anyway, they had some opening slide shows. An 18 year old girl with AMC played the harp! As most of you know from Maddy, a lot of time AMC really effects hand, finger movement, etc. She had started playing the harp when she was 10 for finger therapy kind of stuff. The keynote speaker was an announcer for the New Orleans Saints. He is not a person you would hear on TV or the radio. His job is to call the plays and get the information to the booth. He also teaches school at a Catholic School and kayaks as a hobby. I was not terribly impressed with his speech. It was kind of all over the place, but it was really neat to see an adult who grew up before a lot of the modern treatments for AMC and how he had overcome that to be a successful individual. He also talked a lot about overcoming his personal anger at how he perceived himself as a teenager because of the rejection he experienced and how he came to understand that that rejection wasn't because of his condition but because of the anger and the perception that he had about himself.
After that was over, we went to grab some breakfast in the hotel restaurant. For being at the Hyatt, everyone was super laid back. They let Maddy eat from the buffet for free. Aaron and I split steak and eggs. I have never had that for breakfast before and it was delicious! One thing I loved about Minneapolis was that they were really into their food. There is a fancy restaurant up there that we didn't go to called "Crave". It has a completely gluten free menu that it is famous for; it has been on national news I believe. The steak and eggs that we has was grass fed and cage free. It was really easy to get healthy food all around the downtown area where we were. They had a Chipotle and then some little French bakeries, etc. that offered good salads.
Aaron had a meeting at lunch so he left and I took the kids back to the room to rest/nap during the conference lunch break. Aaron got back just as Kelsay was waking up, so perfect timing. We went down for the afternoon session. I attended a session about PT in the early years. Didn't learn anything new except that Maddy's treatment has been in line with what everyone else does it seems, so that was good to know. While I was in that, Aaron took the kids to the kid session where they had games. Maddy had a lot of fun with that. Then I took the kids while he went to a session. I don't remember what he attended.
During the supper break, we went out into downtown for the first time. There were lots of new high rises mixed with old churches and other buildings. They had a lot of fun fountains and just different sculptures and things. The weather was absolutely perfect. Sunny and 70's. We walked down to Chipotle and sat on the patio for supper. After eating, we went back to the hotel for the talent show. Maddy had a lot of fun watching that. One kid got up a did a river dance act. Another was a pretty impressive singer. Others, it was just impressive they were up there participating. We left the talent show a bit early because we had to run over to Target to get Kelsay some pacis because she'd lost all of hers somehow. Target is a two story store in downtown. I had forgotten that Minneapolis was Target's hometown. The Target store, despite being two floors and having a revolving door in which I got stuck with the stroller and from which I was saved by Bob Marley's young cousin, was not impressive. It was a mess, poorly stocked (they only had one kind of paci to choose) and a real pain to get around with strollers and kids being on two floors. The escalator had a thing you could put the cart in and take it upstairs. Maddy loved that part of it.
The next day we had more conference stuff. Aaron and I both attended sessions that were for Dad's and Mom's of AMC'ers as they called them at the conference. I took Maddy and Kelsay to a library time in the kids room. Again, lots of fun for Maddy. Even Kelsay enjoyed. She liked watching all the kids. That afternoon Aaron went to an information session on some robotic arms that this guy is developing for people who can't lift their arms. It has been used a lot for adults but the development for kids is fairly new. If you look for WREX, magic arms, and Emma on YouTube I think you can find the video of what he is doing. It has been a super popular video with over a million views and has given them a lot of momentum for the project. They guy is trying to start a non-profit for people to be able to get money to help them buy the arms because they are so expensive right now. We might get involved in helping with that, which is really exciting.
That afternoon, the sessions were kind of winding down, and we wanted to see more of Minneapolis so we went out to walk around. Someone had told Aaron about some sculpture gardens that were an easy walk from the hotel. The fountain above is one we saw on our walk over. The walk was short but killer because we only had one stroller with us because of the plane so we had to carry one kid at all times. I also had to take the big, huge, heavy diaper bag. My shoulder was so sore from carrying that around the next day. Anyway...the walk was beautiful and the gardens were really cool. My pictures got out of order from here on out so sorry. There are some thrown in of other parts of the conference/things we did.
Part of Minneapolis's "green" feel. Bikes for rent and a recycle bin beside every trash can. |
Beautiful oriole but can't really see the orange markings in the pic. They were all over the place. |
The sculpture gardens had a lot of interactive kind of pieces of art. Maddy's favorite was the swing sculpture. She kept trying to go back to it the whole time we were there. It was funny because the first time I pretty much had to force her to get on. Then, once she got on, she wouldn't stop. By the end she was confident enough to get up on it on her own and stand by herself.
This sculpture was spoon with a cherry on top but I guess the cherry got cut out. The guy taking out pic didn't know how to use my camera. He thought he wasn't taking any pictures and then found out he'd taken about 10 without even knowing it.
This was my favorite sculpture. It is bronze and the artist made all the pieces look like old scrap wood and then put it together in the shape of a horse. Really impressive to me.
We found a hot dog cart and Maddy was hungry so we enjoyed a break by the spoon fountain.
This sculpture was really fun too. It was a mirror but it was made in such away that if looked like you were standing on the other side of a clear barrier. I think this one was Kelsay's favorite. Maddy had fun playing with her twin (sometimes quadruplets depending on where she was standing).
The snowman? Not sure what this one was called but had to be something like that.
Confidence on the swing achieved!
After about two hours playing around the sculpture gardens, we headed back for some dinner. Just got something and ate it in the room because our kids were having meltdowns. After eating, resting, and a nap for K, we went out again and found a pedicab to take us down to the river for the fireworks. They had a blues band down there so Maddy did some dancing. Then K and I went to find a place to sit and soaked ourselves in mosquito spray. We ended up sitting right by some people from the conference so that was fun. Aaron and Maddy stood in line for almost an hour to get an ice cream cone. The fireworks didn't start til 10 because that's when it got dark. We all really enjoyed. They shot them off from an island in the middle of the river so we were really close to where they were shooting them. I had wondered if K would get upset at the noise but she had a great time.
We walked back to the hotel after everything was over. MM was exhausted so she sat in the stroller and went to sleep. K stayed awake for the entire walk back but passed out as soon as we laid her down. You can tell from the pic below that they had partied hard all day.
The next morning we did what Maddy had been looking forward to all conference, painting. They had a whole exhibition room plasticked and taped off and were letting the kids go to town. They only provided red, blue, yellow, and white, but Maddy knows how to mix here own colors. I think the people were pretty impressed with her knowledge of that. She also got to paint on the canvas for the AMC painting. Everyone who walked in got to paint on it and then an artist takes it and makes it into something. We saw the before and after one from last year and what she actually does is just paint over everything the kids did, so kind of gimmicky to get people to buy a copy as a fund raiser. At least that's my opinion.
After painting we got a late breakfast and then went to catch our flight at the airport. Security was ridiculous. They stopped Maddy because they didn't know what to do about her brace. By the time the whole thing was over, Maddy was crying because she thought they were going to "do something to her". Nothing happened except the supervisor getting mad at them because they made a big deal out of it but the metal detector did not go off so they actually didn't need to call him or do anything about it at all!
K turned 5 months that day! The pic below, I took at Mom and Dad's. She was waving at Grandad and saying "huh! huh! Huh!" for "hi". She got two bottom teeth the day we left for the conference. And she was getting the hang of rolling from tummy to back and back to tummy. She is an expert at that now. She wants to crawl so bad. I will be shocked if she is not scooting around on her tummy in another month.
Overall, the conference was good and we'd like to go back. I don't know if we'll go every year, but it is definitely worth staying connected. Most of the information they gave, we had already learned, but it was nice to see other families and people of all ages with AMC. I think it was just good for Maddy to see other people because she had never met someone else with AMC before this. She didn't really make an bosom buddies, a little young for that yet, but she talks a lot more about having arthrogryposis. She will tell people now, "I have arthrogryposis." She also loves telling people about the convention. We've had conversations about how someone gets arthrogryposis, why no one else in the family has it, etc. I forgot to mention that I took her to a session on "Lower Limb Deformities". They went over a lot of the surgeries for different contractures, conditions, etc. I would point out when he was talking about a surgery she had and she really liked that session. I think she just liked understanding what kind of surgery she had and why. When we were at the ranch visiting Aaron's grandparents, I heard her ask Aaron if she would have arthrogryposis in heaven. Aaron said no you won't. She said, "But I think I might like to still have it. I'll ask Jesus." This was confirmation to me that the conference really gave her a confidence boost in who she is and helped her realize that there are other people out there who are like her and that who she is is something to be proud of.
Comments