Monday, August 31, 2009
Watch the news!
We're going to be on the news tonight! Fox at 9, WTVO and other local channels at 10!!!! We were totally caught off guard, but how neat!
Wednesday, August 26, 2009
Update
Check out this video, specifically at the one minute mark!!!! This was on Good Morning America last Saturday!!!
http://www.youtube.com/watch?v=ooRIz4fOP4g
Wow, lots of stuff to update on. We went on vacation last week to Boston and Maine. We realized before hand that this could be a recipe for disaster, but everything worked out great and we had a blast! And, yes….going through security with Jack was interesting! We had a busy time in Boston, followed by a relaxing time in Maine. Jack told us he's moving to Boston when he grows up! He had the time of his life. It was SO nice for us to see him relax and just be a kid. We had a whole week without him complaining of leg pain! And, he ate....and ate...and ate. We've struggled to get him to eat all summer long, and on vacation we struggled to keep him full! He and Max enjoyed all the tours we went on, but loved playing in all the parks throughout Boston. The highlight of the trip was candlepin bowling in Maine. They had a BLAST!
Here’s the highlights of the trip:
Just our hands, we promise.
You know where this is going.
I don’t blame them, it was HOT!
Driving the duck.
Fenway.
The Boston Commons. Max and a stick. He is happiest when walking around collecting sticks and throwing rocks.
Dr. Kogan specifically told us no handstands. oops.
A family picture at a beautiful wedding in Maine.
Before we left, we celebrated a big milestone in our house. Happy 1st birthday Amelia!! Jack was sad the whole day, telling me, “I can’t believe she’s not a baby anymore.”
We got home from vacation in time for Jack to start school on Monday. He wasn’t sure he was ready to trade in sleeping in, swimming, and video games for school! When I picked him up on Monday he was very excited and happy to be back. He told me, “nobody cares about my leg at all.” It was so nice to hear. He’s struggled quite a bit this summer with other kids treating him not-so-great because of the fixator. We are so happy to have him back at school with kids that know him for HIM, not as “the kid with the weird leg.”
So, the countdown is on….9 more days until the fixator is off! Jack is still doing therapy 4 days a week. It’s a little crazy because he goes straight from school to therapy, but he seems to be handling the change quite well!
And HOLY COW...can I just say...that was waaaaaaaay too many pictures for me to resize and upload! For those of you that emailed me asking for pictures of our vacation, enjoy!!!!
http://www.youtube.com/watch?v=ooRIz4fOP4g
Wow, lots of stuff to update on. We went on vacation last week to Boston and Maine. We realized before hand that this could be a recipe for disaster, but everything worked out great and we had a blast! And, yes….going through security with Jack was interesting! We had a busy time in Boston, followed by a relaxing time in Maine. Jack told us he's moving to Boston when he grows up! He had the time of his life. It was SO nice for us to see him relax and just be a kid. We had a whole week without him complaining of leg pain! And, he ate....and ate...and ate. We've struggled to get him to eat all summer long, and on vacation we struggled to keep him full! He and Max enjoyed all the tours we went on, but loved playing in all the parks throughout Boston. The highlight of the trip was candlepin bowling in Maine. They had a BLAST!
Here’s the highlights of the trip:
Just our hands, we promise.
You know where this is going.
I don’t blame them, it was HOT!
Driving the duck.
Fenway.
The Boston Commons. Max and a stick. He is happiest when walking around collecting sticks and throwing rocks.
Dr. Kogan specifically told us no handstands. oops.
A family picture at a beautiful wedding in Maine.
Before we left, we celebrated a big milestone in our house. Happy 1st birthday Amelia!! Jack was sad the whole day, telling me, “I can’t believe she’s not a baby anymore.”We got home from vacation in time for Jack to start school on Monday. He wasn’t sure he was ready to trade in sleeping in, swimming, and video games for school! When I picked him up on Monday he was very excited and happy to be back. He told me, “nobody cares about my leg at all.” It was so nice to hear. He’s struggled quite a bit this summer with other kids treating him not-so-great because of the fixator. We are so happy to have him back at school with kids that know him for HIM, not as “the kid with the weird leg.”
So, the countdown is on….9 more days until the fixator is off! Jack is still doing therapy 4 days a week. It’s a little crazy because he goes straight from school to therapy, but he seems to be handling the change quite well!
And HOLY COW...can I just say...that was waaaaaaaay too many pictures for me to resize and upload! For those of you that emailed me asking for pictures of our vacation, enjoy!!!!
Thursday, August 13, 2009
Three Weeks?!?!?!?!
Nothing makes me happier than to sit down and write about a good day. Today was a good, actually great day. A much-needed great day too!
The last couple of days Jack has been struggling with a few things. We were all so excited about him walking on Tuesday. He asked me to see the video I took of him and he got real quiet for a while afterwards. I finally got him to talk about what was on his mind. The tears and quivering chin came out…he said, “I didn’t know I was going to look like that when I walked. Why are my arms doing that, I look silly.” He was upset and embarrassed by the huge limp he was walking with. So, Wednesday I worked with Jack, trying to get him to step rather than hop. By the time Jon got home that night, Jack was feeling much better. He met Jon at the door saying, “my arms don’t fly around when I walk now.”
Jack got an invitation to a birthday party. He was so excited to go, but I think he was a little nervous too. We were one of the last ones to get there and all his friends came running up to him. For about five minutes they asked him a lot of questions and then they all had fun playing together. We got into the car and Jack says, “Mommy, they didn’t even care about my leg. They didn’t even want to talk about it.” I was telling Jon about this later and I think his comment was right…Jack’s entire sense of self right now is defined by this fixator. It’s almost like he thinks of himself as the kid with the fixator. It's understandable how it's happened....we spend 4 days a week in therapy, anytime we go anywhere people stare and ask questions about the fixator, and I think he overhears Jon and I talking about it a lot. I would say our entire summer has revolved around this fixator, so yes...it makes sense. So, we were glad that spending some time with his friends helped to change that and I’m hoping with time his vision of who he is changes.
So today, we headed to Chicago to see Dr. Kogan. Jack was so excited, he insisted on getting her flowers and writing her a note telling her thank you, I love you, you are a “cool” doctor. Dr. Kogan walked in the room and he was so proud to get up and walk to her. It was such a neat moment to see how proud he was and how flabbergasted she was! He told her all about swimming, the leg press, and riding his bike. She was just absolutely blown away, she kept saying, “who is this kid walking in a fixator? And he rides a bike?!? How does he ride a bike?”
Then she shows us this:
And says this:
“I think it’ll be ready to come off in THREE WEEKS!”
I know it’s really hard to see on the computer, but on the upper right hand side is his foot. On the lower left hand side is his knee. I’ve labeled where start of the new bone is. The next 5.5 cm down is new bone. You can see from the x-ray that it is really close in density (whiteness) to the bone above and below it.
I’m not sure if it’s typical for bone to harden at the pace that his has. Jack likes to think he has super-bone-healing power, while I like to think it’s all the vitamins I’ve been pumping into him. Either way, we are thrilled that this thing is coming off in THREE WEEKS! I've never been so happy to make a trip to the OR! Dr. Kogan is so good to us. When she told us 3 weeks, we realized it’s the Friday before Labor Day. She told us she wasn’t going to be working that day, but would come in just for Jack that morning. I told her she really did not have to do that, but she insisted. Needless to say, I was very happy we had brought those flowers!
The knee surgery she had planned on doing upon removing the fixator is being cancelled/postponed. Nobody can explain it, but Jack’s knee flexion has increased so much through the lengthening. It makes NO sense, but everyone is in agreement….we’ll take it! She won’t be putting him in a cast because she doesn’t want to lose the flexion he’s gained. She was talking about some sort of flexion brace…to be honest, Jon and I were so flabbergasted I don’t think we really listened well enough to know what he’s going to have on afterwards. I know we already have a list of questions about how the pin sites will heal, what sort of shoe he can wear, etc etc. We’ll call her sometime before September 4th and get some answers.
She gave us a prescription for an small external shoe lift. We could do it internally, but she thinks it’ll be easier for him to relearn how to walk with the external lift. Over time we can gradually switch from an external to an external/internal combo to finally an internal lift. Jack wasn’t bothered by having a small lift on his shoes….as long as he can wear his fuzzy crocs (which is fine, he can go without a lift at times).
So, yes….we are so so so happy tonight! Here’s to hoping the next three weeks goes by quickly and smoothly!
The last couple of days Jack has been struggling with a few things. We were all so excited about him walking on Tuesday. He asked me to see the video I took of him and he got real quiet for a while afterwards. I finally got him to talk about what was on his mind. The tears and quivering chin came out…he said, “I didn’t know I was going to look like that when I walked. Why are my arms doing that, I look silly.” He was upset and embarrassed by the huge limp he was walking with. So, Wednesday I worked with Jack, trying to get him to step rather than hop. By the time Jon got home that night, Jack was feeling much better. He met Jon at the door saying, “my arms don’t fly around when I walk now.”
Jack got an invitation to a birthday party. He was so excited to go, but I think he was a little nervous too. We were one of the last ones to get there and all his friends came running up to him. For about five minutes they asked him a lot of questions and then they all had fun playing together. We got into the car and Jack says, “Mommy, they didn’t even care about my leg. They didn’t even want to talk about it.” I was telling Jon about this later and I think his comment was right…Jack’s entire sense of self right now is defined by this fixator. It’s almost like he thinks of himself as the kid with the fixator. It's understandable how it's happened....we spend 4 days a week in therapy, anytime we go anywhere people stare and ask questions about the fixator, and I think he overhears Jon and I talking about it a lot. I would say our entire summer has revolved around this fixator, so yes...it makes sense. So, we were glad that spending some time with his friends helped to change that and I’m hoping with time his vision of who he is changes.
So today, we headed to Chicago to see Dr. Kogan. Jack was so excited, he insisted on getting her flowers and writing her a note telling her thank you, I love you, you are a “cool” doctor. Dr. Kogan walked in the room and he was so proud to get up and walk to her. It was such a neat moment to see how proud he was and how flabbergasted she was! He told her all about swimming, the leg press, and riding his bike. She was just absolutely blown away, she kept saying, “who is this kid walking in a fixator? And he rides a bike?!? How does he ride a bike?”
Then she shows us this:
And says this:
“I think it’ll be ready to come off in THREE WEEKS!”
I know it’s really hard to see on the computer, but on the upper right hand side is his foot. On the lower left hand side is his knee. I’ve labeled where start of the new bone is. The next 5.5 cm down is new bone. You can see from the x-ray that it is really close in density (whiteness) to the bone above and below it.
I’m not sure if it’s typical for bone to harden at the pace that his has. Jack likes to think he has super-bone-healing power, while I like to think it’s all the vitamins I’ve been pumping into him. Either way, we are thrilled that this thing is coming off in THREE WEEKS! I've never been so happy to make a trip to the OR! Dr. Kogan is so good to us. When she told us 3 weeks, we realized it’s the Friday before Labor Day. She told us she wasn’t going to be working that day, but would come in just for Jack that morning. I told her she really did not have to do that, but she insisted. Needless to say, I was very happy we had brought those flowers!
The knee surgery she had planned on doing upon removing the fixator is being cancelled/postponed. Nobody can explain it, but Jack’s knee flexion has increased so much through the lengthening. It makes NO sense, but everyone is in agreement….we’ll take it! She won’t be putting him in a cast because she doesn’t want to lose the flexion he’s gained. She was talking about some sort of flexion brace…to be honest, Jon and I were so flabbergasted I don’t think we really listened well enough to know what he’s going to have on afterwards. I know we already have a list of questions about how the pin sites will heal, what sort of shoe he can wear, etc etc. We’ll call her sometime before September 4th and get some answers.
She gave us a prescription for an small external shoe lift. We could do it internally, but she thinks it’ll be easier for him to relearn how to walk with the external lift. Over time we can gradually switch from an external to an external/internal combo to finally an internal lift. Jack wasn’t bothered by having a small lift on his shoes….as long as he can wear his fuzzy crocs (which is fine, he can go without a lift at times).
So, yes….we are so so so happy tonight! Here’s to hoping the next three weeks goes by quickly and smoothly!
Tuesday, August 11, 2009
Quick update
Jack's been acting a little strange the last few days. He's been pretty cranky, which is unlike him. He's been complaining of some muscle tenderness, which we think is some soreness from PT. There also is a pin that's been bothering him. Yesterday, at aqua therapy, he had a good session but his therapist afterwards told me he was so cold. I instantly knew what was up...fever and achiness.....pin infection! He's been off the antibiotic for a week or so now....we put him back on it last nigt hoping that it clears up the infection ASAP!
Yesterday, he was so sad. He pretty much layed on the couch all day or followed me around asking me if I was mad at him because he wasn't walking yet. One thing about Jack.....he loooooooves his mama. And, if he thinks I am disapointed in him, he just can't handle it. Well, I made the mistake of implying that I think he should be walking by now, and oh boy...he was just a mess thinking that I'm disapointed in him. So today I will make sure to be very reassuring and positive, especially since we are headed to PT.
I think yesterday was a bad day in a string of good days...sort of a reminder that this is still going on and it's still a struggle for him every day. After swimming, I was drying his legs off and he says, "mommy can you be very gentle when you dry my legs?" I asked him why and his eyes filled up with tears, chin quivering and he says, "because I have all these pins in my leg....and these pins make my leg hurt."
It's been almost months since he's "had all these pins in his leg". Hard to believe it's been 3 months, and at the same time....only 3 months???? If all works out on schedule, he'll have this on for another 2.5 months:
lengthening (turning): 50 days
consolidation (bone hardening): 100 days
We are on day 26th of consolidation. W see Dr. Kogan on Thursday to see how his bone is hardening. If it's hardening quickly, she can remove the fixator sooner and put a cast on. I think we're all holding our breaths until Thursday and hoping he's a "super healer" and that xray shows some nice white, dense bone!!!
Funny story...the other day Jack was coloring and all of a sudden we heard something drop on the tile floor. We both looked down and a strut had fallen off the fixator!!!!! Jack was ready to panic, but I started laughing and was able to fix it. This thing is starting to fall apart! Seriously....for $60,000 you would think that it would be better quality! Yes, you read that right.....$60,000!!!! Thankfully, we have really great insurance so we did NOT pay that, but I have to say....our jaws dropped when we got that EOB.
So that's our update for now. I'll definitely update Thursday after our appointment. Jack wants to stop at Dunkin' Donuts and get a donut for Dr. Kogan. He is so excited to see her, but I know he's a little nervous because he's not walking and I think he thinks she expects him to be. Poor kiddo, he puts so much pressure on himself. I think she will be THRILLED to see the video of him riding his bike and swimming the width of the pool.
EDITING TO ADD: Two hours after I posted this blog entry, this happened in my house...out of nowhere......
Yesterday, he was so sad. He pretty much layed on the couch all day or followed me around asking me if I was mad at him because he wasn't walking yet. One thing about Jack.....he loooooooves his mama. And, if he thinks I am disapointed in him, he just can't handle it. Well, I made the mistake of implying that I think he should be walking by now, and oh boy...he was just a mess thinking that I'm disapointed in him. So today I will make sure to be very reassuring and positive, especially since we are headed to PT.
I think yesterday was a bad day in a string of good days...sort of a reminder that this is still going on and it's still a struggle for him every day. After swimming, I was drying his legs off and he says, "mommy can you be very gentle when you dry my legs?" I asked him why and his eyes filled up with tears, chin quivering and he says, "because I have all these pins in my leg....and these pins make my leg hurt."
It's been almost months since he's "had all these pins in his leg". Hard to believe it's been 3 months, and at the same time....only 3 months???? If all works out on schedule, he'll have this on for another 2.5 months:
lengthening (turning): 50 days
consolidation (bone hardening): 100 days
We are on day 26th of consolidation. W see Dr. Kogan on Thursday to see how his bone is hardening. If it's hardening quickly, she can remove the fixator sooner and put a cast on. I think we're all holding our breaths until Thursday and hoping he's a "super healer" and that xray shows some nice white, dense bone!!!
Funny story...the other day Jack was coloring and all of a sudden we heard something drop on the tile floor. We both looked down and a strut had fallen off the fixator!!!!! Jack was ready to panic, but I started laughing and was able to fix it. This thing is starting to fall apart! Seriously....for $60,000 you would think that it would be better quality! Yes, you read that right.....$60,000!!!! Thankfully, we have really great insurance so we did NOT pay that, but I have to say....our jaws dropped when we got that EOB.
So that's our update for now. I'll definitely update Thursday after our appointment. Jack wants to stop at Dunkin' Donuts and get a donut for Dr. Kogan. He is so excited to see her, but I know he's a little nervous because he's not walking and I think he thinks she expects him to be. Poor kiddo, he puts so much pressure on himself. I think she will be THRILLED to see the video of him riding his bike and swimming the width of the pool.
EDITING TO ADD: Two hours after I posted this blog entry, this happened in my house...out of nowhere......
I am speechless!!!
Saturday, August 8, 2009
Wednesday, August 5, 2009
WOOHOO!!!!
Sorry for the lack of update this past week. We got hit with 2 rounds of the stomach flu in 10 days.
Jack continues to be a rockstar at PT. It's is just fascinating to watch his progression each week. He is improving in the treadmill, which is so encouraging. His heel is getting closer and closer to the ground when he walks (still partial weight-bearing). Yesterday he did 2 minutes on the treadmill and was exhausted. He wanted to quit at a minute and a half, but Nicki wouldn't let him. Rebuilding his stamina is going to take time, as is getting him to complete weight-bearing. We're patiently waiting though and happy with slow progress and doing it at his pace.
Our pool was finished this weekend. It is just fabulous, we are so fortunate to have it! The therapeutic benefits for Jack are incredible, but it is so much fun to see him having fun and not struggling! He can swim the width of the pool (16 feet), which is quite impressive! My dad told him he had to be able to swim the width of the shallow end before he could go in the deep end by himself. At first he could do about half the width, but he worked all day and by the end he did the entire distance. And, yes, he completely crashed in bed that night!!!! Max is quite a trip to see in the pool. My dad nicknamed him the "Submarine" because he is NEVER above water...well except for the 50000 times a day he gets out to go to the bathroom! And Amelia is content to float in her shaded floatie chewing on a Finding Nemo toy.
The charity is going fabulous!! The kids had another lemonade stand and although we had very few customers, we did have one big spender, so the day was worth it! And just a word of advice, NEVER drive by a lemonade stand and not stop! Kids get very offended by drive-bys...Jack has been known to shout "what? you don't want to help sick kids?" at cars that don't stop. So, take a moment out of your day and get a cup of lemonade...everyone has a quarter or two in their car!
We went to an O'Neil family reunion last weekend. Not only was it great to catch up with everyone, it was quite heartwarming to see our family rally behind our charity! People were handing us money everywhere...it was hard to keep track of who gave what. So, if you gave us money, THANK YOU!!!!! We are off to Build A Bear this week to start making some bears. Our first donation is going to be to Rockford Memorial. We thought it would be nice to keep it local, and both Jon and my brother in law Jamie (who's daughters are Jack's co-chairs) both work at RMH....it's the perfect place to start!
Jon and I were talking this weekend about our charity and its potential to become something really big. This project has become something VERY important to us. Throughout all we have been through with Jack, we have really avoided asking ourselves the question "why us?" But occasionally (during the really rough moments) we can't help but think, "why me? why Jack?" The thought that something really amazing...like this charity....could come out of all of this answers that question for us. If we have to go through all of this in order to learn how to "pay it forward" we can have peace with all we have been through. So, yes...something great (5.5 cm) has come out of this...but to think that something even bigger than that can happen....WOW!!!
So again...thank you all for your donations! Keep tuned, we have lots of big ideas planned!!!!
Jack continues to be a rockstar at PT. It's is just fascinating to watch his progression each week. He is improving in the treadmill, which is so encouraging. His heel is getting closer and closer to the ground when he walks (still partial weight-bearing). Yesterday he did 2 minutes on the treadmill and was exhausted. He wanted to quit at a minute and a half, but Nicki wouldn't let him. Rebuilding his stamina is going to take time, as is getting him to complete weight-bearing. We're patiently waiting though and happy with slow progress and doing it at his pace.
Our pool was finished this weekend. It is just fabulous, we are so fortunate to have it! The therapeutic benefits for Jack are incredible, but it is so much fun to see him having fun and not struggling! He can swim the width of the pool (16 feet), which is quite impressive! My dad told him he had to be able to swim the width of the shallow end before he could go in the deep end by himself. At first he could do about half the width, but he worked all day and by the end he did the entire distance. And, yes, he completely crashed in bed that night!!!! Max is quite a trip to see in the pool. My dad nicknamed him the "Submarine" because he is NEVER above water...well except for the 50000 times a day he gets out to go to the bathroom! And Amelia is content to float in her shaded floatie chewing on a Finding Nemo toy.
The charity is going fabulous!! The kids had another lemonade stand and although we had very few customers, we did have one big spender, so the day was worth it! And just a word of advice, NEVER drive by a lemonade stand and not stop! Kids get very offended by drive-bys...Jack has been known to shout "what? you don't want to help sick kids?" at cars that don't stop. So, take a moment out of your day and get a cup of lemonade...everyone has a quarter or two in their car!
We went to an O'Neil family reunion last weekend. Not only was it great to catch up with everyone, it was quite heartwarming to see our family rally behind our charity! People were handing us money everywhere...it was hard to keep track of who gave what. So, if you gave us money, THANK YOU!!!!! We are off to Build A Bear this week to start making some bears. Our first donation is going to be to Rockford Memorial. We thought it would be nice to keep it local, and both Jon and my brother in law Jamie (who's daughters are Jack's co-chairs) both work at RMH....it's the perfect place to start!
Jon and I were talking this weekend about our charity and its potential to become something really big. This project has become something VERY important to us. Throughout all we have been through with Jack, we have really avoided asking ourselves the question "why us?" But occasionally (during the really rough moments) we can't help but think, "why me? why Jack?" The thought that something really amazing...like this charity....could come out of all of this answers that question for us. If we have to go through all of this in order to learn how to "pay it forward" we can have peace with all we have been through. So, yes...something great (5.5 cm) has come out of this...but to think that something even bigger than that can happen....WOW!!!
So again...thank you all for your donations! Keep tuned, we have lots of big ideas planned!!!!
I'll end with a picture of Jack's self portrait done in art lessons. I am pretty certain that if my house was burning down, this would be one thing I would run in to save.
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