Long time followers of my site may remember how Superstar, my son, had to have surgery November 2009 for ITW. He had cast on his feet till about New Years 2010. From New Years 2010 to about October 2010 he had to wear AFO on both of his feet.
I'm sharing that bit of background because we again today had to see the Pediatric Orthopedic Surgeon for another follow up. It has been about 6 months since our last follow up. At today's follow-up we were told to keep things that status quo and see you again in December.
Keeping things status quo means no braces (AFO) for at least the next 6 months! By the time this December rolls around it would have been 25 months post surgery and 14 months of no AFO. Superstar STILL toe-walks, but it's only about 10-15% the time unlike pre-surgery when it was 100% of the time. It's for this reason we have to continue to see the surgeon to monitor his range of motion etc. If Superstar start to loose his range of motion or if he starts to toe-walk majority of the time then he will have to be put back into AFOs.
Edit: I originally said 48 months post surgery... where was my brain? It should have read 25 months. I fixed it!
Showing posts with label ITW. Show all posts
Showing posts with label ITW. Show all posts
June 28, 2011
October 28, 2010
Update: Superstars ITW, braces, recovery
Wow! Can you believe that nearly a year go is when SS had surgery for ITW? Seeing him ice skate, run and play yesterday makes it hard to believe that almost a year ago both of his feet were in a cast! Followed by painful walking with the cast ON.
When the casts came of on New Years 2010 he was given braces (AFO's) to wear. He has been wearing them religiously since then. We have been able to have them off for up to 4 hours per day, which allowed him to do things like soccer April 2010 and swimming over the summer. Yes he was playing soccer just 5 months after surgery!
Well this pass Tuesday we had seen the surgeon for an another post surgery follow up. This is what the surgeon told us:
Yep that's RIGHT we were told that he does not need the braces! At LEAST for the next 2 months. We will see the surgeon again right after Christmas and will learn then if he'll need a new set of braces. A new set would mean braces for 12 months. Oh and he does NOT need physical therapy! Which just amazes me because I was so sure that he would.
A visual for just HOW bad things were for Superstar! The chart below will show you the range of motion he had before surgery and the range of motion he has now in his feet. Both feet were pretty equal prior to surgery and both feet are pretty much the same now.
Before surgery the max range of motion he had with his foot was at the 30 degree mark on the picture. The doctor called this -30. That means that was the furthest his foot would go back when pushing on the toes. Prior to surgery he could not even make his toes to be perpendicular to the floor.
Today his foot flexes all the way to the 10 degree mark the the picture. He has GAINED 40 degrees of motion!!! This is a LOT better then what even the doctors thought! They are simply amazed at his range of motion and it's clear when we are with them how amazed they are.
So here we set nearly 12 months post surgery. SS has gained 40 degrees of motion and is brace (AFO) free for at least the next 2 months! Do you know how odd it is for me NOT to be telling him to put his shoes and braces on and see him run around the house in just his socks? He had to wear shoes with his brace. So for about 12 hours a day he wore shoes AND braces.
He also the last 2 days been more active!!! Running like won't believe! It must feel really good to have your feet free!!!! He knows that come Christmas he may need braces again. However he said to me well that's okay at least I get 2 months without them for sure!
When the casts came of on New Years 2010 he was given braces (AFO's) to wear. He has been wearing them religiously since then. We have been able to have them off for up to 4 hours per day, which allowed him to do things like soccer April 2010 and swimming over the summer. Yes he was playing soccer just 5 months after surgery!
Well this pass Tuesday we had seen the surgeon for an another post surgery follow up. This is what the surgeon told us:
Yep that's RIGHT we were told that he does not need the braces! At LEAST for the next 2 months. We will see the surgeon again right after Christmas and will learn then if he'll need a new set of braces. A new set would mean braces for 12 months. Oh and he does NOT need physical therapy! Which just amazes me because I was so sure that he would.
A visual for just HOW bad things were for Superstar! The chart below will show you the range of motion he had before surgery and the range of motion he has now in his feet. Both feet were pretty equal prior to surgery and both feet are pretty much the same now.
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Before surgery the max range of motion he had with his foot was at the 30 degree mark on the picture. The doctor called this -30. That means that was the furthest his foot would go back when pushing on the toes. Prior to surgery he could not even make his toes to be perpendicular to the floor.
Today his foot flexes all the way to the 10 degree mark the the picture. He has GAINED 40 degrees of motion!!! This is a LOT better then what even the doctors thought! They are simply amazed at his range of motion and it's clear when we are with them how amazed they are.
So here we set nearly 12 months post surgery. SS has gained 40 degrees of motion and is brace (AFO) free for at least the next 2 months! Do you know how odd it is for me NOT to be telling him to put his shoes and braces on and see him run around the house in just his socks? He had to wear shoes with his brace. So for about 12 hours a day he wore shoes AND braces.
He also the last 2 days been more active!!! Running like won't believe! It must feel really good to have your feet free!!!! He knows that come Christmas he may need braces again. However he said to me well that's okay at least I get 2 months without them for sure!
March 30, 2010
Superstar Update: Toewalking/AFO
Today we seen the orthopedic surgeon for another post surgery follow-up. Long time followers of my blog know that Superstar had surgery around Thanksgiving 2009 for ITW (idiopathic toe walking).
We decided for treatment we would do surgery. So he has been recovering nicely from surgery. Walking was tough and hard just 10 days after surgery with the cast on, however he did it and has not stopped since then! We are so proud of him!
After the cast came off Superstar was given AFOs to wear. He STILL has to wear the AFOs, however we were told he could go up to 4 hours per day without them. Currently he has been wearing them from the moment he wakes up to the moment he goes to bed. So it's nice to know he can go some time during the day without them.
Today we were given the okay for any sport that Superstar wants to do! For some sports he can't wear his brace so if he did that sport activity that day it would count towards his time without the brace. Today we were told that it looks like there will NOT be a second surgery. So that was good news. Today we were told that he will NOT need physical therapy! We see the doctor again at the end of June so that might change, but the surgeon is confident that he will NOT need physical therapy.
Today we got told that we can get an adjustment done on his AFOs to allow the ankle joint to articulate, move. Currently his AFOs do not allow for that movement, but that will change this Thursday. We will go in and they will adjust his AFOs and put a hinge at the ankle to allow it to move. I'll post pictures of that later this week.
To top of today's post I've added a video of Superstar walking and running up and down our hallway. Looking at the video of him walking in his cast made me realized how far he has come the last few months!
UPDATE: I also wanted to update and show some pictures of him standing WITHOUT his brace. This is SO MUCH different then back in June before surgery. BEFORE surgery he could NOT put his heels down on the ground even if wanted too!
He's outside now in his socks! I don't care! We just realized this is the first time in his life that his heels have touched grass! (when walking). He's going to be 9 in a few short months, and so it's just amazing! I asked him how does it feel to have walked and have the grass touch your heels? His response "GREAT!!!!!!!"
We decided for treatment we would do surgery. So he has been recovering nicely from surgery. Walking was tough and hard just 10 days after surgery with the cast on, however he did it and has not stopped since then! We are so proud of him!
After the cast came off Superstar was given AFOs to wear. He STILL has to wear the AFOs, however we were told he could go up to 4 hours per day without them. Currently he has been wearing them from the moment he wakes up to the moment he goes to bed. So it's nice to know he can go some time during the day without them.
Today we were given the okay for any sport that Superstar wants to do! For some sports he can't wear his brace so if he did that sport activity that day it would count towards his time without the brace. Today we were told that it looks like there will NOT be a second surgery. So that was good news. Today we were told that he will NOT need physical therapy! We see the doctor again at the end of June so that might change, but the surgeon is confident that he will NOT need physical therapy.
Today we got told that we can get an adjustment done on his AFOs to allow the ankle joint to articulate, move. Currently his AFOs do not allow for that movement, but that will change this Thursday. We will go in and they will adjust his AFOs and put a hinge at the ankle to allow it to move. I'll post pictures of that later this week.
To top of today's post I've added a video of Superstar walking and running up and down our hallway. Looking at the video of him walking in his cast made me realized how far he has come the last few months!
UPDATE: I also wanted to update and show some pictures of him standing WITHOUT his brace. This is SO MUCH different then back in June before surgery. BEFORE surgery he could NOT put his heels down on the ground even if wanted too!
He's outside now in his socks! I don't care! We just realized this is the first time in his life that his heels have touched grass! (when walking). He's going to be 9 in a few short months, and so it's just amazing! I asked him how does it feel to have walked and have the grass touch your heels? His response "GREAT!!!!!!!"
December 8, 2009
Winter Wonderland Blues
I know this week many other people have already gotten their winter wonderland. Now it's our turn! The snow is coming down. We already have about an inch and will get 10 inches before the system is done later tonight.
I know many kids are happy and thrilled to have the snow, especially that first major snow fall. However, I have one little boy that is feeling blue today! He can't go outside and play due to the casts that are on his feet. They can't get wet!
So no outside fun for us today! This is one of those it sucks moments!
I know many kids are happy and thrilled to have the snow, especially that first major snow fall. However, I have one little boy that is feeling blue today! He can't go outside and play due to the casts that are on his feet. They can't get wet!
So no outside fun for us today! This is one of those it sucks moments!
December 4, 2009
Update: ITW Surgery
I've had a few people ask how's Superstar doing? Is he stir crazy? Well he's doing FINE! NO more pain meds. He's been off of those since about Nov 23rd. That's almost 2 weeks no meds.
He started walking on Nov 27 and has not stop! He really does everything on his own. Everything but bathing that it. I have to give him a sponge bath to avoid getting the casts wet. We were told that we could put them in trash bag and duct tape the bags shut around his legs/casts. However after talking it over we were afraid that was too risky! We really do not want to get these things wet.
Around the house he does great. If he wants a drink then he gets one; If he needs a bathroom break then he goes all by himself. At meal times and school times he sits at the table with NO wheel chair. As a matter of the fact the wheel chair has found a permanent home in the trunk of our car. It is only used now for church, shopping, and things of that nature where it would be easier to use the wheel chair vs having him walk.
Besides the weather here as been a bit on the wet side with snow/rain. So we like to keep him from walking when outside to help avoid the moisture. He has his boot and sock to put on over the casts and that does help, but the less walking where there is moisture the better. (In our opinion).
There are even moments that Superstar walks without the walker. Often it's when he's not thinking about it. It just happens. Sometimes he even startles himself when he does that. So things are going good. Honestly, if it wasn't for those strange green and blue things on his legs you wouldn't even know! LOL
I even forget sometimes. For example I took them to the gym with me the other day and left them in the child care room. When I came back to get them Superstar was crawling around. (He does that when he's super tired of walking). I looked at him and told him to get up and walk, totally forgetting for a moment WHY he was crawling. He just looked at me and said but Mom I'm.... and before he could finish I said "It's okay. You can crawl here, I just forgot for a moment that's all". He did speed up the crawl after that.... LOL
So things are going really really well!
He started walking on Nov 27 and has not stop! He really does everything on his own. Everything but bathing that it. I have to give him a sponge bath to avoid getting the casts wet. We were told that we could put them in trash bag and duct tape the bags shut around his legs/casts. However after talking it over we were afraid that was too risky! We really do not want to get these things wet.
Around the house he does great. If he wants a drink then he gets one; If he needs a bathroom break then he goes all by himself. At meal times and school times he sits at the table with NO wheel chair. As a matter of the fact the wheel chair has found a permanent home in the trunk of our car. It is only used now for church, shopping, and things of that nature where it would be easier to use the wheel chair vs having him walk.
Besides the weather here as been a bit on the wet side with snow/rain. So we like to keep him from walking when outside to help avoid the moisture. He has his boot and sock to put on over the casts and that does help, but the less walking where there is moisture the better. (In our opinion).
There are even moments that Superstar walks without the walker. Often it's when he's not thinking about it. It just happens. Sometimes he even startles himself when he does that. So things are going good. Honestly, if it wasn't for those strange green and blue things on his legs you wouldn't even know! LOL
I even forget sometimes. For example I took them to the gym with me the other day and left them in the child care room. When I came back to get them Superstar was crawling around. (He does that when he's super tired of walking). I looked at him and told him to get up and walk, totally forgetting for a moment WHY he was crawling. He just looked at me and said but Mom I'm.... and before he could finish I said "It's okay. You can crawl here, I just forgot for a moment that's all". He did speed up the crawl after that.... LOL
So things are going really really well!
November 27, 2009
Look Who's Walking!
Superstar is walking! He just started to do that today. He still is walking on his toes. However, I some what expected that seeing that's his "habit". I'm more sure then ever that he will need some kind of physical therapy or we will need some training so that we can help break him of the habit.
However I'm happy that he's up walking! At the end of the video Web-Princess had a message for everyone. I think the camera didn't pick her voice up clearly so I'll share here what she said. "My brother is awesome. Kisses for everyone...kiss...kiss...kiss." Enjoy!
However I'm happy that he's up walking! At the end of the video Web-Princess had a message for everyone. I think the camera didn't pick her voice up clearly so I'll share here what she said. "My brother is awesome. Kisses for everyone...kiss...kiss...kiss." Enjoy!
November 23, 2009
Back To School!
Today, we did our normal full day of work! Which is pretty good seeing Superstar just had surgery for ITW last week. He still doesn't want to leave the house, however he said it was "great to be sitting" at the table doing his school work. Seeing both feet are cast it's easier to sit at the table in his wheel chair.
November 20, 2009
Slowly recovering from ITW surgery
He is slowly recovering from the surgery he had last Wednesday. Last night was a little ruff. We called the doctor and was given Valium to go with his Tylenol with codeine. Just now he decided that he wanted to try to stand. He stood for several seconds, but that was enough.
He also has gone 5 hours (while awake) without his medication. We just realized 5 hours has passed so we told him here is some medication. He may have been able to go longer, but we didn't want to totally risk it you know!
November 17, 2009
Comments Are Moderated!
I LOVE comments but they are moderated for a good reason! From time to time I get the SPAM post about this or that and other things that would not be good for my blog or readers. Sometimes I get comments just letting me know about xyz, because it's tends to be an easy way to contact me :)
I know there are SPAM bots out there that will deposit their SPAM comments and those don't really bother me, it tends to be clear when it's a SPAM bot. I do NOT mind the comments letting me know about xyz, because I know they are doing it for a good reason and they just want me to know about xyz. NO Biggie! I don't approve them because they aren't related to the topic of the post, but I do see them because of moderation!
I also know that not everyone is going to agree with me and that's cool too! I don't expect everyone to agree with me and for the most part I will approve any comment as long as it's related to the topic of the post. However, I had a comment today regarding my sons surgery that totally crossed the line! This is the first time I've had this happen and I've been blogging for almost a whole year! (I'm sure it won't be the last)
I didn't approved the comment because it totally crossed the line and I'm sorry that someone would say something so cold hearted, mean, and uncalled for about my 8-year-old son!!
Well I've said my piece! Carry on! For those of you that pray please keep my son and the unnamed commenter in your prayers. DH is right someone that would say something so mean and cold-hearted is in need of some serious prayers!
I know there are SPAM bots out there that will deposit their SPAM comments and those don't really bother me, it tends to be clear when it's a SPAM bot. I do NOT mind the comments letting me know about xyz, because I know they are doing it for a good reason and they just want me to know about xyz. NO Biggie! I don't approve them because they aren't related to the topic of the post, but I do see them because of moderation!
I also know that not everyone is going to agree with me and that's cool too! I don't expect everyone to agree with me and for the most part I will approve any comment as long as it's related to the topic of the post. However, I had a comment today regarding my sons surgery that totally crossed the line! This is the first time I've had this happen and I've been blogging for almost a whole year! (I'm sure it won't be the last)
I didn't approved the comment because it totally crossed the line and I'm sorry that someone would say something so cold hearted, mean, and uncalled for about my 8-year-old son!!
Well I've said my piece! Carry on! For those of you that pray please keep my son and the unnamed commenter in your prayers. DH is right someone that would say something so mean and cold-hearted is in need of some serious prayers!
Surgery Is Tomorrow!
Just a quick note! Superstar's surgery is tomorrow morning. Please keep him in your prayers.
For those of you that are new to my blog, Superstar surgery is for ITW. (Idiopathic Toe Walking). He was suppose to have the surgery the Wednesday before Halloween, but that got canceled due to illness. (We had the flu). So it has been rescheduled and will be tomorrow morning. Thanks for the prayers.
September 3, 2009
Results: Idiopathic toe walking (ITW)
Well we went and saw the Pediatric Orthopedic Surgeon today. I'm glad we went "early" because it took us 30 minutes just to go through the process of signing in, especially seeing we were "new" patients. They took Superstar's picture today too for his records, which I still don't understand why that was necessary.
Anyway to the point. The Pediatric Orthopedic Surgeon looked at Superstar today, had him walk up and down the hall several times. Check his flexibility (or lack of it in the ankle area), reviewed his MRI and EMG/NCV results and told me that is diagnosis is Idiopathic Toe Walking (ITW).
Treatment: Well there are several treatment options, serial castings, botox, braces, and surgery. Some of these options can be done on their own, some can be in conjunction with other treatments.
However I was told today that Superstar's ITW is so severe that our only treatment option is surgery. The surgeon explained that we could do the serial casting and the botox, but he strongly felt that there would only be a 5% chance of them working. So in short he felt going that route would be a waste of our time and money. Surgery, would also require casting for 6 weeks after surgery, followed by Superstar having to where an ankle-foot orthosis for several years.
An ankle-foot orthosis is basically a brace that he would have to wear. His shoes would go over the brace. Part of the reason the Dr is saying that Superstar would have to wear a brace for years, is because of how severe his toe walking is; that if not made to wear the brace of the extend period of time that Superstar would go back to toe-walking. (At least that is the doctors opinions)
I of course still have to talk to DH about all of this and we still have to process everything that was said. We could even go and get a second opinion, something the doctor even told me today, I could do. As I mention before in order to get a second opinion I would have to drive a several hours away. There simply is not another doctor with this specialization in my area. The doctor told me today that in the few months he's been in town, that he has seen 15 other cases like my sons, that have ITW, and that we are the first ones he has told that needs surgery. The doctor told us that even though he feels there is only a 5% change of the serial casting and botoxing to work that he would still do those things if that's what we wanted to do.
This was not exactly the news we wanted to hear today. Please pray for us.
Anyway to the point. The Pediatric Orthopedic Surgeon looked at Superstar today, had him walk up and down the hall several times. Check his flexibility (or lack of it in the ankle area), reviewed his MRI and EMG/NCV results and told me that is diagnosis is Idiopathic Toe Walking (ITW).
Treatment: Well there are several treatment options, serial castings, botox, braces, and surgery. Some of these options can be done on their own, some can be in conjunction with other treatments.
However I was told today that Superstar's ITW is so severe that our only treatment option is surgery. The surgeon explained that we could do the serial casting and the botox, but he strongly felt that there would only be a 5% chance of them working. So in short he felt going that route would be a waste of our time and money. Surgery, would also require casting for 6 weeks after surgery, followed by Superstar having to where an ankle-foot orthosis for several years.
An ankle-foot orthosis is basically a brace that he would have to wear. His shoes would go over the brace. Part of the reason the Dr is saying that Superstar would have to wear a brace for years, is because of how severe his toe walking is; that if not made to wear the brace of the extend period of time that Superstar would go back to toe-walking. (At least that is the doctors opinions)
I of course still have to talk to DH about all of this and we still have to process everything that was said. We could even go and get a second opinion, something the doctor even told me today, I could do. As I mention before in order to get a second opinion I would have to drive a several hours away. There simply is not another doctor with this specialization in my area. The doctor told me today that in the few months he's been in town, that he has seen 15 other cases like my sons, that have ITW, and that we are the first ones he has told that needs surgery. The doctor told us that even though he feels there is only a 5% change of the serial casting and botoxing to work that he would still do those things if that's what we wanted to do.
This was not exactly the news we wanted to hear today. Please pray for us.
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