If You Or Someone You know Has Blount's Disease, I Really Want To Hear From You! Please Email Me!

Now, there is a place to go... Now, we are no longer alone...

BenHasBlounts@gmail.com

Wednesday, October 22, 2014

Potty Training!

Oh the joy! When you have traveled the distance and see the road ahead that is diaper free... Whether you are a first time parent, or a seasoned pro, the end of the diaper era is a wonderful accomplishment! 

Getting to that point when your child is in a leg brace can have it's challenges though. There have been numerous posts in the  BHB Network asking for tips on potty training. So here we go!

First and foremost .... BREATHE! Don't be so hard on yourself and feel pressure for your little one to be a potty genius. We all have those friends or family members who tell us things like, "She should really be toilet trained by this age." Or, "He's still in diapers?" You know your child better than anyone else. If you feel good about the potty, so will your child. 

When Ben came to the age where potty training was in sight, I left it completely up to him. It was a huge relief for me to give up this control. I had the added bonus that Ben was my third child. So I was pretty confident at my parenting skills at that point. When Ben turned two, I put the training potty in the bathroom, and prepared for potty training to start.



Here are a few tips that you might find helpful:

~ When you are at home with your little one, take their pants off so that the diaper or pull-up is easily accessible. I know some parents with little girls put leggings on under the KAFO's. This makes it hard to get to the potty in time if you have to completely remove the brace. So I would suggest cutting the legs off of the leggings, or switching to another thin sock like Baby Legs. 





Here is a perfect example, courtesy of one of the members in the Network





~ If your child is in a lock-kneed brace, you might try designating an hour or two during the day for the brace to be unlocked so that your little one can more easily sit on the potty until they get the hang of things. 

~ Buy loose fitting underwear when the time comes. I actually ended up cutting the sides of Ben's underwear so that it was easier to pull down over the brace. Pull-ups with the Velcro on the side work well also.  Some parents have even cut their children's underwear and attached their own Velcro for easy removal. 



Another photo courtesy of a Network member. This is very similar to what I did with Ben


Most important thing...

~ Don't rush it! If your child isn't interested in going potty, don't force them to go. It only adds to your frustration and theirs. I promise you that when your kid is ready, it will happen! 


 When Ben would use the potty I sang every potty song and danced around like a crazy person. We read potty books at bedtime, and we would ask him if he needed to go potty. I never forced him to go, or pressured him in any way. I only made sure that it was available if he felt the inclination to use it.

Super Cute Picture of Ben When he First Started Going Potty!

Stay positive! As with most every obstacle in parenting, the more positive you are, the more positive your kids will be. The end of diapers is in sight! Pave your way to the promised land with lots of encouragement and tons of patience. It will all be worth it in the end!

I would love to hear from you! Please feel free to email me with your potty training stories and concerns, or with anything else regarding Blounts Disease at BenHasBlounts@gmail.com. For extra support find the BHB Facebook Page or join the Ben Has Blounts Network. It is a wonderful resource for parents and others who are affected by Blounts Disease. 





Tuesday, June 10, 2014

BHB Families...

Even though I am not great at keeping up with new blog posts, BHB is still in full swing! Most of the interaction I have with parents, now comes from the members in the Ben Has Blounts Network on Facebook. Nearly every week, we are adding new members and hearing about different experiences with this disease. It is so rewarding to see these posts; and know that we are all able to help one another. I encourage anyone who is affected by Blounts Disease to join our group!

One of our group members, Angela, has recently started her own blog in hopes of reaching out to more families and keeping her own family up to date on her daughter's progress. I'd like to share the links with you here. I am also posting the links to her GoFundMe page. As most of you know, treatment for childhood disease is quite expensive! I promise to blog with a Ben update soon!



Angela has also started a Facebook Page! Check it out here.


Wednesday, September 12, 2012

Up In The Air... 501c3...

What a crazy and exciting time for BHB!! There are so many things in the works & up in the air... Lots of "maybes" too!

We MAY BE on the verge of something BIG!

We MAY BE on the verge of gaining a fiscal sponsor...

We MAY BE on our way to helping a TON of children!

What I know for sure...

Ben Has Blounts is applying for 501c3 Non Profit Status. This means that BHB will be ready to receive large donations that will be tax deductible for the donor; and will also be eligible to receive grants. For the past year; BHB has only been set up to recieve $5,000 in donations annually. That is all about to change...

I am currently seeking the help of a Fiscal Sponsor. That, would allow BHB to "piggy back" on another established 501c3; so that BHB can start accepting large donations now; rather than having to wait until all of the paperwork comes back.

I am also working on a few fundraisers to help me with the cost of applying for the 501c3. I am waiting on a few calls; and should have MOST of my questions answered by this time next week.

I am super energized, and highly motivated to get the ball rolling on so many projects that I have been dreaming about for a long time now... Finally, it is all coming together. Amazing things are happening; and I can not wait to let everyone know!

Stay tuned for the fundraisers! And, if you have any ideas you would like to share with me, I would LOVE to hear from YOU!



Tuesday, September 11, 2012

Update: Shea's Story, Continued...

Everyone remembers Shea. Her sweet little baby face; and her warrior Momma Zoe... I am so thankful to have maintained contact with them throughout this past year; as they traveled on their journey through Blounts Disease.



Zoe is a member of the Ben Has Blounts Network on Facebook; and has kept us all updated on Shea's progress. The following, is what she wrote to share with all of you...

"After Shea's Diagnosis of Blount's in April of 2011, I have seen doctors in NYC and Denver; and then I went to a clinic for Shriner's Hospital in Denver, and Shea was accepted as a patient. After being seen by doctors there, I felt that Shriner's was the place that I felt most comfortable and confident that Shea would get the best treatment.

All the other doctors that saw Shea wanted to do surgery as the first option of treatment because they did not believe that bracing can be successful. As a parent, I did not want surgery to be the first option for treatment, since there is a window of opportunity for bracing I wanted that to be tried before surgery. With that being said the doctors at Shriner's wanted to keep a close eye on Shea.

Over the past year or so we have done x-ray's every six months. There is a period of development that happens from approximately age 12 months to 2 1/2 years, that a spontaneous correction can happen. When the doctors did not see that happening, bracing was suggested in July of 2012.

 Shea started wearing her KAFO braces in August of 2012 and has been such a “ROCK STAR” having to relearn to walk, run, and all the things that she was able to do before her braces. Now September, Shea is wearing her braces 23 hrs a day and walking, running, and climbing. Shea wears them at night for sleep in the locked position and free motion during the day. We have had her braces adjusted 2x and they are saying that they already see improvement in her legs."




Wednesday, August 22, 2012

Ben Had Blounts...

Hello World! This is post is SO long overdue! Every few months over the past year, I have sat down to write to you all; and the words have not found a way out... I am here though... So here we go...

What a crazy, wonderful, insightful year it has been! BHB has a community on Facebook that it growing everyday. I am still getting emails from families all over the world on a regular basis. And, although I LOVE hearing their stories, and meeting new people; it breaks my heart that our children have to endure the heartache along side us. Everyday I read a story that inspires me; and when a parent that I have maintained contact with for a long period, finally is able to start treatment for their child, I am overjoyed.

I can still remember the feelings of horror and disbelief we felt when Ben was diagnosed with Blounts Disease. I can still see those frightening images we came across while doing our research... Although those images are still out there, now, there are images of Ben. 

I can still remember when I was such an emotional wreck, grasping, and hoping, and reaching out on message boards just trying to find ONE person who could tell me what would happen to my precious boy. What does Ben's future hold? I still have the email from the first family who found my blog; and I can still remember the relief in knowing that we were not alone on this journey.  

I can still remember staying strong, and acting normal through countless doctor visits; and x rays, and castings. When really, I was terrified. Scared that Ben would see through my smiles and tickles, and we would both fall apart.

But...

I can also remember the first time I saw Ben walk with his feet pointed forward; and how accepting all of the kids at his preschool were; that they never, not once asked why Ben had on braces. I remember every email, every name, and every country of the people I have come in contact with.

And...

I remember going to our beloved Dr. Deering's office last Fall. Getting Ben's x rays back and seeing that he no longer was considered "Blounts"... He no longer needed the braces we had hated to love... And now I can say, "Ben Had Blounts".


Monday, June 20, 2011

Ben's Fourth Appointment With Dr. Deering...

Ben, Waiting to Get Xrays
Well. we had another visit with Ben's Orthopaedic Surgeon, Dr. Deering, this past week. On this visit we had Ben's legs X-rayed, so that we could see whether the disease in his knees was causing his bones to worsen; or if the KAFO's were able to start correcting.

The last time we took X-rays; it seems as though the "beaking" on Ben's left Tibia was on the verge of fracturing. If the bone had started to fracture this time, it  would put Ben at a Langenskiold Stage of 4.


Langenskiold Staging
 Ben was not to thrilled about getting more X-rays.... He screamed and cried and had to be held down by myself and another technician. Luckily, his legs relaxed for all of two seconds; and we were able to get a good picture.

When it was time to see Dr. Deering, she seemed very pleased with the way that Ben looks now. Almost surprised at the progress he has made. Dr. Deering let Ben play on her iPad; while she looked at his legs; twisting and turning them to see the severity of the disease. She told me that not only are Ben's knees very affected with Blounts Disease, but because of how much disease in in the left knee, it is also affecting his left hip. While Ben was laying on his tummy, Dr. Deering showed me exactly what the problem was by holding Ben's left foot and ankle, and then slowly "cranking" his leg to the outside of his body. I was a little taken back at how far she was able to go; and by the fact that it didn't seem to bother Ben at all! As I have said before; my concerns as of lately have been more focused as to the rotation of Ben's legs. Really, all we can do is try and use the Thera Tog more; and keep moving forward.

Dr. Deering and I also discussed Ben's ankles. I have also been concerned that they seem to be "caving" inwards. She explained to me that most children his age are "flat footed"... but that Ben is a little more than that. Because of everything else he has going on with his left leg, she wrote me a prescription for his right foot. Something called an "Arch Angel"... I will update with more information after I do some more research. Basically, it is an orthopaedic insert for the shoe.

On to The X-Rays...

I feel SO good about these new x-rays! Ben's knees look amazing, in my opinion! Dr. Deering was also very excited and enthusiastic while we were looking at them. The tip of the tibia is still beaking; but not as much as it was in January. Also, it doesn't look even close to fracturing now. Which is AMAZING! On a Langenskiold Stage, Ben would be in between a 2 & a 3... closer to a 2.

June 2011

January 2011
Ben is going to continue the use of the KAFO and the Thera Tog until we go back to see Dr. Deering, in four months, in October. In October, it will be one year since Ben got the diagnoses of Blounts Disease. We have a PT appointment with Lisa coming up also, so I will update again soon!

Thank you all again, for your continued support! I hope to hear from more parents soon! If you have any questions, or would like to share your story with me... Please email me at ...

BenHasBlounts@gmail.com

Sunday, June 12, 2011

Doing More...



At the beginning when your child gets diagnosed with Blounts Disease; there is sometimes a long wait in between appointments and fittings. I know how frustrating it can be to want to help your child as soon as possible. There are a few things you can do from the very beginning; that will help your child start the healing process.


"W" Sitting...

Probably one of the most important things you can do!! Don't let your child sit in a "w" position!!
I noticed with Ben; that even if he "sits right" all day long... he ALWAYS "w" sits in the bath.
Here is a video I took of Ben "w" sitting while he was playing...



Of course, while your child is wearing a KAFO brace, they are only able to "sit right". "W" sitting can undo an entire days worth of bracing. All children, not only those have have Blounts, should never "w" sit; it is extremely hard on the joints.


Physical Therapy...

I am a big time believer in the benefits of PT! In my opinion, it is an essential part of the treatment for Blounts Disease. Often times, the wait to get an appointment with a specialist can be anywhere from a few weeks, to a few months. Going to PT in the meantime may give you some peace of mind; as well as help your child. You can go to any PT you like. My advice though, would be to call your specialist's office and see which PT they use. That way, it is easier for the specialist and PT to communicate. If they don't use a PT; my advice would be to find a PT that is familiar in pediatric physical therapy.


Finding Support...

A good support system is key when dealing with any obstacle, especially a rare disease. When we first found out that Ben had Blounts Disease last fall, I was unable to find any type of support group in our community. I was also unable to find a forum or discussion group online for Blounts Disease. I really just wanted to talk to one other family who could understand how we were feeling. That is why I started this blog! Now, there is a group on Facebook called the "Ben Has Blounts Network". It is a great resource where families can get together, ask questions, give advice, and discuss concerns. Families, and people JUST LIKE YOU; who are trying to understand Blounts Disease, and get the best treatment for their child.


Remember... Take care of yourself! You are the most important advocate your child has. If you are unhappy with the treatment you are getting. Or, if you don't think the brace your child is using is working... Get another opinion! Do what ever you have too, to ensure that your child is getting the best care possible. Stay positive; and follow your instincts.

Have any questions? Want to send me a private email? I'd love to hear from you!

BenHasBlounts@gmail.com



Wednesday, June 8, 2011

First Event... In The Bag!

I know some of you were wondering how "Bounce for Blounts" went... It went great!

The event lasted 3 hours... The first hour was Pretty busy,
The second hour was steady,
& the last hour was dead...

But, all in all I thought it was great to get the first event under my belt. It was a learning experience for sure!

BHB has a few more fundraisers and appearances this summer; I will put them up as soon as I know the dates for sure!

Here are some pictures from "Bounce for Blounts"


JumpTime Colorado!!

Hotdogs!!

Ben... The Tiger!


Bouncing!!


Friday, May 27, 2011

It's On!! Bounce for Blounts Information!!

Bounce for Blounts Information

I'm so excited about this event! I hope to see everyone there!
I have had SO much support from our community;
without that support, this would have been nearly impossible!


Here is a map, just in case you need it!



I want to mention a few people who have made this event possible...

Thank you Ed, from Buds Signs for donating the banners we will use at B4B...

& also to Roger from Partyland for donating a tent for us to set up our information booth...

& also to Mesa Developmental Services for designing & printing flyer's!










A BIG "shout out" to JumpTime Colorado
&
Whaz up Dawg

You guys were the first on board; and I can't wait to see you at the event!!

If you have any questions about Bounce for Blounts or Ben Has Blounts, please email me at BenHasBlounts@gmail.com

Saturday, May 14, 2011

BHB Local News Coverage...



Recently, BHB has had a lot of local press; which is super exciting!

I wanted to share with you, the recent article in the Daily Sentinel

And thanks to that article, I was approached by a local news station for an interview.

Unfortunately; the news station is having some technical difficulties, so the story is not longer available online. However, I took a recording off of my television to share with everyone!



Special thanks to Matt Vanderveer, from KKCO 11 News in
Grand Junction, CO
& to
Richie Ashcraft from The Daily Sentinel in
Grand Junction, CO

& last, but not least...

A HUGE thank you to Lindsay Ellis from
She has been a great support & resource for BHB

Help Me, Help You...



What if... Every time a child was diagnosed with Blounts Disease,
Their parents had a place to go...
That had all of the information on the best care available
in the area where that family lived?

It is possible!

I need your help. I would like to start a database of doctors, physical therapists, orthotists...
And I would like to start with you.

Where is your child being treated?

Who is your child's Doctor?

What type of treatment is your child getting?
( surgical, non-surgical, bracing, PT, etc. )

What kind of brace does your child have?

Who provided that brace?

Are you satisfied with the care you are getting?

Do you need help finding a different provider?

We can all help each other get the best treatment for our kids. Please email me, and tell your story about Blounts Disease. I truly will do everything I can to help you find the answers to any questions you might have... and in turn, I can gain more knowledge, to help more families.

Even if you live outside of the U.S. !!!

I want to hear from you!

Please email me @ BenHasBlounts@gmail.com

Together, we can make a difference; one family at a time!



Tuesday, April 26, 2011

"Bounce For Blounts"...

I have been SO excited to share this news with everyone... and I'm done keeping it to myself! BHB is going to have its first official event! I don't have ALL of the details worked out... but here's what I do have:

~ June 4th, 2011

~Longs Park in Grand Junction Colorado from 11-2p.m.

~ So far, I have bump& jumps, courtesy of "Jump Time Colorado"

~ 'Whaz Up Dawg' hot dog stand will be there

~ Face painting, and plenty of other things for children to take part in. The cost for the bump & jump will be per family, not per child. I will make a formal posting as soon as I hear back from a few more people.... I think its going to be GREAT! I hope to see everyone there!

Shea's Story...

Recently I was contacted by a mother named Zoe, who lives here in Colorado, where I also live. Her daughter Shea, has just been diagnosed with Infantile Blounts Disease. Zoe is doing a great job at gathering information, so that she can be the best advocate for Shea. She is also brave enough to share Shea's Story with all of us... This is what Zoe had to say...


Beautiful Shea...
 Shea (18 months) was diagnosed with Blount's Disease (Tibia Vara) in April of 2011.  We are trying to find the best answer with the least amount of risk for her treatment.  One of her doctors is suggesting surgery but we are getting some other opinions to see if bracing might be an option.  Shea has a great spirit and is an amazing lil girl with lots of energy and love to share with the world. Both of Shea's legs are curved the angle is R 20* L 30*.  She started to walk at 91/2 months and has been in the 97% for height since she was born but she is not overweight.  We tried the Dennis Brown bar for 6 months after being informed she had Internal Tibial Torsion.  Due to the fact that she was so young Blount's could not be verified.  Shea has had no improvement, and now has the diagnosis of Blount's.  We want our lil girl to get a chance to lead a normal active life and are prepared to do anything and everything to make that happen.  I want to thank Kira for starting this blog to open people's eyes to this rare condition and having a great support system available for the families that are dealing with this situation. ~



Shea Playing... if you look closely, you can see the
 signs of Blounts Disease

I am so happy that BHB is a place where our stories can be heard. There are many children who are struggling with this disease. The more we share, the more families we can reach & support.

Thank you
Zoe, for being a voice
for Shea; you are an inspiration!



You can view a video of Shea on BHB's YouTube Channel...

Friday, April 22, 2011

Unique Streaks Raffle...



This particular raffle is for Western CO residents only, unless you are planning a trip to the Grand Valley! I have a few more raffles in the works.... so stay tuned for those, some of them will be better suited for people all over the U.S.

Remember that all of the money going towards these raffles will be used to pay the legal fees for BHB to turn into a non profit! Then the REAL fundraising will begin! Thank you all so much for your support these past few months; and a special thank you to the families I have met who are struggling with Blounts Disease. These families have let me in, shared their experiences with me; and are my motivation to keep moving forward with BHB.


Now Let's Help Some Kids!!!

Thursday, April 21, 2011

April Updates...

There is so much going on with BHB this month! I haven't blogged in a while; but I am working on a few things that I hope will give some insight and helpful information to everyone soon.

I did want to let you know the latest happenings with BHB becoming a non-profit, and all of the fundraising I have been trying to do...

Recently, I was interviewed by the Daily Sentinel, which is the local newspaper in my community. There is already a story online; and there will be another story next week, in the actual paper. A photographer came out to the house today to take pictures. Ben did great! Blew bubbles, and splashed us with the bottle! Then, of course, I turned the camera on him!




Ben & Dean Humphrey from the Daily Sentinel
The Basketball Raffle concluded yesterday. It didn't go as well as planned; but I am going to stay steadfast & keep having raffles! The next one is for gift certificates to a local salon; I think it will go over pretty well!

I am also working on an event that will be called "Bounce for Blounts" that will be held later this summer. I am working with a lot of local vendors, and some friends.... I am REALLY excited! I will keep everyone updated when I have all of the details!

Please know that I am working as hard as I can, to get BHB up & running! I am SO eager to start really helping the families who find me. We need treatment for our kids! Treatment that works, and doctors who know what they are doing, and how to treat Blounts Disease. It breaks my heart, when I hear that a family is unable to find the support of physicians because their child doesn't meet the "stereo-typical" standards that were brought forth years ago!! Blounts Disease affects kids of ALL races, ALL backgrounds, ALL body types...

I want to hear from you! Who is your child's Doctor? Are you satisfied with the level of care you are getting? Would you recommend the doctor to anyone else struggling with Blounts?

Monday, April 11, 2011

Ben Has Blounts 'Network'....

A few weeks ago, I set up a Facebook page for BHB. If you haven't seen it; you definately should check it out! I haven't found another forum where as parents we can get together; ask questions; and share our stories. I honestly believe that through eachother is how we will learn more about this disease, and the treatments offered.

So many times, as parents we feel that we aren't doing enough... If we only did "this" better. Or tried harder. Or found the right information... Give yourself a pep talk! You do the best you can! If you have an idea or a question that you need to have answered, why not try a forum specifically for those who are struggling with Blounts? I can tell you, that when you are able to talk with another person who is going through the same thing it is such a comfort!

If you or someone you know has questions about Blounts Disease, I want to hear from you!

Email me @ BenHasBlounts@gmail.com

Or come join the 'Network' on Facebook!

http://www.facebook.com/?ref=home#!/home.php?sk=group_190868670933387&ap=1

Tuesday, April 5, 2011

Basketball Skills Session Raffle!!


So happy to have this first raffle going! A special "thank you" to Lindsay at http://www.grandvalleymomsformoms.com/, and her husband for donating these services.

 This particular raffle is for Western CO residents only, unless you are planning a trip to the Grand Valley! I have a few more raffles in the works.... so stay tuned for those, some of them will be better suited for people all over the U.S.

Remember that all of the money going towards these raffles will be used to pay the legal fees for BHB to turn into a non profit! Then the REAL fundraising will begin! Thank you all so much for your support these past few months; and a special thank you to the families I have met who are struggling with Blounts Disease. These families have let me in, shared their experiences with me; and are my motivation to keep moving forward with BHB.

Now Let's Help Some Kids!!!

Saturday, April 2, 2011

Going All The Way...

The feeling I've been having of wanting to do more for  those affected by Blounts Disease has not gone away. If anything, it is growing stronger by the day! Last week I talked with a wonderful woman at a small law firm in California. I'm pretty sure I am going to be using their services to turn BHB into a Non Profit.

Its very exciting, and very scary at the same time. It is a big commitment... But I really feel that it is an important step that I need to take to really try and make a difference.

First things first... I have to have a "board"... 2-3 people; who I can trust to take on some responsibility and help me run BHB. At this stage in the game, it would require a few hours a week; getting on forums, raising money, sharing ideas, etc... It would be helpful to have at least one person on the team with experience in accounting.

I also need to pay the lawyers. Right now I am trying to raise $500 to make the first payment to them. The cost will be around $2500 total. After considering it, I think this is well worth the money. They take care of all of the filing, everything legal; so that BHB can be up & running as quickly as possible! It's really important to me that it is done quickly... Blounts Disease can worsen so fast, and I want to get to these kids before surgery is their only option.

So... I NEED YOUR HELP! If you have ANY ideas on how to raise money, or if you need help promoting a fundraiser for BHB... Please let me know! OR if you are interested on being a board member... please email me at BenHasBlounts@gmail.com

Thank you all SO much for all of your support thus far.... It's only the beginning!!

Friday, March 25, 2011

Officially Tweeting....

In an effort to get more people aware, and hopefully get more funding... BHB is now on Twitter! 

I have been wishing so badly lately that I could help families affected with Blounts Disease. Wouldn't it be nice if these parents could take their children to any doctor they want to get the help that they need? What is those same families were able to get braces and other treatment for their kids right away? Or help with physical therapy? If BHB had the funding, these are the things I would like to help with.  

It is my goal that within the next six months, BHB will have a non-profit organization status. I also want to have a new website that is more efficient so that everyone can find the information that they need and really be a sounding board for each other. I KNOW these things will happen; it just takes time and hard work!

So if you are on Twitter.. make sure to follow Ben Has Blounts!



Thursday, March 24, 2011

Ben's Sixth Physical Therapy Appointment...

After an extremely long night of sleeplessness thanks to Ben.... we went and saw Lisa yesterday. Ben was quite uncooperative this go around. Of course I suppose that is what happens when a two year old wakes up at 3:30 in the morning!

Finally, after using a sucker to bribe him with... Ben started walking the hall so that Lisa could watch his legs. I was really hoping to get rid of the Thera Tog on his right side.... Even though it has done wonders for Ben; he seems to mind it a little more now. Instead, we decided to use a longer strap to wrap around his leg and keep it "out toe". We also added a Thera Tog hip strap to Ben's left side. Its a little tricky with the KAFO... But I am really glad that this hip strap will help with the rotation issue I have been worrying about with Ben's left leg.

Lately, it seems like when Ben isn't wearing his braces, he is ready to trip over his feet again. It makes me really sad to see him get back to this point. At the beginning, all we did was address his in toeing and his gate. We didn't have the KAFO brace, just the Thera Tog. Now that we are using the KAFO, his bones are looking better, his leg is straighter; but his rotation is taking steps back. Its a very frustrating time in Ben's treatment. I haven't met another person who has used the Thera Tog to treat Blounts Disease; so I'm not sure if this is a common issue or not. I guess I'll pave the way!

I also wanted to let everyone know, that the metal in Ben's KAFO is starting to make holes in his pants. I usually just put him in sweats so that it is comfortable for him. So if you are on your way to getting a  Blounts KAFO; I would recommend cheap pants and iron-on patches for the inside of the knee area.


This Is a video of Ben walking without  the strap on his right leg...



This is a video of Ben walking with the strap on...



The difference is subtle; but still a difference. We chose to keep the strap on to help with the rotation of his right leg. He also has the hip strap on his left leg (the leg with the KAFO) which is helping with the rotation of his right leg.


Has anyone heard of the Eight Plate? If you have any experience with this surgery; I really would like to hear from you! Please email me at