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

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!!