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



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?

Email me @ BenHasBlounts@gmail.com

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

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!!

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!

http://twitter.com/#!/BenHasBlounts

Keep Those Braces On!

During my research lately, I have been coming across a ton of posts by parents asking how to keep leg braces on their kids. I also had a mom ask me how I keep Ben from taking his off. I know how difficult it can be; so I thought I would give us all a little pep talk!

Don't feel guilty that you aren't doing enough! We all want the best for our kids and it can be SO hard to stay motivated. Especially when your child doesn't want to wear the braces. When Ben was only using the Thera Tog brace I would wake him up from nap a little early so that he was still sleepy and wouldn't fight me. I have also used cookies, suckers, videos on my cell phone... all as bribery to get him to hold still! I really saw a change in his defiance after I was more consistent with putting them on. Now he knows what I'm doing; and he even tries to help.

I think with younger kids, like Ben, it is easy to make up a song, or go through the steps in an enthusiastic way... "Let's put on the BIG sock now!".... "Push your foot in!"... "Wow you are tough".... With older kids however; I can imagine it being more difficult. Ben has two older sisters; so I am familiar with compromise! Here are some ideas you can use to get your older kids on board with the braces:

~ Let them pick out a family movie for everyone to watch...

      "You were such a big kid with your braces today, YOU get to pick out a movie!"

~ Pick an activity for them to do "brace free"...

      "Keep your braces on all day, and then on Friday, we can go to the park with no brace!"

~ Go to the store and pick a special craft, or start a reward chart

~ Show your child videos of other children with braces, let them know they are not alone

~ STAY POSITIVE!

These might seem like little things, and they are... but to a child, positive reinforcement is the best way! I would also hold your ground; don't ask if they will put on the brace; tell them they need to. This is just a part of life... If you aren't upset and frustrated; and you are confident, they will be too.

If you have a few bad days, don't dwell on them! Everyday is a chance to start over...Guilt will help no one. If you still can't get your child to keep the brace on, you might try vet tape. It's sticky on one side, completely flexible; and is safe to use over any type of leg brace. You can find it at feed stores and most medical supply shops. Here is a link to buy it online...

http://www.amazon.com/3M-Elastic-Adhesive-Tape-Inch/dp/B003IYGS24

I am positive that if I can keep Ben's braces on... You can do the same with your child! Don't give up!
Keep those braces on!

Ben during nap... wearing his braces. Thera Tog on the right leg and the KAFO on the left

How do you get your kids to keep their braces on? I'd love to hear your ideas!

Making Connections...

The reason I started documenting Ben's journey with Blount's Disease was so that I could make connections with other families and people affected by Blount's. I am SO thankful for the connections that I have made; and I believe that with more time, there will be even more friendships because of BHB!

I wanted to share with you a few of the wonderful communities I have found online. Although I have not talked to anyone else on these sites...YET... it's good to know that they are available. I would encourage anyone who has been affected by Blount's, or any other disease, to look at these sites and start connecting with other's.... Everyone has something in common! Everyone on these sites is looking for another person to share experiences with, or ask questions. 'Ben Has Blounts' has a profile on each of the sites listed under the "Connect With Others" tab. Let me know if you have any questions, or you need help! Let's start networking! If there is a site you think would be helpful, please email me at BenHasBlounts@gmail.com ... I'd LOVE to hear your ideas!