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!

After Diagnosis...

After the diagnoses of Blount's Disease a family can expect to go and see an Orthopaedic Surgeon. This doctor is the one who will set you up with Physical Therapy. Sometimes the wait list to see the Surgeon can be up to 3 months!! My advice to parents would be to educate yourself as much as possible. Take notes, write down questions. If the wait is too long and you want to do something in the meantime; find out what Physical Therapist your surgeon works with and see if you can make an appointment with them. This way, you can perhaps get a jump start on any treatment options.

When you do go to any appointment; TAKE YOUR CAMERA!! Take pictures of the xRays; if you can take video of your child walking. These are good things to have as reference.

Here are some examples of questions you may want to ask your doctor & physical therapist...


~ How many Blount's cases have you treated?


~ How many cases of Blount's do you see in a year?


~Will my child be in any pain and/or discomfort?


~How should I treat that pain? ie Tylenol, ibuprofen, hot baths, etc..


~Where does my child rate on the "Langenskiold Staging"?


~Do you have any literature I can have to take home and read?


~ If my child didn't have "Blount's Disease"; how would you treat his/her symptoms?


~Is there anything else you think I should know?

If you are like me; sometimes after I am home I think of a million more questions. If that is the case, I suggest making an appointment to sit down and talk with the doctor. If they aren't available; get a babysitter and take lunch to the office!! Do whatever is within your power to do to be as proactive in your child's care as possible.

I know a lot of the families who have contacted me have appointments and surgeries over the next few weeks. I am thinking of you! Please keep me posted! Good luck!



Ben, January 2010



Tacarra's Story...

The other day, I got an email from a wonderful young woman named Tacarra. She has been struggling with the effects of Blounts Disease from a very young age.... Tacarra wrote this to share with all of you...

Meet Tacarra...

"My name is Tacarra I'm 20 yrs old and. I live in Milwaukee WI, I've had Blounts ever since I was 9months. I have Undergone treatments, far as having leg braces to physical therapy to having numerous  surgeries as well.. I even had a metal rod sticking out my leg at a point of time which was very painful... Blounts is rare disease. And it is also a challenge. I'm glad that I've have came across Kira's Blog site it has inspired me knowing that people like Kira actually do care about those that are suffering from Blounts .. I wish nothing but the best to everyone families. And I will include you all in my prayers Let's us all come together and support one another."



Much love Tacarra!

 
 
~ I would also like to add that Tacarra is working on her very own non profit called "Blounts Counts".... I am so inspired by her and I wish nothing but the best for her! Please send her some positive vibes; Tacarra has a knee surgery coming up that will help with pain she has from the after effects of Blounts Disease.
 
Here is the link to 'Blount's Counts'' Cause page... lets show some support for this courageous girl!!
 
http://www.causes.com/causes/219861

Sophie's Story...

The following was written by the family I have come in contact with in Australia... They are going through hard times right now; and really need support!

Meet Sophie...

“My name is Sophie and I’m nearly eighteen months old.  I live in Australia.  Recently the doctors told my Mum and Dad that I have Blount’s Disease.  Very few people in Australia have ever been diagnosed with this rare and complex condition and information is very limited.  Like Ben, I’ll have to undergo expensive and extensive treatment to help fix my legs so that I can grow up to be like most other kids.

Mum and Dad say that Kira (Ben’s Mum) has been really helpful and it’s given them someone to talk to about the condition and her experience’s with Ben so a very big thank you to Kira and her family.  Ben’s website has lots of information on the condition and it helps Mum and Dad know what to expect.  I’m hopeful that I’ll be able to have my own website set up so that we can also educate and help other parents of children with Blount’s.  I hope that you’ll be able to visit.  I’m also hoping that Ben’s and my website will be linked so you can read our stories.

If you can find it in your hearts to donate some money to our fund, please help.  Knowing that Mum and Dad will be able to give me the treatment I need will give them hope in what’s going to be a very difficult time for all.  I’m hoping that you’ll follow our stories.  Thank you for your support and kindness.  Sophie. "

This is Sophie's very own "Donate Button".... If you can give anything; it would be greatly appreciated! Sophie's family is going through a very hard time right now.

KAFO Brace...

Well today we made our way down to 'Western Slope Orthotics' to meet with John Morris. He is a super nice guy; and doesn't seem to mind my incessant questioning. The new KAFO brace wasn't as scary as I thought it would be. Still, it was quite emotional, and I found myself ready to cry. Ben wasn't very happy to have a new brace; he kept saying "brace off!" After we had it on and went over how tight to have which straps; we let Ben walk for the first time with it on.... By the time he found the toys he was happy again!


Ben watching us put on the brace.... not very sure what he thinks yet...




This is a close up of the brace right at the knee...




The brace at the foot...




Ben's entire leg in the KAFO Brace...

We have our next PT appointment next week. Hopefully we can figure out how to use this brace in conjunction with the Thera Tog. John, our Orthotist, is going to meet us at Physical Therapy so that the three of us together can figure out what the next step is for Ben. Until then; we are going to be putting Ben in the KAFO brace for a few hours in the morning; and then again in the afternoon so that he can get used to it. By the time we go see Lisa at PT; he will be in it full time. He may even be sleeping in it at some point.

I took a short video of Ben walking in the KAFO Brace for the first time~

Thank you to everyone for reading and helping me share Ben's journey. It means SO much... Keep sharing! Keep reading! You are helping my little boy just by reading my blog.... So again, THANK YOU!!

An Exciting Week...

This has been a wonderful week! I have stayed in close contact with the new family who found me. They have a daughter who is 17 months old who has just been diagnosed with Blount's Disease. We have been emailing all week long; sharing our stories and talking about our little ones. It is so refreshing to have someone who knows exactly how I feel; and who has all of the same fears I do.

Unfortunately, the family lives all the way in Australia! So I may never actually get to meet them. Also, the part of Australia that they live in, has been severely flooded; causing an extra financial burden on their household; including Mom, Dad, and four children.

I decided to see what I could do to offer support. Knowing the in's and out's of Blount's Disease, their daughter will no doubt need the use of a Thera Tog Brace. As with Ben; this is most likely the very first step in her treatment. After making a few calls to the Thera Tog team; and even to a WONDERFUL woman who runs 'MileStones Therapy' in Sydney Australia, I believe that we have secured a brand new Thera Tog for this family to have; free of charge.

I have been in the best mood all week knowing that I could be a part of something so great! Everyone I talked too was so amazing and helpful. Thank you Thera Tog! Thank you Erikka at MileStones Therapy! And a special thank you to Patrick Mahaffey at Thera Tog; he is the one who told me who to call to make this happen. I hope this is just the beginning; and that I can find a way to help more families. I am So thankful for the friendship I am building now with the family in Australia.

Ben gets his KAFO tomorrow!! I'll post again soon!

Here is the link to MileStones Therapy in Sydney Australia

http://www.milestonestherapy.com.au/

A Hope Fulfilled...

Today... I checked my email; which I have not done in a few days. There were TWO emails from parents whose children have Blount's Disease! As soon as I read the first email I started crying. I always knew I would make contact with another person struggling with Blount's. I just always expected that it would be an older person; someone who had Blount's as a child, or who had Adolescent onset Blount's. Both of the emails I received were from parents of children who have Infantile Blount's. I probably cried for the better part of an hour; and even now thinking of it I could cry some more! It means so much to me that there are parents out there who I can finally talk too... finally know about their journey... and finally be able to help someone at the beginning of their journey through Blounts. Thank you to everyone who viewed my blog and passed it on; and please continue! The day that there is a network for Blounts Disease is within reach!

On another note~

I got the call yesterday that Ben's KAFO brace is ready! We go in next Monday to fit it and make sure it's going to work. I will be sure and take pictures to share. That is one thing I am going to start doing a lot more of.... Taking pictures and videos. If you are a parent of a child with Blount's Disease, that is one thing I would urge you to do. Take videos of your child walking up and down a hall. It's hard to see the progress sometimes; and if you have a video to look back on, it is so much easier to stay motivated!

Getting Fitted For The KAFO Brace...

Yesterday we went down to get Ben fitted for his new KAFO Brace that we will use on his left leg. I was so nervous! I was completely prepared for him to be difficult; because I knew that he would have to hold still... But to my amazement, HE DID AWESOME!!

So earlier this week I put a call in to our Orthotist so that we could get Ben in for his fitting. I was told that there wasn't an opening until February! Well I knew that we couldn't wait that long... So I begged pleaded and bribed! Thank goodness for wonderful people who understand the process! We were able to get him in the very next day. So Ben and I went and picked up lunch to thank the staff for squeezing us in.

Ben was not too happy about being there. "Hold you Momma"..... for about 20 minutes. John Morris, the Orthotist, asked if he could take a few pictures. He said that he had only seen "true Blount's" a few times. I have to admit, a part of me hurt; but I of course let him take pictures of Ben's legs; you never know, maybe it will end up helping someone else. We tried putting Ben up on the table a few times and he wasn't having it! So we bribed him with a bread stick from the lunch we had brought, and that did it... he was content, and John got to work...



Wrapping Ben's leg with fiberglass...

Because the KAFO Brace will go from the tip of Ben's toes all the way up to his hip.... they had to wrap his entire leg. It will take almost 3 weeks for the brace to get in. And we got to pick from a variety of patterns; we picked "Ocean".

The Entire Cast of Ben's Leg...

The whole process took about 45 minutes. I'm so lucky that Ben did well, who knows how long it would have taken otherwise. When it was time to leave Ben cried because he wanted to stay; and when we finally got to the car, I started to cry. I was so prepared for it to be a huge struggle, I had all of my strength set aside and had focused on the expectation that we would have to hold Ben down and force him to be still... I guess since I didn't have to "be tough"... It all just came out. My kids amaze me everyday. Watching Ben do so well; and still be a happy content little boy is overwhelming; and I am so grateful.

Best in The Business!!