"Special Needs"... Maybe An Advantage...

We are still waiting to hear back from Western Slope Orthotics on when Ben's new KAFO Brace will be ready. In the meantime though, I have a few things to share...

I'm putting together pamphlets with the help of my friend Amy at Absolute Edge Design Company. She has been nice enough to donate her design services. So soon enough I will have 'Ben Has Blount's' pamphlets to hand out at various places. I am also going to be sending out the pamphlets to try and really spread the word. If anyone can think of a place; or has a place that could offer the pamphlets, please contact me.

Also, I have been a little stressed out knowing that next year Ben should be starting preschool. His big sister goes to a WONDERFUL Montessori School here in town and I really want him to join her. I had a few reservations as far as, would the staff be comfortable helping him his braces... will he be potty trained in time...and of course, how will we pay for two children to be in Preschool??? After talking with the staff at the Montessori School; I was put at ease. Everyone there is showing an interest in Ben and how he is doing. I also learned that because Ben is considered "Special Needs" now, I can probably get him into school through the 'Child Find' program.

So maybe "Special Needs" isn't as awful as I thought last week... Maybe everything is finding it's own way of working out. Maybe Ben can start preschool next fall and be a "normal" kid... And Maybe by then we will have more information about Blounts Disease, and maybe even have contact with another family affected.... Lots of Maybes

For More Information On The Child Find Project... You Can Visit...

http://www.childfindidea.org/

Contact...

I want my Reader's to know that the reason for this blog isn't only to raise awareness for Blount's Disease. I DESPERATELY want to network with other families who are affected by Blount's.

I haven't yet met one other person with this Disease.

If you have any questions, or if you know someone with Blount's....Please contact me!

My Email address is KiraHudson82@bresnan.net

Why Donating Is SO Important...

Recently I started receiving donations for the 'Ben Has Blount's Medical Fund'... Thank you thank you thank you!!! I wanted to break down a few of the costs that are related to Blount's Disease; so that you all know why donations are so very important...

~Every time we go to the Orthopaedic Surgeon it costs around $350; right now we are going every 8-  12 weeks

~We go to Physical Therapy once a month, and it costs around $300

~ The 'Thera-Tog' Brace that we have been using costs roughly $600

~ The KAFO Brace that we just got fitted for, is going to cost us over $3,000

Keep in mind that Ben only needs the KAFO on one leg right now. This brace will last us approximately one year. These are our costs just since Ben was diagnosed in October 2010. I didn't add the numerous other expenses we accrued from seeing other specialists and buying other braces before we received the correct diagnoses.

Our family is lucky enough to have insurance and a Health Savings Account to cover most of our costs. Right now my focus is too raise as much money as possible and give it to other families I hope to have contact with in the future, I can't imagine finding out that your child has Blount's and not be able to give him or her the treatment they need. I am also working on getting a non-profit tax ID number so that future donations will be tax deductible for those who donate.

Thank you so much to the few people who have donated already! I promise to use all of the donations in the most effective way. If we are lucky, and things keep going well for my family; we will be able to use 100% of the donated money to help another child or children... Again, THANK YOU SO MUCH!!

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!!

Now Accepting Donations...

I am really blessed to have WONDERFUL friends & family who have been so supportive and helpful. After a conversation I had yesterday... I decided to put a PayPal Donate Button on my blog. Any money that this account generates will go first to Ben... and then to other kids that need help. The money will be used to help pay for leg braces, physical therapy; and if need be, surgery. I also want to add that ANY braces that we buy for Ben; will be donated after we are done using them. If you, or anyone you know needs help with medical expenses accrued because of Blount's Disease; please contact me. I would be glad to help in any way I can!

Thanks So Much!

~Kira

Our 2nd Appointment with Dr. Deering...

I don't know about you, but whenever I am at the doctor's office I get into this crazy mode where I am really focused on what I need to ask because I always feel rushed. Most of the time I forget something; and it's just a mess....

So here I am in a daze, focused.. and its our turn. The intake nurse didn't know anything about Blounts disease and nothing of the Thera-Tog braces... I was patient because this is such a rarity; he probably will only see it again a few times in his career. We head back to X-Ray; and for some reason Ben was not cooperative this time. It took myself and another technician to hold him down. It was sad; but I'm usually okay with those kinds of situations. It has to be done for him to get better. Finally we get to see Dr. Deering, and I remember how much I like her! She is in NO way rushing me... we are having conversation about Blounts, and treatments, and she took the time to answer all of my questions. We looked at the x-rays, and it was pretty obvious to me, that Ben's disease is causing more damage to his bones.

This is a diagram showing the metaphyseal-epiphyseal changes in the tibia...

These are Ben's X-rays to compare from our last two visits...

 

October 2010



January 2011



For Ben, his left leg ( which is on the right side of the picture ) is much more severe than his right. And it is obvious to see that just in the past 3 months, the shape of his bones have changed. Although Ben is walking better, his rotation looks better... Thanks to the Thera-Tog! It's hard to tell what's going on on the inside though.

So after examining the X-rays; we decided to use a KFO brace on Ben's left leg; but still continue to use the Thera-Tog on both legs. The KFO, also called the KAFO brace, will start at Ben's hip and go all the way down into his shoe. It's also a very unique brace in that, it will be specially made for Ben. We are going this week down to an Orthodic Specialist to get a cast made of Ben's leg, so that we can special order the brace. It will take about 3 weeks to get in.

I also talked to Dr. Deering about adding a Vitamin D-3 supplement to Ben's diet. I"m still doing research; but it is supposed to be the very best thing for bone growth. I went to the natural foods store in my town and was able to find the D-3 in infant drops.... one drop a day... every little thing helps at this point.

While at the appointment we also decided to donate Ben's old Wheaton Brace. Given that we can't use it to treat Blounts, and they are pretty expensive. I'm sure that it will go to a child in need.

So the next step in our journey through Blount's Disease is to get the new brace! I will post pictures and keep you posted through this next part of the process!

Feeling A Little Anxious...

Just a few more days until our next appointment with our Orthopaedic Specialist... Ben's appointment is on Friday. After our last PT visit I started feeling pretty angry! We didn't find out anything new... everything that is happening, we have known about for months. So why am I so agitated?

Everything is just starting to get very real. I am frustrated because there is limited information on Blounts; because I still haven't found anyone else that has been affected... because Ben will never have "perfect" legs... I could go on and on. Then, I start feeling guilty for feeling pissed off. "I should be grateful that Ben and his sister's are healthy otherwise".."Should be grateful that at least this isn't life threatening"... I know we are lucky; I just don't like that the process of Blounts is SO slow going; and that I don't know what to expect. I think the thing that bothers me the most is that Ben has "special needs"... he is categorized now. Not that there is anything wrong with children that have special needs. I almost feel like if he had a learning disability, or something else that wasn't so obvious, I would deal with it better. Knowing that the new braces he is going to get are going to be so much more noticeable... And now that Winter is here; all I can think about is Spring and Summer; when Ben will be running and playing outside; wearing shorts, kicking balls and building sand castles... all with big clunky braces?

Well, now that I got it out there, I'm sure I'll start to feel better. Most likely after Friday we will have a plan; and that will make me feel more certain on what lies ahead.  

Ben's Fourth Physical Therapy Appointment...

We have been going to see an amazing Physical Therapist named Lisa for 3 months now. I love that every time I ask Ben if he wants to go and see Lisa he says "Mmm hmm...pizza!". Cracks me up! We are lucky enough that Lisa helped design the Thera-Tog brace that Ben has been using to treat his "in-toeing" caused by his Blounts Disease. It is a really unique brace that is fairly easy to use once you get the hang of it. I was really nervous at first though. We are using the Thera-Tog to "train his muscles, to train the bones"... So far it is working.

I'm gonna start from the beginning now~

In January 2010; we really started to notice that there was something unusual about Ben's legs. We knew they were bowed; but something else was off. I even thought for a short period of time that perhaps Ben was a 'Little Person'; and even asked my pediatrician. Every time I asked our doctor's about Ben's legs; they always said that he would grow out of it. Luckily, my mommy instinct told me something else was going on.

      X-Ray of Ben's Left Leg



By July 2010; I really was to the point where I wanted a second opinion. Ben's legs were drastically changing and I didn't want to wait until our next pediatric appointment. So I looked in the phone book under orthopedic specialists and started calling around. One doctor came highly recommended; so I made an appointment for the next available date which wasn't until OCTOBER!! Then I decided to call a different doctor; a Foot and Ankle doctor, and we got an appointment for the next week. We went to the appointment; they took x-rays; and it was obvious that Ben's left leg was much more "bowed" than his right. So after a few more appointments they fitted us for a "Wheaton" brace for his left leg; which was only to be used while he was sleeping. We did this every night for almost 3 months.



A picture of the entire Wheaton Brace









In the fall; I got a phone call to remind me of our appointment with the orthopedic specialist. I almost cancelled it. In my mind; we went to a doctor and we had a treatment... so what was the point? I am SO SO very glad that we went anyway!!! The best decision I made all year!!



This is the X-Ray taken at the Ortho Appt.
You can see the difference in his legs,
the left is much worse



Within a few hours, we saw the doctor, got x-rays, had a new diagnosis, and were set up for physical therapy. I was scared to death; but so relieved that there was actually something wrong... something we could fix. But I had no idea how long, and slow moving the process would be. Blounts Disease... so rare; so hard to find any information, and so sad that my little boy, not even 2 years old would have to face the next few years with different braces, and maybe even surgery..

This is a video of our 2nd P.T. appointment.... I am learning how to put on Ben's new Thera-Tog Brace





The first few days at home with the Thera-Tog Brace were a little difficult. Ben was amazing and patient; thank goodness. Every time I put on the brace I had to watch the video we took to make sure I was doing it right. Because Ben is still in diapers; we decided to wait until after his morning poop to put on the brace. So he wore it from about 9a.m.-12p.m.; then we took it off for nap time; and again after nap until right before bed. I have to say the first month was pretty easy. I was motivated and Ben didn't seem to mind the brace as much as he does now. Of course now he is 26 months old and he can say.."Help you, Brace Off?"... Breaks my heart every time.



Today at P.T. Lisa was really happy about Ben's progress. He has gone from literally tripping over his feet when walking to walking with his toes almost completely straight forward; with the brace on of course. Even without the brace though, his gate is really improving; he no longer swings his leg way out to get it in front of him while walking. We go and see the Orthopedic Specialist next Friday. We will find out then what the next step is. So far we have it narrowed down to either a KFO, or an AFO brace to be used in conjunction with the Thera-Tog. I'm really anxious to see the new x-rays... and very apprehensive on how Ben will deal with larger, clunkier braces.





Benjamin Has Blounts Disease...

My name is Kira; and my son Ben has been diagnosed with Infantile Blounts Disease.

Blounts Disease is a rare growth disorder also known as 'Tibia Vera'. Only 200,000 people in the United States have been diagnosed. There are two types of Blounts, Infantile and Adolescent. Treatments can range from bracing all the way up to surgery.

I really wanted to start this blog because there is not a lot of information out there. When my son was diagnosed a few months ago, one of the first things I did was look up 'Blounts Disease' on the internet. Unfortunately there was barely any information; and what information I did come across, was scary as Hell!

Because Blounts is so rare; there are no support groups; no forums (that I can find), there is no one that I can email; or get in contact with that has their own experience to share. I am going to start documenting Ben's journey; in hopes that someone out there will do as I did; and research Blounts on the internet. Maybe we can find eachother and finally have someone to talk to about this very confusing, very complex disease.