Almost 2 months with KAFO braces!!

Wow! The time has gone by so quickly. Hannah is doing far better than we ever could have imagined. She is able to get around pretty easily in her braces and continues to wear them 23 hours a day. She doesn't complain about having them on, but smiles brightly when she gets to take them off and run around for an hour! We had our follow-up appointment with Hanger yesterday and were told that she is doing well and that they even consider us "model parents". I was glad to hear that our hard work and struggles are making a difference. The orthosist even asked us where we got her leggings that she wears under her braces. We were happy to recommend BABYLEGS to other parents as they have really helped in keeping Hannah comfortable and warm while wearing her braces. The Supersoft babylegs are working great in this colder weather, they do not leave indentation/ crease marks on her skin, and feel so soft. We have tried cutting off girls' knee high socks but they just don't do the trick. I would highly recommend them to any child in KAFO's!

We have also discovered an advantage to KAFO braces. The braces are able to slow her down just enough for us to be able to keep up! When we take the braces off, she is on the GO...climbing, jumping, etc. and getting into trouble! Also, since transitioning her to her "big girl bed" she is not able to get out of bed with the braces on so this makes it more difficult for her to play with her toys and cause trouble when she should be sleeping.

We have also hit a milestone mark....Hannah has now gone an entire day (including naptime) without wetting her underwear! She is even able to sit herself on the little potty chair with the braces on! She is truly amazing. We are so excited that we are turning a corner here as well and may only have 1 child in diapers at a time!

Please continue to pray Hannah will not have to wear these braces forever....we have seen initial progress, but progress has slowed and there is no way to know how it will progress at this point. We plan to ask the Orthopedic specialist at her next appointment just how long she may have to wear them in order to maintain the progress she has made. We would hate to have come so far only for the Blount's to take over again. We really would not want to opt for surgery in the future so please continue to pray for us as we discover what lies ahead.

Potty Training and then some!

Our holidays this year went by very quickly! We got to visit with family and friends and even exchanged gifts...including the flu! Yep. Hannah had never gotten sick with the flu before, so this was a new experience...especially with the braces on. We decided it was safer and more comfortable for her to not wear them while sick...clean up would have been difficult. Funny thing though, she missed having them on! She asked for them even though she was still sick. Amazing. They have become a part of her. Don't get me wrong, she truly is excited for that hour in the evening she can run free! Progress appears to be at a standstill for the time being, but we are still hopeful it can be corrected by summer. Our next appointment with the orthopedic specialist is coming up in mid February so we will see what they have to say. Her left leg is still much worse than her right. They may suggest one brace to correct this, but we will have to keep praying and waiting. Patience has never been my strong point, but I am hopeful the Lord will take care of everything.
Now that Hannah is 27 months old, I want to start potty training. She is asking more and more to wear underwear or pull-ups vs. diapers so we are giving it a try. So far today, she was able to tell me twice that she had to poop and we made it to the potty!!! This is exciting. It is difficult for her to run with the braces so peeing on the potty has proven to be a struggle. I have changed 2 wet underwear today. Oh, well. We will see what happens. Having 1 child in diapers at a time would be great!!! Wish us luck. 102 days until Kasten #2 arrives!

Finally we are getting somewhere!!!

Lately putting Hannah in her carseat has been a challenge. She refuses to be buckled in...hmm...is it because her legs are already strapped down that she feels like a prisoner??? Hmm...I wonder. She also exclaims "mommy do it"...such as carry me, hold my hand, help me. This is a new behavior for her as well. Not sure if mommy is the softy or if it is because mommy is pregnant and she senses that mommy won't be able to continue doing these things for her as often.
Hannah also saw her orthosist and her orthopedic specialist today for a 2 week follow up. The doctor stated she looked fine walking in them, but as always the meeting was quick. We asked about the time frame that we are looking at, and of course the answer is "we will continue to monitor her progress and see her in 3 months." The doctor explained that Blount's is a growth plate issue and that it is good for her to hit a growth spurt while wearing the braces in order to speed up correction. We also noted that her Blount's is more pronounced in her left leg and that she may need to wear that brace for a longer period of time. The orthosist also mentioned that we would be able to buy her another pair of shoes to interchange with her current pair and it would only cost a small fee for them to design the second pair. Maybe a pair for bedtime and one for outdoors? Maybe a pair for dress and a pair for play?? We will have to see what we can find.
The prostetics office was also much more helpful this time...I left there feeling like we had finally gotten through to them! We met with the Marketing regional director too who apologized for assembling the braces incorrectly the first time too. The orthosist also asked if we had located any support resources which I stated we had not. I then asked him if we could connect with other families they have treated and he hesitated saying there weren't too many families as attentive as we were, but that he would check with his collegues. I thanked him and let him know that we would be ok with them giving out our name and number to others who may prove helpful. We shall see where this leads us. Thank you to everyone who has been supportive over the past few months. We truly appreciate your thoughts and prayers as we couldn't get through this alone!

No nap for Independent 2 year old!

So today I got an unexpected day off of work as our babysitter had a sick child to tend to. I was actually excited not to have to complete the morning mad rush before I headed to work. Trying to get a 2 year old to get dressed quickly in the mornings can prove quite difficult. She is now exhibiting more of an independence than I have ever seen. She must feel so out of control or restricted wearing the braces that when she is out of them she runs free and does not want them back on. Sleeping has proven to be a challenge. She doesn't want to lay down for her naps anymore. (I can't imagine she could get too comfortable with the braces on!) So she then is more tired and crabby than usual. She also wants to spend more time seated and watching television, movies, etc. I attempt to keep her more active but I am sure she tires easily with the extra weight of the braces. I really feel for her and don't want to encourage these "bad habits" but I am not sure what else I can do for her to keep her active. It is a constant challenge for me to keep upbeat and positive with her when I just want to SCREAM at her for being difficult...screaming, whining, etc. I know that it is common for 2 year olds to act out, but I can't take much more stress and change right now.
Right now, I am hoping and praying for the strength to adjust to our new routines.

Journaling our Journey with Blount's

Ok, so I decided to finally start a blog. One of the main reasons for this is that I realized that there appeared to be very little support resources available for children diagnosed with Blount's Disease. I want to create a journal of our experiences to share with other families of children in order to assist them on their journey. My hope is that they may find comfort and support in knowing there are others out there who have gone through this and have survived to tell their story. I know that may sound dramatic, but as a parent whose child has been recently diagnosed with this disease, I have found it very difficult to find the support from other parents of kids with Blounts.

For those of you unfamiliar with Blount's Disease it is a bowing of the legs that can get progressively worse if left untreated. Most children, when first learning to walk DO have a slight bowing of the legs. Within a short period of time, the legs SHOULD straighten out. In our case, it did not, thus the diagnosis.

We first discovered something wasn't quite right when Hannah was 18 months. She had learned to walk a week before her first birthday. Nothing unusual there....she was right on target.
But by the time she was 18 months we suggested (on the advice from my wonderful MIL) to ask the doctor about the slight bowing of her legs which we had noted. Our pediatrician did notice it too, and referred us to an orthopedic specialist at Children's Hospital.

We made our first appointment with the orthopedic specialist at Children's shortly thereafter. He took x-rays of both legs and told us that it COULD be Blount's Disease, but he thought it was something slightly different called Interior Tibial Torsion. He told us that she would most likely outgrow this condition (ITT) and told us to come back for a re-check in 1 year.

We saw the orthopedic specialist in October 2009 (right before her 2nd birthday). Going into this appointment, I assumed he would tell us more of the same...(just let it fix itself she will outgrow it). They took x-rays again (and our amazing little girl did so well, even if mommy wasn't able to be in the room with her as not to hurt the baby inside mommy's tummy!) To my surprise and dismay, the x-rays showed an increase in the bowing. The orthopedic specialist then told me she probably would NOT outgrow this condition and that she would need braces. He never mentioned she had Blount's Disease to me. He wrote out a prescription for KAFO (Knee Ankle Food Orthotics) braces and directed me to a place within Children's Hospital called HANGER othotics to get fitted for them. It wasn't until I looked at the prescription that read clearly (imagine a legible doctor's handwriting!) Dx: BLOUNT'S. I was dismayed to say the least....a LABEL. Ok, so now what?

We make an appointment with HANGER a week or so later. They then take a cast of both of her little legs...of which she finds uncomfortable...especially when they are sawing the casts off of her with a loud cutting tool! Like most 2 year olds she does not like to be restricted. But needless to say, we were able to calm and sooth her. The HANGER Orthosist then tells us that they are awaiting insurance approval before they can proceed but that it should be approved within a week. We are also told that the braces do not come with shoes and that we would need to purchase a pair of high top, lace up, harder soled shoes that would be fitted with the braces. That shouldn't be too difficult, right??? WRONG!!!

Our search for toddler shoes that fit this criteria was very exhausting!!! We spent countless hours contacting local retailers, searching the internet, etc. and became frustrated when our searches were unsuccessful. I talked with our pediatrician for suggestions on retailers and was unsuccessful, we talked with a pediatrician who is a family friend....unsuccessful. We talked with the orthosist at HANGER orthotics....no help. I searched a local mom's network website for suggestions....no help. It seemed that no one out there has ever had experience with this before!! I felt so alone. I felt so exhausted. I didn't think that this was supposed to be the hard part. I figured getting my independent 2 year old to wear them was going to be the DIFFICULT part!!!

We also contacted HANGER orthotics the next week to see if they had obtained the insurance approval. They had not. So I contacted my insurance company to check on the status and the insurance company stated they have no record of anything ever having been submitted for approval from HANGER. I then called HANGER back to inform them and verify that it had been sent. They stated their computers were down and that their files did indicate it had been previously sent, but that they would resubmit the paperwork ASAP. Hmmm....ok??? Hmm....not sure what was the hold-up then...

I waited another week before contacting the insurance company. They still had no record of a submission. Hmm... I immediately called HANGER orthotics to inform them yet again and was told that the person I needed to speak with was unavailable until the following week.
This got me very upset, but I remained outwardly calm. I do not like being the "squeaky wheel" but I was feeling like I was getting the run around. Finally, I called the Orthopedic office and informed them of my experience and frustrations. The receptionist there was very helpful and got me the answers I needed. Lessons learned..."The squeaky wheel DOES get the oil!"

So now we are able to get the orthotic braces. We make an appointment to pick them up and get instructed on how to use them only to find out that they were assembled incorrectly and we would need to reschedule. ARGH!!! SERIOUSLY!? Glitch after glitch after glitch.

So we finally got the braces 3 nights ago. Hannah is doing surprisingly well! Better than expected and better than her mother!!! She is so strong and truly an inspiration. She is unable to bend her knees so climbing is difficult. I am sure she is worn out by the end of the day, but she continues to have more strength than I ever could have imagined.