We have finally gotten to a new normal around here. I am a strong believer in routines...they make life so much easier. Hannah now only takes her braces off for 1 hour before bed. This time is used for bathing, running and expending all of her energy. It is amazing how light she is without the braces on! We enjoy this free time even more when we see the beginnings of progress. There is a notable difference. Both feet point forward and the bowing has decreased some. When the braces are off, we constantly have to direct her to sit with her feet out (instead of tucked under her and out to the side) so as not to "wreck her legs". She understands the concept of "making her legs better" so this is very helpful for us. She does have red pressure marks on both of the sides of her knees though which bother her at times. We have to be careful these don't cause her too much pain. The other issue we have encountered is that because she is wearing the shoes all day, we need to find a way to air out her shoes in the hour they are off. This is more difficult than one might think. We have used Odor Eaters foot powder, baby powder and lysol spray. These seem to help a little...as long as it doesn't become caked on. Our amazing little girl does not see her self as different. She receives multiple glances, compliments and the like from passersby regularly which seem to help her self-esteem. We are constantly encouraging her and have to fight our own frustrations and wants to help her all the time. She is 2 and wants to be independent so we do our best to allow this to happen safely. Especially since carrying her is proving more and more difficult every day with my growing belly! In the coming weeks we will attempt potty training and transitioning to her "big girl bed" in anticipation of baby in the spring. We shall see how it goes. For now, we can't thank everyone enough for their thoughts and prayers. We couldn't do this without God, our faith and YOU! :) Merry Christmas!!! :)

Hannah has now been wearing her braces for 23 hours a day. What a trooper! She still loves it when we take them off to bath her, etc. and will not sit still long enough for me to take a picture or video! She is finally getting back into her routine too, so I feel as though I have my little girl back.
She has developed some pressure sores on the outsides of her knees. This bothers her a little and we continue to massage her legs when we can. The specialist said this would happen but that those areas will toughen up....just like us I suppose!
I have come to the conclusion that perhaps Hannah was acting out in the beginning because it was a new experience for all of us and she was able to sense our frustration and apprehension. Now, that the experience is becoming more familiar, things are beginning to settle down for all of us.
We shall see what today brings!

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!

Happy Belated Thanksgiving!

I am truly blessed to have such a wonderful husband and daughter of which I am so thankful. We were able to spend the day with my in-laws who are wonderful. It helps all of us to be distracted so that we can forget about the braces, even if only temporarily. Our daughter seems to have a new bedtime routine of throwing everything out of her bed, crying, hitting, yelling and then finally calming down! She had not taken a nap today, but was in pretty good spirits because she got to spend time with Grandma and Great-Aunt Diane who made her some pretty cool bloomers to wear under her dresses.
I also realized just how important it is for me to get away from it all, even if only for a few hours. This gives me time to re-energize and appreciate her more. She went to sleep very well for me tonight WITH the braces ON...and in her own bed!!! Yeah! (Apparently, I missed the fuss just prior to my returning home!...Poor Daddy!)
We also received her new rubber over the shoe boots today. We were lucky to have found a place out of New York, The Camping Station, which still sells these boots in her size! We did have difficulty, as expected, putting them on (rubber shoes in rubber boots is a no go). We anticipated they would be difficult to get on...(I remember my own mother putting them on me as a young child and it was at times painful!) However, thanks to the advice of my wonderful Aunt Diane, we were able to place one of my nylon stockings over her shoe that enabled the shoe to easily slide into the rubber boot! Yeah! We are slowly learning the ins and outs of our new routines thanks to the help of our wonderful family and friends as well as trial and error.

Learning something new everyday....

So Hannah has surprised us again! She has now learned how to go down stairs...sort of. She sits down and then scoots on her rear. I found her this way yesterday as I was doing laundry downstairs and heard some thumping....this gave me quite the shock. I fear that she will hurt herself because she won't be able to stop herself from falling. I guess it is time to use the gate! She managed to keep her braces on for 10 hours so we will try keeping them on her tonight as well. I am fearful that she won't sleep well. Our routine has been one to be desired since getting her braces. She doesn't want to nap and then falls asleep before supper....she doesn't want to go to bed after taking her braces off either. She probably enjoys her freedom from the heavy braces that she just runs and jumps and spins.....and doesn't want to go to bed! We are hopeful that the sleeping and bedtime routine will return to normal (or a NEW normal) soon!

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.

The First Weekend

So our journey with Blount's continues. I wish I could connect with other parents to find out the tricks and methods they have used in dealing with the braces. Our weekend went well. Hannah is now wearing her braces for 8 hours and has only unbuckled them a few times. She has learned how to stand from a sitting or laying position too. I can't believe her strength and determination! She does not like wearing the braces though so we continually praise her and tell her just how beautiful she is. I want her to know that even if people stare at her or kids say innappropriate things, that we still love her and WE think she is still beautiful!

We went shopping on Saturday with Dan and Auntie Mary to look for clothing she could wear with her braces that would be comfortable and give us easy access to changing her diaper...(as this has been an unexpected challenge as well!) The top strap of the brace comes up too high on her thigh and we are not able to pull her pants down to change her without taking the entire brace off of her. We fear that if we take the brace off, that we will have to struggle getting it back on. It is also time consuming to get them on and off. So we are trying to devise a plan to make this easier.
We were able to find my pair of BabyLegs (baby leg warmers) that were given to us by a fantastic friend a few years ago. These Baby Legs are great! They provide a little barrier between the brace and her legs and keep her legs warm. Because they are kind of like a "crotchless pair of tights" (I know that sounds nasty!) they provide easy access to her diaper and we don't need to take the braces off! Yeah! So now we are all about shopping for comfy dresses she can wear with them and also possibly little bloomers to fit over her shoes. We also were able to buy some wider legged sweat pants that could fit over her braces (Baby Legs, braces, sweat pants) for the colder weather.

The other issue we encountered was nap time. She was always one to go to bed pretty well but not with the braces on....she refused to lay in her crib and nap even though she was clearly worn out. We have taken to laying her on the couch with us or in the lazyboy with us and she will eventually fall asleep. Poor girl. I can only imagine her feeling trapped in her crib because standing up in there with braces on would be difficult. How could she get comfortable laying in one position? Hmm....this will prove to be a challenge.

On Saturday night we took the braces off after 6 hours. When we did, she started dancing around like a crazy little girl. Wish I had caught it on tape! It was as if she enjoyed her freedom as she now could move about without the weight of the braces. We did notice that her legs did appear straighter though. At first I thought it was my imagination, but the others noted it too! Unfortunately this lasted for just a few brief moments before the bowing returned. But it was great seeing a little progress even after a few days! Yeah! Go Hannah Go!

Days 1 & 2

Yesterday (Day 1) I knew today was going to be stressful. I was going to be working a full 12 hour day today and was not going to be able to be with Hannah. This frustrated me because I felt as though my daughter needed her mother's protection and love as she is adjusting to this "new way of life". She has to wear the braces 23 hours a day, but we are slowly working up to that 23 hour day in increments of 2 hours more each day....(i.e. 1st day wear them 2 hours, the next 4, etc.) She is able to walk in her braces with a straight leg as she is unable to bend her knees. At times she is afraid to not hold my hand and at other times she wants to maintain her independence and "do it myself". Our walk over to the babysitter's house was a slow one but Hannah was very determined. I did not want to force her to be carried though (thus making the trip a ton quicker) as not to restrict her. She was able to walk on the sidewalk while holding my hand.
When it was time for me to head to work after dropping her off, she just stood and blankly stared at me as if to say "Why are you leaving me here like this?" She loves her babysitter and so do we! She is very supportive and always willing to help. This is a great comfort for us to know she will be loved and cared for in our absence. But nonetheless, I can't help but feel guilty about leaving her to "fend for herself". The look she gave me was so sad....it broke my heart. Will she be accepted as she is by the other children? Will she be able to laugh and play the same as always?
As a parent, you really hope your children do not have to face pain and suffering and yet these things are really just a part of life. So we learn to cope. Taking one day, one moment at a time until we move on to the next life challenge.
I discovered later that Hannah had managed to get her foot loose from her shoe, thus stuck in the brace. Smart little 2 year olds!
(Day 2- November 20th 2009)
Hannah was not too excited about putting her braces on again this morning. It seems to be a constant challenge to come up with new ways in which to make getting them on her easier and getting her excited about wearing them. "Let's show them to ______" Let's put them on while you watch "Nemo". Then I usually explain that these are designed to help her legs get better and the doctor said we should do this. Hannah is smart and thus I have always believed in explaining things like this to her in hopes she understands. She tells me that "it hurts". The braces buckle in 3 places on each leg so it has taken me some time to get them on her. She cries and I try to reassure her that "Mommy is sorry. Mommy is trying." She hugs onto me in fear and sadness and I continue to hold back my own tears. I think it is difficult to have to be the "tough one" but that it is also necessary to let her know that this is not a sad thing, and that she will get better soon so that is good. We truly have no idea for how many months or years she will need to wear these as they will be re-checking her about every 3 months to gauge her progression. We are hopeful that soon after baby #2 arrives in April she may only have a few months left of wearing them. Our orthosist informed us that one little girl recently treated, had a worse case than Hannah's and only had worn hers for 8 months. We are faithful people and are praying every day that our journey with Blount's will soon be a distant memory.
Hannah is now able to unbuckle one set of buckles....smart little stinker. Should have known that our daughter's fascination with buckles would prove to be helpful to her someday!

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.