Update

Thank you for the many thoughts and prayers....some progress has been made. Hannah saw the orthopedic doctor and orthosist yesterday. In February her bowing/ growth plate measured 15% off. She now measures 11% off. Therefore, we are making progress. The orthopedic doctor has allowed us to take her braces off for bed and swimming or other such activities. She does have to wear them during the day when she is weight-bearing. This is somewhat of a relief although I wished it could be the other way around! But one must stay positive even with a 2 year old who is exercising her independence by strongly requesting "NOT to wear braces ANYMORE!" It is a struggle but we have been blessed with supportive family and friends through prayer, friendship and encouragement. The doctor also informed us that Hannah will not need to wear them longer than 6 more months. Our next appointment is scheduled for the end of October. At this time we will cease wearing the braces so she can be a normal kid. However, this does not rule out future surgery. We will cross that bridge when we get there.
We also received our second pair of shoes as the Nike's have seen better days. We decided to go with a K Swiss brand and hope they will work well. The orthosist also suggested cutting down a Dr. Scholl's insert and replacing the insoles when damp as this has been an on-going problem. We will give it a try.
As always thanks for the support and kindness you have all shown. We will keep you updated.

Big Sister Hannah

Has it really almost been a month since my last entry? I guess we HAVE been a bit busy lately! On April 21st we welcomed a new baby girl into our family. Big sister Hannah couldn't be more proud or more motherly to her new sister. As of now baby sister appears healthy but knowing what obstacles we have encountered with Hannah and the fact that Blount's could be hereditary, we won't be "in the clear" until baby starts walking. I am trying not to focus on what COULD be though because there are so many things that a person can be faced with throughout his/ her life that can't be detected upon birth. So we remain hopeful.
Along with the arrival of her new sister, (and the changes in routine that go along with that!) Hannah has been requesting that her braces come off more frequently. We continue to maintain our routine though as best we can (we have a set time she can take her shoes off). She has also put up more of a fuss when we have to put the shoes back on. We try to stay positive and upbeat, but the truth is that I don't blame her for not wanting to wear them anymore. I also find it easier (especially with the arrival of a newborn) for Hannah to be more independent with walking, climbing etc. when she is not wearing the braces. The other night I took her to the grocery store (without braces) and we were able to make a much faster trip as she could practically out-run me! (This is important when you have limited time to return home for infant feeding!)
Hannah also has been tripping and falling more frequently when in the braces. Not sure why this is, but her falls have been rough leaving her bruised and sore. We have our orthopedic appointment this afternoon and I guess the best I am hoping for is that she can cut down on the amount of time she needs to wear the braces everyday. Please continue to keep us all in your thoughts and prayers as we pray she will be out of the braces soon!

Warmer weather has arrived....but so have some new obstacles!

Warmer weather has arrived (if only for a short while!). We are excited to be anticipating the arrival of a new baby brother or sister for Hannah soon. She is still working on potty training...pull-ups to underwear and back to diaper!!! What makes things difficult is that she is wearing her braces when accidents occur making cleanup tons of fun! Her shoes need to meet with the hairdryer often. I feel as though we are rewarding her for peeing by taking the braces off to clean them. Other methods of rewards have not yet worked. She knows what to do, she just has to WANT to do it more consistently.

The warmer weather has got me thinking about just how HOT she will be in her leggings, socks and shoes this summer. We are already having moisture issues with the shoes, often times finding the foot powder (to keep them fresh!) caked onto the insides of the shoe (esp. the hard to reach toe area). We find this difficult to keep clean and dry as she is more active now running around outdoors too. I still utilize the Tingley rubber boots, but find that this too may be contributing to excessive warmth and moisture. I still want to keep her shoes clean when she plays outdoors, but haven't yet figured out the best solution. I have purchased and made my own thinner leggings to help her cool down, but feel awful making her wear the braces in the heat.
I have not noted as much progress as I would have liked with her left leg, and may have to ask the doctor for alternative suggestions when we go back for a visit in late April. I wish the specialists could be more helpful in providing suggestions, hope or alternatives. We will continue to keep you posted. Any input and suggestions you might have for us would be welcomed! Thanks!

We were able to locate a stroller....hopefully one that will accommodate the every growing Hannah! It has the option of a sit-n-stand and also allows me to see baby in the carrier...many models have the baby in front and toddler in back.... I am hoping it will suit our needs. I have tried it out with a toddler and preschooler and it seems to fit them just fine.

Lately, I have been having difficulty with Hannah's plight. I am happy she is able to get around in her braces and it does not stop her from "Hannah do it." I am just concerned once baby arrives just how many hands I will have to care for 2 children. Hannah needs help with climbing which usually means I carry her (out the front door, onto her chair, etc.) The struggle for me is that I KNOW she is capable of doing all of these things WITHOUT the braces and it scares me to think I will not be always readily available to her once baby arrives. I know having a baby in the house will be an adjustment anyway, but as with everything else, it is the unknown that is frightening.

At times like this, I wish I could rely more on family and friends to lend a hand, but this is not possible for us right now. I pray for a break from this stress and hope that our next ortho appointment at the end of April will show that Hannah's Blount's Disease has made progress. I want to see the "light at the end of the tunnel." I want to know that she will not be wearing these until she is 8 years old and ready for surgery.

Continue to keep us in your thoughts and prayers as we continue to adapt to the changes ahead and hope for good news.

Potty Training???

So we had been working on potty training with the braces on for a few months. We were excited as she seemed to like wearing her underwear and getting praise for going on the potty chair. I was thinking she was well on her way and would be trained by the time baby #2 arrived in April. At this time, it does NOT appear to be going as well as it did at first. She does not tell us when she has to go, will sit in her wet/ dirty underwear, and does not seem excited to receive the praise for going as she once did. She DOES like to wear underwear (which because of the braces, we have had to cut off of her when she wets/ dirtys them to avoid more mess on the braces!) I have tried telling her she can wear the underwear ONLY after she goes on the potty chair, but this has not been enough to motivate her..... much to my frustration!
It is wonderful that the snow is melting and the sun is shining....Hannah loves the outdoors and we even ventured out (utilized the Tingly Rubber Boots over the braces!) which worked wonderfully! Now it is off looking for a stroller that will accommodate a toddler that can't bend her legs to put them on a footrest! This may be a challenge, but I am hopeful!

Three Month Checkup

So today we went in to the orthopedic specialist to check on the progress we have made these last 3 months.
The meeting was short, with few promises "I don't have a crystal ball" was all the doctor could do for us as far as how much longer he would suspect she would need them. The X-rays taken have shown us a marked improvement over those taken 3 months ago. This is the good news. The doctor was still concerned that her right tibia is turned inward 5 degrees and her left tibia is turned inward 15 degrees. Hopefully the additional pressure of the brace will correct the left tibia growth plate. She will still need to wear the braces on both legs for an additional 3 months (23 hours a day) until the doctor can reassess. So bottom line is that there has been some progress made, just not as much as we would want. The doctor didn't want to speculate too far into the future so he couldn't give us much of an outlook at this time. We would appreciate your continued support and prayers as we go through the next 3 months (and hopefully get the news we want and need to hear!)

As you can see, Hannah is making some progress. I took this picture so that we can note the progress that is being made. Her left interior tibia still bows in a bit, but her foot is now pointing forward. I wanted her to stand up as straight as she could for the pictures, and this was the best I could get. Keep us in your thoughts and prayers. Our next appointment with the orthopedic specialist is this coming Thursday. Hopefully they can give us a better timeline in which to work towards. We will just have to wait and see....

Hannah has been making progress....and appears to be learning how to get around well even with the braces. She has mastered potty training, somersaults, climbing up stairs and now can TAKE HER BRACES OFF! Yep. She managed (the other day when she was supposed to be napping) to get her entire brace and shoe off! I found her in bed with one brace and socks lying next to her bed. Crazy. I had even double knotted the shoelace. She is so smart and watched us so carefully that she mastered this as well. Now we have to keep a closer eye that the braces actually stay on.

I know I have mentioned my frustrations with Hanger (the orthopedic equipment supplier) in the past, and I would just like to say they have once again managed to fall short of expectation. I received a notification in the mail the other day asking me to back date a form stating that I had received another piece of equipment from them in order to allow us to switch shoes for her braces. We had never received this piece of equipment so I was not going to back date any forms! I called them and was told "oh, yeah, just disregard the form." Then the following day I received a voice mail that stated that they needed this form signed! ARGH! I wish they would communicate in that office better. I so wanted to tell them so, but didn't get the chance. When I called them back to follow-up, the guy didn't give me the opportunity to yell at them...he had realized his mistake.

Even though Hannah is doing better with her braces, I can't wait to be done with them! I know that sounds bad, but I want my little girl to have more freedom, I want her to be able to crawl around on the floor like the other kids, etc. I look forward to the one hour a day when she can be free and I can pick her up and she can wrap her little bare legs around me as I hold her (she is lighter and less of a strain on my back). I know this sounds selfish, but I am hoping that progress will continue and we can start counting down the days towards the end.

Family Fun!!! :)

We were lucky to be able to spend some quality family time together this weekend as Dan had off this past Friday and we spent the evening at Country Inn & Springs Water Park as part of the WELS Urban Retreat. Here are some videos and pics we would like to share.

Terrible Two's?

Hannah has always done so well with bed/naptime and wearing her braces....for some reason, (terrible two's maybe??) she has been having more issues with wearing them. She is used to her routine of taking them off for an hour before bed, but today she refused to nap and insisted that we take her braces off. I gave her the choice...either now or later....of course she chose the instant gratification route! We will see if she fights us when we don't let her take them off later!!
These days we are praying for patience and hoping she can get her legs corrected sooner than later.
I also may have found another parent who has a child who had had Blount's in the past and has had the surgery. Thanks to my wonderful MIL....We plan on making contact with this family soon. There are of course, so many questions concerning what is ahead and we could use some words of encouragement and comfort from someone who has been there.
We appreciate your continued support and prayers.

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!