The Casting and Bracing process

            So, we had our appointment to get AnnaRaes casting done for her KAFO braces. I was really hoping she'd be happy, and cooperative. Didn't work that way. She screamed the second the specialist took out his pen to draw on her leg. Her screaming lasted throughout the whole appointment. About 45 minutes. It truly was heart breaking, but I'm just happy we got through it, and it's done. Now we wait.

 

 

Wait is over!

4 weeks later, and AnnaRae has her braces! It felt like it took forever, but they're finally here and AnnaRae is actually adapting really well.

 

This was at the Clinic when we first put them on her! She did great.



 

 

 

When she first tried them on, she wasn't happy. She kind of just stood in place and reached her arms out for me to pick her up. She didn't really understand that she could still walk, she thought she was stuck. I grabbed her hands and helped her take a couple steps. After holding her hands and walking with her for a couple minutes she was walking on her own. Not very fast... but she was doing it. After our appointment, AnnaRae, Daddy and I went to a celebratory dinner at Brazzi's. She always has a blast at restaurants which makes it pretty hard for me to enjoy my meal. She doesn't want to sit at all. She always has to stand up, so, I apologize to you waitresses that hate the people who constantly ask for booths. I know how much of a pain it is.

 

AnnaRae and Daddy at Brazzi's just texting friends :o)

 

 

 

We've had the braces for about a week now, and she's doing great. Believe it or not, she kind of enjoys them. In the morning when I come into her room with the braces, she sticks her legs up in the air because she knows what's coming. Hah! It's the cutest thing, I gotta say.

One week in, and already a pro.

 

 

I'm going to make an appointment for a little physical therapy for her. They come to the house and everything which is great! I'll update you guys on progress in a couple weeks. We go back to the clinic in a week or so, and then to the orthopedist on September 4th so Dr. Haynes can see her progress, if any!

 

Wish us luck!

 

 

Morning of

Feeling very positive this morning. I was kind of nervous about her legs getting casted and molded today. Because she barely lets the doctor listen to her heartbeat at the doctor. Not only that, today is the reality of it all. I've been waiting for a call saying they were wrong, that she doesn't have blounts. But that was my wishful thinking. 1:45 today, this little lady is getting molded for her bilateral KAFO leg braces. And dare I say.... I'm excited. I'll post pictures later of the casting/molding. 

            Slept in a little bit today. 

       Enjoying my coffee outside. It was actually REALLY nice out. Breezy and cloudy. Perfect temperature. 

-heather

Shriners Hospital for Children

        So, in my post yesterday, I mentioned that I got in contact with the care coordinator at Shriners. Well, I emailed her pictures of AnnaRae and her X-ray's from our Orthopedist here in Jersey. When I initially spoke to Debbie, I let her know my situation. This is all new to me. She said she would show AnnaRaes pictures to one of their orthopedic surgeons. I told her that I would like to bring AnnaRae to Shriners if they felt it was necessary. I don't want to commute almost two hours to Philly if it's a mild case. So, she emailed me back and said that the doctor thinks I should bring her in for an appointment, so they can examine her in person.
       
          I'm really not entirely sure how I feel about it. Obviously, a big part of me is happy that some of the best orthopedists are going to be giving me a second opinion. But, at the same time, I was sort of expecting an email that says "AnnaRae looks like she will be just fine, there's no need to commute two hours to see us". Nobody expects to hear something negative about their child. Nobody wants to hear that their child is no longer that "perfectly healthy baby". AnnaRae was diagnosed a week ago, and this week feels like a wild roller coaster ride. The sad part is, we haven't even begun yet. We're going to get her legs casted tomorrow, which will take about an hour. I'm hoping we can distract her with snacks and electronics. That works for everyone, right?

           I also called the original orthopedist who diagnosed her today. I'm not sure why, but I felt the need to ask how sure he was that she had Blounts Disease. Part of me thought maybe he missed something. Well, I learned something else. Don't second guess Orthopedic Surgeons. He just kept saying to me "Mrs. Acquavella, it's Blounts Disease". And I didn't care enough to correct him on my last name. I tried to re-diagnose her myself. I said "maybe she just has bowed legs". He didn't agree. I guess these guys know what they're doing. More so than I do anyway.

       She missed me while I was running today. Maybe I just appreciate her hugs more, as of recent. But she seems to be very lovey dovey lately. Can't get enough.

Dr. Haynes said she's going to need her leg braces for at least a year. It's going to be a long year. Bring it on.

"When you reach the end of your rope, tie a knot in it and hang on"

-Franklin D. Roosevelt

-Heather

Day 6

So, today was a little productive. I've had a few people tell me that I should look into Shriners Children's Hopsital. I called today, because you apparently have to go through Patient Referrals and Eligibility. I called and spoke to a woman and this is how my eligibility screening went.

Shriners: "Hi, how can I help you?"
Me: "I wanted to find out if my daughter is 'Eligible' to be seen at Shriners in Philadelphia"
Shriners: "What is your daughters condition?"
Me: "She has infantile Blount's Disease"
Shriners: "Yes, she's eligible. Let me transfer your to our intake coordinator"

Yeah. That Simple. So, I spoke to the intake coordinator and let her know that I'd like to speak to someone about AnnaRae's condition before I register her as an outpatient. She transferred me to the Care Coordinator, Debbie Armstrong. She was a joy to speak with, and didn't make me feel dumb, because I really didn't even know what questions to ask. I did a lot of "umm", "uhhh", and a couple "I have no idea what that means". She was completely understanding of my cluelessness. She works closely with one of the Pediatric Orthopedic Surgeons. She told me a little more about Blount's Disease, just went into a little more detail about the growth plate which is the "root of all evil". Well, I mean, that's what I got from it. She asked me to email AnnaRae's X-rays and pictures to her. I was just picking up AnnaRae from daycare when I got off the phone with her. As soon as I got back in my car, I started the email. AnnaRae was not happy about sitting in the parking lot of school for 10 minutes. Well it was that, or she couldn't reach her ritz crackers. I couldn't be bothered though, I was on an email MISSION.

I haven't heard back yet. I'm not all that surprised. I sent her the email around 4, and it's probably a pretty busy hospital. I'm hoping to hear from someone tomorrow!

On the bright side, I ran today. I've been so scatter brained and pre-occupied lately, I just have no time or motivation to run. I did 2 miles today. Felt like 8 if you ask me. I need to get my mojo back.

Thanks guys!
I took more pictures of AnnaRae today in a diaper. You can see the curve a little more when she doesn't have clothes on.

-Heather

Setting sail on the S.S. Proactive, on our way to beat Blounts Disease.

       So, I had a friend tell me about GoFundMe. It's a website where you can set up your own profile, set a goal, and ask friends and family to donate to your cause. I'll be honest, at first I was more interested in making my cause "New Wardrobe" or "Vacation to the Caribbean", but I settled with "AnnaRae Vs. Blounts Disease". She's lucky that those crazy legs are more important than my life of luxury. So, anyway, I posted my GoFundMe profile on my facebook, and within like 5 minutes, I had four amazing amazing people make donations. I'll be perfectly honest, I felt that knot in my throat. That knot you feel when you watch "My Girl". You know. Don't Lie . So let me just say thank you a thousand times to Teresa, Heather, Shelley, and the Johnsons, you are all beautiful people. I can't thank you enough. I'd like to say that I am not only thanking people for the obvious financial help. I've made it no secret that we just can't afford the out of pocket expenses required for her braces. But what most of you don't know, is that there's a little flicker in my heart that I feel everytime someone sends a well wish, or donates to the page for us. I'd like to thank you for THAT as well, because that's a feeling that I've never experienced. The people in my life are truly amazing.


Here is the "Widget" for my GoFundMe profile. <3 br="" nbsp="">
       
            Alright, before I start crying, let me give you a SMALL update. When Dr. Haynes told me that AnnaRae needed leg braces, I kind of just brushed it off. "Okay, cool". I didn't think to ask too many questions. As the days went on after her diagnosis, I started thinking of a THOUSAND questions. Well, I found out a couple.

1. What are these braces called exactly? 
bilateral KAFO (Knee, Anke, Foot, Orthotics) braces.

2. How exactly is she fitted for these?
It's a "casting" process. It should take around 45 minutes to an hour. But I'm thinking, in AnnaRae time that's like 2 hours, she's hates being poked and examined. (Lucky me)

3. When can I take them off of her?
When she goes to bed, when she swims, and when she bathes.

I should get a little more info on Thursday when she's getting casted. I'll have a nice long hour to ask some questions. I'll update then! Thanks everyone!

July 7th, 2013

-Heather M.

The Start

Hey guys, I'm starting a blog about my daughter AnnaRae. She's a 15 month old, sassy, independent, playful, flirty little toddler who is on her way to taking over the world. Her only temporary set back is that we just found out she has Blounts Disease.

Blount's Disease is a progressive children's
disease that effects the varus angle of the
proximal tibia(shin bone).

                                     My litte family, Winter 2013. Mommy, Daddy, AnnaRae.

                                                 The Pretty girl, AnnaRae, and myself.

On July 3rd, my daughter, AnnaRae had an appointment with a pediatric orthopedist after being referred by her pediatrician. I always noticed that her legs were bowed but was always told by numerous people that she would grow out of it. when she was around 13 months, I started to become a little more worried. I noticed how straight other babies legs were, and AnnaRaes were pretty dang curvy and bowed. That's when I asked the pediatrician to take a closer look.
       We saw Dr. Paul Haynes, who is a pediatric orthopedist, and he was spectacular. I'm always skeptical about male doctors because AnnaRae gets really shy and does NOT like to cooperate. But Dr. Haynes was great and AnnaRae seemed to warm right up to him. He had her sit on my lap so he could take a look at her legs. He told me that he wanted to give her an x-ray, just to be on the safe side. At this point, I didn't have a worry in my head. Cool. X-Ray. Let's do it.
       During her x-ray, AnnaRae did NOT want to hold still. So we brought in back-up. Cute tech boy. AnnaRae almost immediately stopped fussing and stared at him with the most bashful face. Adorable. stop it. So, after the X-Ray, we went back into the exam room and Dr. Haynes came back in, brought her X-Ray up on the computer, sat down, pointed at some things, spoke some big words, as I sat and nodded my head, pretending to understand every word. The only word I caught, and was able to understand was "disease". I'm sorry, what? Come again. Blounts Disease. He explained VERY little about it, which, after leaving the doctor, I realized that it pissed me off. But thinking now, I'm glad he didn't go into full detail then and there. It was a lot to take in just hearing the word "disease". And he made sure I left the office totally calm and care-free. Thanks Doc. So, anyway, Blounts. He explained that she's going to need braces on her legs to correct it and hopefully help her legs grow in the right direction. Honestly, this whole time he's speaking, I'm totally with it. Calm and cool. I was just taking it all in with a half smile, half confused face on. So, the next step is getting her molded/fitted for her brace. She has an appointment on Thursday for that. And I guess we'll take it from there. Nothing has really sunk in yet. Still preparing for this crazy journey ahead of us. I'll write as I learn more and with each step.


-Heather