Aubrey’s surgery date has changed again!

Caroline from Dr Paley’s office called and asked if we would be interested in changing Aubrey’s surgery to December 7th because Dr Paley wants to fly in surgeons from all over the world to watch and learn about the procedure he is going to do. She said normally they don’t ask this of patients but due to the fact that Aubrey’s condition is so rare (each PFFD case is different within itself but Aubrey’s is on the more severe side) not many surgeons know about the procedure Dr Paley has come up with and he is wanting to teach other doctors about it.

We really didn’t want to push it back 2 more months because we are ready to get it behind us and it’s not the best time of year to have a surgery….. it will put us flying home on Ethan’s birthday, 3 days before Christmas, but it seemed like such a good cause. More doctors learning how to do this surgery means that more children like Aubrey will have the option of lengthening….Dr Paley is one of the only doctors in the world right now that would even attempt lengthening on Aubrey and so many others. My hope is that it will soon change and more doctors will see how Paley is changing these children’s lives and that they will learn the techniques Dr Paley has found. And for Aubrey to be a part of that change would be incredible………..not only will this surgery change Aubrey’s life for the better but it could help change many other children's lives in the future.

So it didn’t take us long to decide that Aubrey’s new surgery date is December 7th 2010!

Update

Well....Aubrey turned 4 in May...I can't believe my baby isn't a baby anymore! She decided for her #4 birthday she wanted a Tinker Bell party and on her #5 birthday she wanted a Princess party.......she is so funny and definitely my daughter......already planning things out ahead of time. She got lots of new toys with teeny tiny pieces.....Woohoo....I love those kind! LOL 

Aubrey's surgery date has changed from September 8th to September 22nd because I realized that school started on September 7th. We originally scheduled Aubrey's surgery in September instead of during the summer because Brad was changing positions at work and we thought he would be in training until around then (as it turns out he wasn't in training as long as we thought) and I thought school would be starting in August so my plan was for them to go for a couple of weeks before she had her surgery. I didn't want the kids to miss their first day of school so I called to reschedule hoping to move it up to August.....no luck Dr Paley was booked....so we settled for September 22nd.

When trying to decide when to reschedule I called to talk to Caroline (super sweet lady at Paley's office) about Aubrey's recovery time and found out that she will be in a fixator for 3-4 months instead of the 6 weeks we had anticipated. I was pretty bummed but I guess it will be good practice for when she has to wear it for 8 months. The good news about having a fixator instead of a spica cast is she will be walking within 3 weeks instead of 6 weeks of no weight bearing.
I have been quite emotional the past couple of months thinking about what lies ahead....I think partly because of Abby & "little" Ethan (some of our PFFD friends) having their hip surgeries just a few weeks ago. When someone you know is going through something you are about to go through it really hits home. (They are also seeing Dr Paley and they live in the Dallas area so they're just a couple hours away from us.)  I'm so thankful to have found such great families to connect with. They have been such a blessing & strength to me.

Abby 2 weeks after hip surgery

"little" Ethan at our last play day

We had our 6 month appointment with Scottish Rite last week. I was a little nervous about it because I knew we were going to have to tell the doctor that we had Aubrey scheduled for hip surgery (He is the one that told us we needed to rethink it and that the surgery wouldn't help) I was surprised at his reaction when I told him, I thought he would try to talk us out of it but he just said " I still don't think surgery will help her hip and that rotation or amputation is the best options, but I respect your choice and we will help along the way however we can." I'm curious to see what he has to say about her hip after she has surgery. 

While we were at Scottish Rite we had Steve look at her prosthesis for adjustments.....she was desperately needing some new straps (hers were looking quite dingy) and she already needed length added to it. We were hoping to get a new foot put on so she could wear flip flops (the feet that have a split toe are a different brand and they don't make them in really small sizes) but her feet still weren't big enough......maybe next year.

Yesterday we went for our 4 year old well check up. She had to get shots...I thought it might give us an idea of how she would be in September....she did really good. On the last one she cried but the nurse said that that particular shot did hurt going in. So maybe she will do good in September with her IV and all the other pricks and pokes she will get. We had a talk about it last night. I told her she was going to have more shots when she had her surgery in Florida and she seemed to be ok with it. She told me that when she got to be a big girl she wouldn't cry. I told her that it was ok to cry but she just needed to be really still so that it didn't hurt even more. So we will see.

We are excited & nervous about the upcoming surgery but ready to get it behind us.

Well I think that's all the news for now....

As surgery day creeps closer I find myself feeling more and more emotional....only 4 more months. Which means it’s time to start planning the trip, contact the insurance company, find a therapist for when we come home and all the other details that I can’t think of right now. Aubrey has been talking alot about wanting her “little” leg to grow which has allowed me to talk to her about the upcoming surgery so hopefully she will be somewhat prepared for what is ahead.

Aubrey's newest "Leg"

                                         Aubrey getting casted for her new leg

   

Aubrey at some of the fittings.

The finished product! She picked out the design down to the purple straps.

                                                 

                                      

Aubrey's Story

I am writing this not only to keep family and friends updated but also in hopes that it might help someone else that may be going through the same or similar situation.


Ok so where to begin………. I have 4 years to catch everyone up on and I’m not much of a writer so bear with me…..this story begins in October of 2005 when we found out we were expecting again…… this came as a bit of a surprise because our son, Ethan, was only 9 months old….so it wasn’t exactly planned but the feeling of surprise quickly turned into excitement as we thought of the joy of bringing another life into this world. Little did we know just how much our world was going to change and the decisions we would have to make for our precious baby girl.


As the weeks passed I began having this fear of something being wrong with the baby. My doctor reassured me that the baby’s heartbeat was strong and everything appeared to be fine but I just couldn’t get past the feeling ……call it mother’s intuition or whatever you like but I call it the voice of God. God knows what we have need of even before we need it and He said that He would never put more on us than we can bear. I believe it was God preparing me for what was ahead and showing me just what I needed to pray for so that when the time came His strength and peace would already be there to see us through.

With much anticipation we went to my 19 week ultrasound. I knew when my doctor got very quiet and began re-measuring the baby that something was wrong. After the doctor finished up on the measurements he began to explain what he had discovered. He said that the baby’s left femur appeared to be significantly shorter than the right, but that everything else appeared to be normal. My doctor recommended that we get an ultra sound from a specialist. So one week later we saw a specialist and she confirmed that it was indeed just the left femur and our baby girl was otherwise in perfect health. Although we were relieved that everything else was normal still our hearts sank. As parents we want to protect our children and although it’s inevitable that pain and trials are going to come their way, it’s heartbreaking when we foresee the hardships they are going to have to face. It’s devastating to hear that your child has a disability…..just so you know I don’t use that word very often …I don’t like it.……it’s like being told I can’t do something and I don’t like being told I that and I don’t ever want my daughter to think she can’t do something just because she is different. …..although if she is anything like me (and I think she is) it will just make her more determined to prove everyone wrong…. anyways back on track….. After the appointment I began researching on the internet about short femurs and leg length discrepancies and found websites talking about Symes Amputation, Van Nes Rotation (The lower leg and foot are rotated 180 degrees, so that the ankle joint now functions as a knee joint) and Lengthening. I was devastated thinking about what my baby girl was going to have to go through, none of the options were going to be easy quick fixes especially if we chose lengthening and although the doctors told me that the cause is unknown and nothing I did…. I felt so guilty, like it was my fault, like I had done this to her. I wished so badly that it was me instead of her. I wanted to take away every discomfort and pain she would feel and give it all to me. I knew BIG decisions were going to have to be made and I didn’t feel qualified to make those decisions. All I could think was how could I make a decision to amputate my baby’s foot…. I mean if it were my foot… ok… but my baby’s? And a perfectly good foot at that. It even had five toes (it is common in children with PFFD to have toes missing) I began praying about it and having a little pity party for myself telling God how unqualified I was and how I didn’t want a child with a “disability” (that dreaded word again) and that I just couldn’t handle that kind of responsibility…. Ever try bargaining with God? I did that too..... If You will do this for me then God I will do this for you…..Ha like that really works…. and if it did work can you imagine what a mess we would have ourselves in? Finally after I pitched my fit and told God everything I wanted I picked myself up and said Ok God you know all things and you know what is best for my life, my family’s life, and most importantly this life that I am carrying. I have always asked for your will in my life and I’m not going to stop now. Although I can’t see what the reason or purpose of this would be…. if this is your will for her and us then so be it. I felt like right then God answered me and said “this is My will.” I still felt unqualified and heartbroken but it somehow helped to know that there was a reason and a purpose and that God had a plan for her. I later came to the realization that although I did not feel capable of this responsibility that God knew I was capable. He had a plan for our lives and He knew we could make the right decisions. I felt honored that God had so much faith in me.

At around 21 weeks I began having contractions (nothing to do with her condition I had my son 4 weeks early) and was put on bedrest for the remainder of the pregnancy.

On May 5th 2006 Aubrey Paige Coco was born (6 weeks before her due date) weighing 4lb 4 oz. The concern of her leg was put on hold as we focused on her well being. The first two days she was on oxygen to help her breath; the first 4 days she had an IV and eventually had to have a feeding tube. Again I found myself feeling so guilty, if only I could’ve done something different so that I wouldn’t have gone into labor so soon. She was going to have a hard enough life as it was so why did she have to start out like this? It just didn’t seem fair, but well you know life isn’t fair. Sometimes we don’t ever know or understand why we have to go through certain situations, but we just have to rely on God and trust that He knows what’s best for us.

Once she was doing better and breathing on her own they took some x-rays of her arms and legs. Her left femur was a little less than half the size of her right femur. Her pediatric doctors didn’t have any answers for us as to what could be done and recommended that we go see the doctors at the Scottish Rite Hospital in Dallas,Tx. After a long 14 days in the hospital Aubrey was breathing on her own and eating a whopping 10cc (1 oz) at each feeding and we were able to go home!

One month later we made the 2 hour trip to Dallas for our first visit at Scottish Rite. The doctor quickly gave us a name for her condition-Proximal Femoral Focal Deficiency (PFFD) and handed us some papers explaining exactly what that meant and said that she did not look like a good candidate for lengthening. He said that amputation or rotation would probably be the best way to go. Then he told us to take our baby home, love her and enjoy her and to come back in four months to see how she was progressing. I was devastated! I had gone anticipating them telling us just what they could do to “fix” her leg and expected them to give us a treatment plan on how and when they would lengthen it. It just didn’t seem possible that with all the medical technology and knowledge out there that they couldn’t lengthen her leg. I cried nearly the whole way home. We went home disheartened but did as the doctor said…..we loved her and enjoyed her and tried not to think too far into the future.

We went to her second appointment and it was about the same as the first not much hope on lengthening and the “let’s just wait and see” approach was introduced. Anyone who really knows me knows that I’m not a very patient person (I think that is something God has tried to teach me over the years) so the wait and see plan didn’t really sit well with me but what else could I do? So we went home to wait for her next appointment. We tried to stay positive. I found a website for PFFD that helped give me some incite as to what others were going through. I read as much as I could find on the internet about PFFD.


Since Aubrey was premature she progressed a little slower at things. At around 7 months she started crawling (she would army crawl on her belly) and around 9 months started sitting up but at 10 months she still didn’t like to stand up. Her pediatrician wasn’t too concerned with it and said she would figure it out. When we had our appointment at Scottish Rite I told the doctor my concern and they suggested we look into Early Childhood Intervention (ECI). The ECI therapist was fabulous. She showed us techniques and exercises to do with Aubrey that would help strengthen her muscles and encourage her to stand up……she even wore little weights on her legs (which Aubrey didn’t really care for). Once Letty (ECI therapist) started coming it didn’t take long for us to see progress.


When we went back to Scottish Rite in June 2007 we learned that the concern was not with the amount of length that would be needed on the femur (they said they thought that was possible) but the concern was with her hip. In most cases of PFFD it’s not just the femur that’s affected but there is usually some anomaly in the hip as well as the knee and ankle… and like I had mentioned earlier some are even missing toes or have other anomalies. They said her hip was pretty severe and that she did not appear to have much of a socket and a head could not be seen. It was possible though that the head had not ossified yet so we would “wait and see” if a head appeared on her femur. They also said she was ready for her first prosthesis! So we had our first casting….that was fun…….if you like ear piercing screams.


After three more trips to Dallas for fittings Aubrey got her first prosthesis! We got to pick out a design for it and of course daddy wanted camo….so we went with pink and green camo. At 18 months, after having her prosthesis for only 4 months, Aubrey was walking! Shortly after learning to walk with her prosthesis she started walking without it.

In the meantime while Aubrey was learning to walk and we were waiting to see about her hip I continued my research. I kept seeing this doctor’s name, Dror Paley, on the PFFD website and on other blogs. He lived in Baltimore and was known for taking on cases that other doctors wouldn’t touch. So I began researching him. I was amazed at how many websites there were talking about him and what he did. I’m not really sure how he finds time to sleep with all that he does. He has performed more than 10,000 limb lengthening and reconstruction-related procedures on patients from all over the United States and from more than 70 countries from six continents and has developed (created/invented) more than 100 new operative procedures. He has published over 100 articles in the peer-reviewed literature and has authored and edited 5 books and 33 book chapters. He is fluent and lectures in six languages – English, Hebrew, French, Italian, Spanish and Russian and has received several awards, including a Gubernatorial Citation for Outstanding Contributions in Orthopedic surgery in 1990. Paley also initiated and organized the non – profit organization Save-a-Limb Fund and the annual Save a Limb fundraising bike ride. The list goes on and on. He is the best of the best and I knew at some point we would meet this man.

Well Aubrey continued to grow and not much of anything held her back. She was my climber….I would find her on top of the kitchen table and climbing up the ladder of her big brother’s bunk bed (before he would even climb up it) and anything else she could find to climb on. She did pretty much anything any normal child her age would do. She just had to do some things a little differently. And ok as a mom I have to brag ….. just before her 2nd birthday Letty (ECI therapist) tested her (fine motor skills, gross motor skills, comprehension, social skills, ect.)she was right on target for everything and on her social skills she tested at 32 months……yes I said 32 months (at 24 months she was using 4 to 5 word sentences)….. she definitely knows how to express herself.

We continued to have our appointments at Scottish Rite and the “let’s wait and see” continued also. I knew from Paley’s website that he started lengthening on some children as early as 3 years of age and although we had agreed that we didn’t want to start the lengthening process that early I wanted a game plan….like I had said earlier I’m not a very patient person and I like to plan things out ahead of time…. I want to know what I’m doing and when I’m going to do it and it stresses me out not to know. So as you can imagine I was getting a tad bit stressed about the “wait and see” plan we were currently using. So in December 2008 I decided it was time to see Paley so I requested Aubrey’s x-rays and clinical notes from Scottish Rite and in January 2009 when I had gathered all her medical information I sent them to Paley. Just a few weeks later I was amazed to get a phone call from Paley himself. He spent a good 30 to 45 minutes with me going over all her medical information and telling me a “game plan” of what he could do for her. I will never forget the way I felt that day. The excitement and joy of knowing there was a doctor out there that confidently said “I can make her have two legs that are the same length”. He recommended that we get an MRI so he could get a better look at her hip and then come see him for a consultation.

Paley was in the process of moving from Baltimore, MD to St Mary’s Hospital in Palm Beach, Florida so we scheduled an appointment in June 2009 after he had settled in at the Florida Hospital. We were able to make it a family vacation. It was a wonderful trip and so much fun. We went to the beach and the kids got to play in the sand and see the ocean, but their favorite part was the swimming pool at the resort we stayed in……but I know I know on to the appointment……it was pretty much an all day event, with lots of waiting. They took more x-rays of Aubrey’s leg and then we saw Paley. He went over the plan in great detail, showing us computer slides of what he thought needed to be done. He answered the big question “Is there a femoral head?” The MRI showed that there was indeed a small femoral head and it appeared to be partially fused to the socket. He explained that Aubrey would need a procedure he called the Superhip II. The Superhip II is a procedure he developed only 8 years ago and he has only performed the surgery on about 20 patients. It is a very difficult surgery and a very major reconstruction of the hip. She will have lots of wires and hardware in her hip and because of the complexity of it he will not do it until Aubrey turns 4. After the surgery we will need to stay in Florida for two weeks to make sure no major complications arise and she will wear a fixator for six weeks while the hip heals. He said there was the possibility that he would not be able to unfuse the head from the socket and if that be the case we could still do lengthening. Two years after hip surgery the lengthening phase begins. Aubrey will need 4 femur lengthenings along with a tibial lengthening (we found out at that appointment that her tibia is slightly shorter). The first lengthening would take place at age 6, the second at age 9, third at age 13 and the last one would be at age 16. In order to get to the goal of two legs the same length we need to gain 8 cm at each femur lengthening along with 5cm on the tibial lengthening and at age 9 we will remove the growth plate on her right leg to gain 2 cm (or lose 2cm in her right leg) making a grand total of 39 cm (15.4 inches). Each lengthening will take approximately 8 months (that’s with no major complications) and she will wear an external fixator during the whole process. The first 4 months of the process is when the actual bone growth is gained and during that time extensive physical therapy is necessary to help the muscles grow and to maintain joint flexibility…… so during that phase we will need to stay in Florida. The second phase (4 months) is where the bone is healing and hardening. She will continue to wear the fixator, but we will be able to go back to Texas during this time.

We left the appointment with our minds racing….. So much information to process and so many emotions……the reality of it set in. How could we decide what was right for her? I mean when you look at the end result it seems obvious, but if you look at what she will have to go through to get there it makes you take a second look at the other options…… so many surgeries, so much pain, so many complications could arise, and the hip procedure was so new. Lengthening would be a long road for all of us but an especially long one for Aubrey. Amputation and Rotation seemed like an easier road but that would mean a lifetime of prosthetics. What would she want? Years down the road will she be happy with the decision that we make for her? With mixed emotions we headed home to decide what the best choice would be.

At our next visit to Scottish Rite we told the doctor about what Paley said he could do and they did not agree to say the least. Scottish Rite told us to rethink it and that our best option was rotation. Two doctors with two very different opinions…….that made our decision even harder but we knew we had some time to think it over because Aubrey didn’t turn 4 until May 2010….. which allowed us to do more research, more soul searching, more praying and more doctor’s opinions (none of which knew anything about Super II or even compared to Paley)

After a grueling 8 months we came to a decision………Aubrey is scheduled for hip surgery with Paley on Sept. 8th 2010. We don’t understand why God has placed Aubrey on this journey and we may never understand but I know there is a reason. I believe Aubrey will be a better person for having gone through this. I know I have already become better because of her. When I see someone with a “disability” I no longer look at them in pity but I look at them with admiration for what they overcome every day and when I look at my daughter I don’t see someone with a “disability” but I see strength and determination, I see someone with an attitude that says I can overcome life’s obstacles and nothing is going to stop me. It is going to be a long road for us, but I know God will be with us every step of the way. Please keep us in your prayers as we will need them and I will keep you informed as new information arises.