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!
Wednesday, June 16, 2010
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.
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....
Thursday, April 29, 2010
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.
Thursday, April 8, 2010
Wednesday, March 3, 2010
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.