Friday, February 28, 2014

Progress!

       We are now 6 weeks in to the lengthening process and we have 3 cm!  As you can see above, Eleanor's fixator has 6 struts or bars with threads that we turn daily.  We turn 2 struts at a time, three times per day. The turns can be quite painful as they pull the 2 different bones apart by 1mm per day.
     During surgery, the fixator was placed, anchored just below the knee and at the ankle. Both the fibula and tibia were broken. We were able to start turning the struts one week after surgery.
    We now follow up with Dr. Paley every 2 weeks to make sure that everything is going well. It is amazing to watch the progress! The first set of pictures were taken 2 weeks into turning and the second are from this week. If you look closely, you can see the cloudy area between the bone. This is new bone forming and it is exactly what we are supposed to see!
     We have a 5.3 cm goal for this lengthening and if all continues to go well, the last turn should be April 1st! Keep up the good work Eleanor, you are almost there! You are such a brave, determined girl. We are so proud of you!

Thursday, February 27, 2014

What have we been up to?













     We are nearing two months post surgery. Eleanor is doing great! Our days are busy, which is not much different than home, but the weather sure is! Eleanor does therapy and school work in the mornings and then goes to physical therapy in the afternoon. Most evenings we swim in the pool, which is also good therapy. Some nights we have evening therapy as well. All the hard work is paying off as Eleanor continues to have great function and strength with lengthening.
     We have also been passing the time with fun activities when we can. Eleanor and Margaret take golf lessons every Thursday afternoon with "Mr. Dave" and other friends with fixators. We try to go to the beach every week. Eleanor is able to swim in the ocean as salt water is good for her pin sites and can actually prevent or reduce pin site infections, which we do not want!
     We were able to visit Clearwater Marine Aquarium where Winter the star of the movie "Dolphin Tale" lives. You can see her prosthetic tail in the picture. She does not wear the tail all the time, but uses it to strengthen her muscles so that she does not damage her spinal cord when she is not wearing the tail. Using the prosthetic tail is like physical therapy for Winter...Winter does therapy too!
     Other fun trips have included a day in the Everglades or tropical wetlands of Florida, which is home to manatees, alligators, crocodiles, snakes, many birds and even panthers! We took an air boat ride, spotting many alligators and birds. Later we saw an alligator show and were able to hold a baby alligator. It was much smaller than the one Margaret is holding in the picture, but it still had a lot of sharp teeth!
     We had another hands-on wildlife experience at Safari Edventure in Miami. Many of the over 50 species they have there are rescued exotic species. What a fun day! We were able to pet wolves and a kangaroo. They also had a great presentation where we were able to hold all of the species they discussed including a sloth, armadillo, anteater, chinchilla, tarantula and a Burmese python that was 14 feet long and 110 pounds.You can see how big it was in the picture of Eleanor and Margaret holding it with their cousins! Phytons can get up to seven feet longer than the one pictured and are an invasive species in the Everglades, meaning that people (pet owners) introduced them to the area. It is a huge problem as they have no natural predators and prey on the mammals and birds of the Everglades. There are an estimated 150,000 invasive pythons and anacondas in the Everglades...a fact that might make you feel good about living in Wisconsin, despite our winters!
     We have also been bowling with the Paley kids, miniature golfing and out to fun Florida outdoor restaurants. As you can see, nothing stops Eleanor for long. She is walking without crutches now and is even able to play on the monkey bars!

     

   
   

Sunday, February 2, 2014

Back to the Blog and Lengthening

     After a five year break from Eleanor's lengthening journey, here we are again. It has been a wonderfully busy, normal life (for us) hiatus. Eleanor is an active, athletic, intelligent and average child who you would never guess has been through any of the previous posts. She loves school, ballet, soccer and her friends. We have been busy keeping up with Eleanor, Henry and Margaret as well as our new additions of Ingrid and Maeve. Dan started and finished graduate school. We have moved. What haven't we done in the last five years?
     Eleanor is now 9 and as she grows, her left leg does not keep up with the same rate of growth. She once again has a 5cm difference, which is now coming from her tibia and fibula. As such, we find ourselves in Florida with Dr. Paley once again.
     Dr. Paley moved to Florida shortly after Eleanor's last lengthening. We have been following up with him annually here in West Palm Beach ever since. Last year's visit brought the news that we could lengthen at any time. Of course, we decided winter would be an ideal time to be in Florida. Lengthening once again means relocating for 3 months for surgery and intensive physical therapy during the distraction or lengthening phase.
     After a family road trip and getting settled into a condo with a side trip to the Florida Keys, Eleanor had surgery January 7th. All went well and Eleanor surprised no one by walking the entire length of the hall her first time out of bed. Could there be a more determined girl than Eleanor? She is truly incredible and always amazing to watch.
Here she is walking the halls. First time up!

Pre-surgery trip to the keys.