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!

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!

     

   
   

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. 

I just wanted to apologise for the format. I really did have paragraphs, but everything changes when I post...hope you will still be able to read it!

Above are a few more photos from our week. I love the one with the Eleanor the Incredible cookie; thanks John and Diane! The other is really self explanatory and sums up our 5 hour therapy experience. We love our grandmas and grandpas!

We have officially been lengthening for only 3 weeks and the progress is amazing! You can see from the pictures above the difference in Eleanor's lift. The lift was basically halved and she is very proud!

On Monday we met with Dr. Paley (on left). It was a great visit because we learned that Eleanor has already gained one inch of length and has one more to go. If everything continues to go well, we may be home in one month versus two! That was definitely exciting news!!

Eleanor continues to do very well with therapy and bending her knee. She has even taken up ballet with her fixator. She and Elizabeth, the little girl pictured with her last post who also has a fixator, have been entertaining the household with their new moves. A wind wood quartet performed at the house this week with the addition of 2 tiny dancers...make that 3, Margaret joined toward the end.

Dr. Standard, pictured on right, will continue to follow Eleanor while we are here as Dr. Paley is moving to Florida. Dr. Paley will continue to see Eleanor this summer when he is settled in his new practice. Both are amazing, world renowned orthopedic surgeons instrumental in advancing the field of deformity correction. Limb lengthening has really only been around for about 20 years and is ever changing. We are hopeful that this will be Eleanor's only lengthening, but if she has another down the road, it will most likely be a completely different process. Internal devices are now being used in adults. It really is amazing to see what these two talented doctors are able to do. Many of the children they work with have been told amputation is their only option and have fully functional limbs thanks to legthening. Many of you know that we were considering amputation for Eleanor too. We feel grateful to have found Dr. Paley and Dr. Standard. I really don't think I would have trusted anyone else.

We had a great visit with grandpa Dave. Eleanor and grandpa went to an Oriole's game. We also had a chance to visit Shenandoah National Park. The mountains were beautiful and it was great break from city life. Eleanor was able to participate in junior ranger day at the park. The picture above was Eleanor on a nature hike. She was looking at termites with her magnifying glass. She was really interested in the hike and also got a chance to use a fire hose with the fire crew. The fixator really does not slow her down a bit!

Community at the Ronald McDonald House

We have had a busy week. Eleanor continues to have therapy every day. The good news from therapy this week is that we can have Eleanor's shoe lift trimmed by one inch! There is a visible change as Eleanor's left hip is definitely higher as her leg is growing! It is exciting to see the progress.

We said goodbye to Grandma Maureen this week. She had been staying with us from the beginning and was a great help. We had many fun adventure and miss her company. We really enjoyed our visit. Grandpa Dave joined us on Saturday and will be here for the week.

The above pictures are mostly from the weekend. The top is Eleanor and Margaret at the zoo with their favorite animal the chimpanzee. Eleanor especially did not want to leave. There are 2 young chimps that are very active. They were chasing each other and swinging from ropes, banging the windows. They were fun to watch. I think we might have to make the trip often as both girls loved to watch the animals and it is a good outdoor destination.

The next picture is Eleanor and her friend Elizabeth. Elizabeth is 4, has a fixator and stays at the RMH with us. She and Eleanor have similar personalities and are becoming fast friends. As you can see. Elizabeth also has short arms which will also be lengthened one day.

The next pictures are at the RMH. Eleanor and Margaret seem to thrive here. Eleanor has never gotten close to Santa Claus, but warmed right up to the Easter bunny when he came to visit last weekend. Margaret is sitting with her first love Ese. She will happily go sit with him even from Mom's arms. She once sat quietly with him for close to an hour while he played bingo. It is a fun relationship to watch. We will miss Ese when he and his family return to Hawaii this week.

Success-here are the rest of the pictures from the hospital stay and beyond. The only problem now is that they ended up in reverse order. Oh well, maybe I will figure it out by the time we come home.

Many of the pictures are of Eleanor in the hospital. The ones with the pink gown are right after surgery. You can see the fixator up close. It really is large and heavy, but Eleanor was pleased that it was "small." There are many different types and Eleanor has seen them all. I think she thought her entire leg would be "caged."

The others are Eleanor walking with a walker, which she doesn't use anymore, and getting ready to do pool therapy.

I can't remember what I said yesterday about our visit with Dr. Paley. We waited 6 hours for basiclly no news, but reassurance that all is going well. Also we have moved to Tylenol only for pain. Eleanor does not want any pain medication because she is not having any pain (but mostly because it tastes bad.)

We are off to the pool. I just wanted to get these out. Thanks for the continued love and support.