Back to Baltimore

We are in the process of packing up the family and heading to Baltimore for Eleanor's first and hopefully only leg lengthening. It has been a long story to say the least. I have been meaning to update everyone for quite a while, but things have been evolving so here goes...

Eleanor will be having surgery March 31st to place an external fixator on her left femur. We are hoping to lengthen her femur 5cm over the next 6 months. Eleanor, Margaret and I will stay in Baltimore for the lengthening phase, about 3 months. Eleanor will be monitored closely and will have 2 hours of therapy daily. Then we will come home for 3 months with the fixator on so that her new bone can harden.

Our Baltimore address will be:
The Ronald McDonald House
635 W. Lexington Street
Baltimore, MD 21201
cell phone 309 558 5470

Dan and Henry will be holding down the home front. Henry will finish the school year and graduate from kindergarten in May! They will be able to be with us for the first week and will come visit in May.

As most of you know, Eleanor has fibular hemimelia and proximal femoral deficiency disorder, which means her left leg is significantly shorter than her right. The difference is ~5cm with projected difference of ~12cm. Our options were to lengthen her leg or amputate. As you can imagine it has been a difficult decision. We are lucky to have found an amazing surgeon, Dr. Paley who has been instrumental in advancing the science of limb lengthening.

Eleanor had surgery last April to reconstruct her knee and hip in preparation for lengthening. She has amazed us with her strength and determination. She can and has always been able to do everything any other child can do. She was born a gymnast and is proving it in class. Her current coach encouraged her to continue and suggested she skip 2 classes ahead. Eleanor takes great pride in this and is "practicing" at home. She has even been doing bar work in Daddy's closet...lets hope she doesn't try to do the same tricks with her fixator on. I am secretly hoping it will slow her down a little bit. I can't imagine doing flips at the top of your father's closet is recommended with a fixator. (To be honest it is not recommended without, but there is no stopping Eleanor!)

We will be driving out to Maryland and plan to stop and enjoy the ocean and hopefully warmer weather on the way out. Road tripping with a 6, 4 and 1 year old...let the adventure begin!