The story

Eden was born with a congenital birth defect - her left thigh bone does not grow properly. This summer, she is undergoing a limb lengthening procedure at Sinai Hospital in Baltimore, MD through the Rubin Institute. It is an approx 6 month process. Chris and I are grateful for everyone's well wishes, and want to do our best to keep you all informed, so we decided to create this blog. It will also be a way for us to document this process and one day we will show it to Eden and she will know, she can conquer anything.

Tuesday, July 20, 2010

















Eden had a great first day of PT. We were asked not to stay int he room and she willingly let us walk out. We chatted a bit with other parents whose children are undergoing lengthening. The two women have daughters who are little people and they are lengthening arms and legs, this time it is legs. Amazing what this institute can do. What we are doing is cake compared to their process. After her stretching we took her across the hall to pool therapy. She was hesitant at first, but quickly caught on. It is quite a process we have to go through :
  1. put on bathing suit, bathing suits need to be retro fitted to get over the fixator. Some use string bikinis or cut the sides and sew in Velcro. I found adorable suits online at www.snapmeswimwear.com that have snaps on the bottom! Turns out it is a NJ mom sick of her daughter's suits touching the gross floors at the beach and swim club! Sound familiar? They go up to size 4 - check them out if you have ever been disgusted for this reason, she was very generous when we told her shy I was buying so many suits, so I would love to send some business her way.
  2. sanitize the shower seat
  3. rinse the fixator leg - this is wear Eden got excited. She took the shower head from me and had a ball washing the fixator!!!
  4. put her in the electronic seat to lift her and then get her into the pool - see picture above. She hesitated at first, but on the way out thought this was a cool ride.
  5. post therapy - shower and dress (without getting soaked ourselves, I failed at this today)
  6. clean pin sites
  7. bandage pin sites
then we are done...luckily Chris is with me. Eden needs to be carried a lot and she feels much safer with Daddy, as do I. She walked in the pool and let the therapist do all the exercises. I think she is excited for more tomorrow.

She made it with very few doses of pain med today. Tonight she is sleeping in Ayla's bed - they are both thrilled to be together and its the first time in over a week Chris and I don't have her in bed with us (and I am blogging!!! ; ))

Bright and early we all pile into the car and head to Baltimore for the rest of the week. I hope it will be fun all being together. One thing for sure, Ayla gets to shower Eden tomorrow post pool time!!! Back home Fri, stay tuned.

3 comments:

  1. Thanks for taking the time to update even though you must be exhausted! Eden must be happy that everyone is going with her. glad it's going well.
    -Tami

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  2. GLad things are going so well. I am loving the blog helps me to feel like we are there! (though we are in spirit!). Glad you got a nights sleep sans child.

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  3. You are amazing for being able to keep such a detailed blog while going through all of this.

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