Saturday, May 2, 2009
Thursday, April 30, 2009
We've Got Connections
This may be a little confusing but I'm going to give it a go. Lauren's Auntie Robin has a boyfriend whose name also happens to be Steve. Robin and Steve go to law school together and we love him. Steve's parents live in/near West Palm Beach, Florida which happens to be the very place we just found out Dr. Paley will be relocating to. Steve's mom actually used to be a hospital administrator and Steve used to volunteer at St. Mary's. Robin took this snap shot of St. Mary's Children's Hospital for us while visiting West Palm Beach over spring break.
Wednesday, April 29, 2009
The FH is Not Too Severe
Dr. Paley called! He said, "First of all, to reassure you, it'd be very unlikely that the best treatment is amputation." He said most cases of FH are completely reconstructable. He talked about the studies that have been done comparing his patients to a group of children who had amputations. He said his patients' outcomes were just as good as the children with amputations as far as function. He said because the prosthetics are so good now, this means that the children in both groups essentially have "normal" function. As far as the psychological outcomes, his group had better outcomes. He also said most orthopaedic doctors are not familiar with his "super ankle" procedures and are most familiar with amputation as a treatment, therefore that's what most doctors recommend.
I told him Lauren was being treated with a harness for hip dysplasia. He said this treatment may be a waste of time because in many cases it's not really hip dysplasia, and rather a hip deformity associated with FH. That was disappointing because I thought we were close to having the hip issue resolved. Not to mention, she has been wearing a somewhat annoying harness for more than half her life that was possibly no help to her whatsoever. It will be interesting to see if the hip ultrasound results next Wednesday show any improvement.
So, we set up an appointment for Dr. Paley to see Lauren and for more x-rays. He said he likes to set up what he calls a "life plan" where he tells us what needs to be done and at what age. He is currently in Baltimore but is in the process of starting a new institute at St. Mary's in West Palm Beach, FL, which he sounded excited about. He will be there starting in June and our appointment is July 24th. He said Lauren wouldn't need any procedures until she's around a year and a half old.
I e-mailed Lauren's x-rays to Dr. Paley and this was his response:
The FH is not too severe. I am not convinced re hip dysplasia but no harm in treating.
See you in WPB.
Dror Paley, MD
See you in WPB.
Dror Paley, MD
I feel like we can take a deep breath for the first time since Lauren was born. See you in WPB!
Monday, April 27, 2009
Dr. Paley
I sent an e-mail to Dr. Paley tonight. I told him we're interested to know if he thinks Lauren would be a good candidate for his super ankle and leg lengthening procedures. Steve wouldn't let me use the word anxious in the e-mail but I'm so anxious to hear something back.
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