Going to See Dr. Paley

Dr. Dror Paley is the world renowned limb lengthening surgeon, and the man we hope can help Elsie.


Initially, our plan was to see him once we knew if/when she'd be a candidate to begin limb lengthening surgeries.  Even Dr. Nowicki has talked about Dr. Paley and his abilities.  Recently, my husband and I have been talking about going to see him as early as possible to ensure we have the best advice right off the bat.  So, while on Dr. Paley's website I noticed his email address listed on the contact page.  I emailed him and here was our communication over a two day period.  Each time I emailed him he got back with me within hours! 


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From: Jackie
Date: Thu, 22 Dec 2011 11:38:44 -0500
To: Dror Paley
Subject: Daughter Born with PFFD


Hi Dr. Paley-
I have been browsing your website and truly hope we get the opportunity to meet with and work with you someday.  My daughter has unilateral PFFD and is 10.5 weeks old.  We're currently seeing an Ortho Pediatric Surgeon in Kalamazoo, MI.  When should we engage your office as to her condition, if working with you is our hope and goal?
If you're interested, I've added some pictures and an xray on a personal blog I started about our journey with PFFD.  It's www.elsiesleftleg.blogspot.com
Thanks for your time-
Jackie


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She is at a good age for you to come out for your first evaluation. I generally like to see them by around 12 months of age.
Dror Paley, MD, FRCSC
St. Mary’s Hospital
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Thank you Dr. Paley-
 
We will work with your office to visit prior to her 1st Birthday.  I'm guessing it would be most beneficial to visit after an MRI, so that you can review it as part of your initial evaluation?  Would you suggest this?

Thanks-

Jackie
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I prefer to get the first MRI at 18-24 months. For now just come in for an evaluation and new xrays that we will get on site.


Dror Paley, MD, FRCSC
St. Mary’s Hospital
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So we are no longer getting an MRI as early as we thought!  This thrills me because I won't have to put Elsie under anasthesia as young.  Also, if it's under his direction, I completely trust it!  So it's set; we've set up our first appointment to go to Dr. Paley's in the beginning of June!  YAY.  Plus, who wouldn't look forward to a trip to West Palm Beach, FL. 

Just to be clear - We REALLY like and trust our pediatric ortho doctor here (Dr. Nowicki).  However, we just want to make sure we do all that we can, as early as we can for our Little E. 


You can also find Dr. Paley on facebook.  <--------- click there!!

Life without the Harness

So, I'm a bit behind on updates.  Elsie has been out of her harness for 3 entire weeks as of today!  What a blessing.  I remember with my oldest daughter, Mila, baths, changing clothes and even changing diapers seemed inconvenient.  However, after 10 weeks in a harness and doing the same tasks - they are much easier without the harness and no longer seem inconvenient. 


I saw on pffd.org that another mom's child was in a harness.  She too could understand the desire to have a squishy baby 24-7.  Let me tell you, it's been a great blessing to have her back to normal! 


Since taking her out of the harness we haven't seen any signs of pain.  It is evident that whether dysplasia or fracture or  whatever, the harness did the trick! 


Here is a picture of Elsie the last time she wore the harness!  How cute :)

It was a good time to go because Little E was about to outgrow it!

The only difficulty we faced from losing the harness was Elsie was use to sleeping in it for 10 of her 11 week life.  The straps kept her legs in the air (as shown above) the entire night.  So the first week without the harness Elsie had a hard time staying asleep.  She expected her legs to levitate :)  But we've worked through that and sleep is back to normal. 

Needless to say, we haven't missed the harness!