https://www.pffd.org/blog/1047 If you are new to PFFD - I recommend starting with the PFFD book en https://www.pffd.org/node/496 <div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>Noah was seen at the Shriner's Hospital in Greenville, SC in November. The doctors there are wonderful, they truly made me feel at ease with the decision to amputate. My husband and I are chosing amputation over lengthening more for the quality of life that we want Noah to have. Leg lengthening is said to be a hard process for any child to endure and the possibility of having to amputate as an end result is high. I understand my son could keep his own leg and look "normal" however Im confident that the sooner we amputate the sooner he can begin living his life as any child would.<br /> We are returning to Shriner's Hospital in March to meet with the genetics team, we offering them to draw blood and run tests to see if there are any links to enhance the research on why PFFD occurs. In March we will also be scheduling Noah's amputation date. We have been encouraged to do it no earlier then August when he will be 12 months old but no later than 15 months old, so that he can begin walking like anyother baby. I'm finally coming to peace with our decision for Noah and Im confident that he will be a healthy, happy, and active young man. I cant wait to see what his bright future holds. Thanks for all the support from the website and I will keep everyone informed on my sons journey. In the mean time all of our children are in my thoughts and prayers!<br /> Happy Holidays to everyone...<br /> The Robbins</p> </div></div></div> Sun, 14 Dec 2008 04:33:24 +0000 NoahsArk 496 at https://www.pffd.org https://www.pffd.org/node/496#comments https://www.pffd.org/node/481 <div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even"><p>Noah, our son, is just over 2 months old and has been diagnosed with PFFD and fibular hemimelia. My husband and I were terrified to find out something was wrong with him the day he was born. After the appointment with the orthopedic, David and I are optimistic that Noah will be able to live a "normal" life. We have joined the site in hopes to connect with other families dealing with PFFD.<br /> After speaking with the doctors it seems they believe the best treatment option for Noah is VarNess rotation or Symes Amputation. As daunting as both options seemed at first we are just researching our hearts out to make the best decision for our family. We would like the route of treatment we take provide Noah with the ability to play as any child would and be the best treatment for him in the long run. We are looking for any advice and appreciate any help anyone may offer.<br /> We are so happy to have found this site and are looking forward to learning more about our sons condition.</p> <p>Noah's Mom &amp; Dad, The Robbins</p> </div></div></div> Sun, 12 Oct 2008 01:44:30 +0000 NoahsArk 481 at https://www.pffd.org https://www.pffd.org/node/481#comments