Jacob’s Journey with PFFD

We just passed the half way point. Jacob saw Dr. Paley yesterday (shown below) and Dr. Paley measured 4.5 cm of new bone growth! That’s great news as Jacob is over half way towards our goal of 8cm.

Jacob is having some trouble with his knee bends. They seem to be the most difficult part of this whole process. The past few weeks his knee Range Of Motion (ROM) has been about 50 -55 degrees. If it drops below 45, we will have to stop lengthening. Dr. Paley has insisted that we get 65 to 70 by our next appointment in two weeks. Obviously, we don’t want to go home without achieving our goal of 3 inches, so we are working closely with th PT staff and have devised a plan that seems to be working. First, Jacob is on a sticker plan, where he earns stickers for varying degrees, like 60 would be 3 stickers. 25 stickers and he gets a cool toy, like an action figure. The other key to our success with knee bends seems to be “Return Of The Jedi” Jacob watches the movie right at the end when Luke defeats Vader, and the new death star is destroyed. It really motivates him, so who am I to argue with “Jedi.” Today Jake achieved sixty and we were thrilled, because if Jacob keeps it up, we won’t have to do knee bends twice a day. Believe me, it isn’t fun! I will upate soon on our knee bend progress!