The Tristan Project

Our Second Visit with Doctor Kaplan at the Children’s Hospital of Philadelphia Late December 2009 to Early January 2010 – Today, we had our second visit with Doctor Kaplan at the Children’s Hospital of Philadelphia (CHOP) went well.  Tristan sees him only once a year because he does not have the more serious conditions that … Read more

The Extensive Developmental Testing at Kennedy Krieger Institute December 2009 – Tristan just turned three.  His spots of bone appear infrequently with his latest area a small cluster on his right thigh.  So we are thankful they do not rapidly spread.  We just got back from Baltimore after we saw the developmental pediatrician for Tristan’s … Read more

Developmental Delays Lead to a Blur of Therapies From the last post until Tristan was about the age of two and a half years old were really a blur in my mind.  We moved during that time from North Carolina to Maryland.  Tristan’s developmental delays were marked by hours upon hours of speech, occupational and … Read more

The Third Protector and Our Experience in Philadelphia November 2007 – The week of Thanksgiving we saw the specialist in Philly and he gave us a better outlook on Tristan. Tristan’s Third Protector is Dr. Fred Kaplan at the Children’s Hospital of Philadelphia (CHOP), and he is probably the world’s foremost expert on the diseases … Read more

Genetic Testing is Submitted August 1, 2007 – Well, we are back from Washington, D.C. tired, but hopeful.  Tristan was seen by several physicians who seemed to know less about the disorders related to osteoma cutis and the associated disorders than we did about the disorder.  This is, however, why we will have him looked … Read more

The Tristan Project is Born Nearly from the Start July 27, 2007 – All I can say is keep praying because your prayers are working!  Once we found out Tristan had osteoma cutis (OC), Michael and I practically have not slept.  Instead, we are immersed into this rare skin disorder to try to understand what … Read more

The Initial Pathology Report Comes Back First of all I want to thank those of you who have been praying and have contacted us by phone or e-mail.   I ask that you keep praying, because we are at the start of a very stressful journey.  Tristan’s initial pathology report came back today, and they were … Read more

Tristan’s Birth was Associated with Signs of His Early Struggles The early struggles of Tristan were not evident at first, but clues were present even before, during, and shortly after his birth. February 15, 2007 Tristan is already two months old and I can not believe it.  Michael and I are making it, but it … Read more