Dear Praying Friends and family,
It's hard to believe that we've been home with Roman for nearly three months. Our last update was back at the two week point. We've been extremely busy with family life and non-stop doctor's appointments and have had little time for blogging...sorry. We appreciate your continued prayers and encouragment.
In the last few weeks we've learned that Roman has a rare genetic condition called TAR Syndrome, which is short for Thrombocytopenia with Absent Radius. All people with this condition are characteristically missing a radius bone in both forearms and have a dramatically reduced platelet count at birth resulting in potentially life-threatening haemorrhaging. Many children born with this condition require multiple blood transfusions in thef first year of life and are very vulnerable to illness. The good news is that over time platelet counts tend to grown on their own and "normalize". Learning that Roman has TAR Syndrome has helped us understand why he was so sick in the first three years of his life and why his younger sister may have died. It has only been in the last year that TAR Syndrome has been identified with a micro-deletion of the first chromosone. The incidence is 0.42 per 100,000 live births.
So what's all this mean for Roman? Well, first and foremost, this means that God has preserved Roman's life--allowing him to survive with this condition undiagnosed for six years and without any blood transfusions. Roman has a few other birth defects that don't define t
his syndrome but can accompany it. We've learned that Roman has moderate hearing loss in his right ear and total conductive hearing loss in his left ear making speech learning very difficult. He has been fitted for hearing aids that should help. The good news is that Roman does not have any of the other major complications that can accompany this dissorder--i.e. heart problems and kidney problems being the biggest. He is gaining weight and growing tall. The big mystery at this time is how much of Roman's severe developmental delay is the result of living in the orphange and how much is the related to this syndrome. Roman learning potential is still unknown to us.
his syndrome but can accompany it. We've learned that Roman has moderate hearing loss in his right ear and total conductive hearing loss in his left ear making speech learning very difficult. He has been fitted for hearing aids that should help. The good news is that Roman does not have any of the other major complications that can accompany this dissorder--i.e. heart problems and kidney problems being the biggest. He is gaining weight and growing tall. The big mystery at this time is how much of Roman's severe developmental delay is the result of living in the orphange and how much is the related to this syndrome. Roman learning potential is still unknown to us. 
Roman continues to do very good. He enjoys playing outside, attending church and Sunday school, playing the piano, riding in the car, playing with his sisters and brother, coming along with me as I teach gymnastics class, and (most recently) going to school. That's right, Roman started first grade at Silver Lake Elementary School here in Middletown this morning. He loved it! We are so grateful for the wonderful and professional folks that provide these special education resources in our community. The pictures above are from his first day at school.Roman has a hard time sleeping through the night and we are not quite sure why? This means we are not getting a solid night's sleep. Roman gets up several times and wiggles his way into our bed...he prefers to sleep right next to us.
We still marvel every time we look at him...he is so tender and precious...a masterpiece.
