Friday we went back to Boston for a follow up visit with Genetics & Orthopedics for Zachary. Genetics was first and was just a update appointment and they needed to go over a couple things that weren't clear for the research. Zachary was put on the panel for the Oculo-Ectodermal Syndrome case and is the 16th person with this syndrome. We will hear more back and learn more about it as time goes on since we agreed to have him in the study. So when we learn more we will keep you all posted.
Ortho appointment was a little more detailed. Dr. Spencer was pleased with Zachary, but on the other hand not really his development. She said he can just do the therapy at school since the other isn't really doing him any good. He has poor muscle tone in the leg and she isn't sure if it will ever be good again. We have to limit him with his activities, but yet let him be a boy. (Yeah right thats hard) We were also told we are looking at atleast 2 more surgeries and 1 being in the next year. His rod in the tibia has moved and is right across the growth plate and she is worried about that since there is a weak area in that spot too. She said we will discuss this more in December when we go back again. The other surgery won't be till his tween years because they will have to stop the growth plate in his right leg (his regular leg) so his left leg can possibly catch up.
He measured in at 48 lbs and only about 46 inches tall. He is small for his age group according to the growth charts.
Other than that, there is nothing else going on. Kids leave Saturday for camp with their nonnie and Marissa has a graphic design camp this week.
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