Timeline
July 18th, 2014 Dexter is born at 8:32pm!
July 20th, 2014 First time we hear "Craniosynostosis" and "Crouzon's" in relation to Dexter's head shape.
July 21st, 2014 Our pediatrician tells us to get in touch with the Neurology team at Children's Hospital within the week.
July 23rd, 2014 Dexter's first pediatrician appointment, Dr. tries to get us in contact with Children's.
July 25th, 2014 After many failed attempts to get an appointment with Children's, our pediatrician called and got us
right in. Lesson learned: Always have the pediatrician call the specialists
July 30th, 2014 Dexter's first neurology appointment at Children's @ 8:30am. CT Scan ordered to find out which
sutures were involved. Dr.s suspect some sort of genetic syndrome.
August 7th, 2014 CT Scan at Children's. Heard back from the Doc that afternoon saying only one suture was fused, the
sagittal, the most common suture to fuse. Follow up appointment scheduled.
August 27th, 2014 Back at Children's for the CT Scan follow up appointment and Opthamologist appointment.
Confirmed that the sagittal suture was closed and that we would need surgery to fix it. Opthamologist
was difficult because Dexter was still too young to get a good report. They said his eyes weren't
tracking together and we said "duh, he's only 5 weeks old." Opthamologist wanted to see him a month
after surgery.
September 8th, 2014 Genetics Appointment at Children's, we got in early! They suspect Crouzon's Syndrome.
Recommended genetic testing to be sure. Waiting on insurance to decide if we want to go ahead with
testing.
September 10th, 2014 Scheduled Dexter's surgery for November 6th, 2014. Really rough day for me. Thought it would
make it easier to have the surgery scheduled, I was wrong.
July 20th, 2014 First time we hear "Craniosynostosis" and "Crouzon's" in relation to Dexter's head shape.
July 21st, 2014 Our pediatrician tells us to get in touch with the Neurology team at Children's Hospital within the week.
July 23rd, 2014 Dexter's first pediatrician appointment, Dr. tries to get us in contact with Children's.
July 25th, 2014 After many failed attempts to get an appointment with Children's, our pediatrician called and got us
right in. Lesson learned: Always have the pediatrician call the specialists
July 30th, 2014 Dexter's first neurology appointment at Children's @ 8:30am. CT Scan ordered to find out which
sutures were involved. Dr.s suspect some sort of genetic syndrome.
August 7th, 2014 CT Scan at Children's. Heard back from the Doc that afternoon saying only one suture was fused, the
sagittal, the most common suture to fuse. Follow up appointment scheduled.
August 27th, 2014 Back at Children's for the CT Scan follow up appointment and Opthamologist appointment.
Confirmed that the sagittal suture was closed and that we would need surgery to fix it. Opthamologist
was difficult because Dexter was still too young to get a good report. They said his eyes weren't
tracking together and we said "duh, he's only 5 weeks old." Opthamologist wanted to see him a month
after surgery.
September 8th, 2014 Genetics Appointment at Children's, we got in early! They suspect Crouzon's Syndrome.
Recommended genetic testing to be sure. Waiting on insurance to decide if we want to go ahead with
testing.
September 10th, 2014 Scheduled Dexter's surgery for November 6th, 2014. Really rough day for me. Thought it would
make it easier to have the surgery scheduled, I was wrong.