Makenna has an appointment at Children's Hospital in Boston on February 1st. This is the same hospital where she is enrolled in the research study. You can link to their website here: Engle Laboratory. The Laboratory studyies Congenital Cranial Dysinnervation Disorders (CCDD's). HGPPS is one of these disorders. The research team has been a great source of information ,support and comfort during the last several months. I am excited to meet them and have them assess Makenna.
Makenna will have a full neurological evaluation as well as an ophtalmologic assessment.
What I am most looking forward to, however, is meeting the other two children I have found along this journey. There are two little boys with similar stories and histories as Makenna. We will all be seen on the same day at Children's Hospital!
I am hoping that the doctors will be able to offer insight and confirm a diagnosis. But I think it will be just as interesting and helpful to have three moms sit down and compare notes on the road we've traveled.
Makenna will have a full neurological evaluation as well as an ophtalmologic assessment.
What I am most looking forward to, however, is meeting the other two children I have found along this journey. There are two little boys with similar stories and histories as Makenna. We will all be seen on the same day at Children's Hospital!
I am hoping that the doctors will be able to offer insight and confirm a diagnosis. But I think it will be just as interesting and helpful to have three moms sit down and compare notes on the road we've traveled.
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