Sometimes I feel as though my daughter's life revolves around assessments and evaluations conducted by various medical professionals. I get frustrated because Ellie is a normal, beautiful little baby who just so happens to have 3 spindly shaped 21st chromosomes. Why can't we just enjoy this precious neonatal time without putting Ellie through all of these tests and evaluations? Why must we spend all of these hours each week in a doctor's office, meeting with DSACT, & ECI and why must I spend so much time on the phone coordinating these services rather than bonding with my daughter?
Do not get me wrong, we are blessed and truly recognize how lucky we are that Ellie is so healthy. We are not asking for pity or saying woes me. We know that many families who have children with DS and those who do not have it much worse. We are not taking for granted that Ellie is developing on tract and is free of cardiac and feeding issues. We do understand the need for all of these assessments--cardiology, GI, developmental, endocrine, ophthalmology, genetics, audiology, etc (Children with DS are at risk for cardiac defects, celiac disease, mental retardation, developmental delay, hypotonia, hypothyroidism, eye & ear problems, and leukemia [that one scared/scares me the most]). We realize that it is important to screen for all of these issues to either rule them out or to implement early treatment. We understand that and are grateful that thus far Ellie seems to be a healthy & thriving baby girl who we love so much. It is just sometimes I am so frustrated and say "this was/is not how it was/is supposed to be! This time was/is meant for bonding, playing, & enjoying these first few weeks".