We were further devastated to learn this morning that Ramona has a chromosomal syndrome. Although what this will mean from her is unclear, it does carry with it some risks for immune system problems, mental retardation and palate abnormalities among other things. It is also possible that she would show no further symptoms beyond her heart defect.

Our plan to try and sustain her until the next surgery remains the same and it is unlikely that the effects of this syndrome on Ramona would be clear until later on. There is about a 10% chance that she inherited this syndrome from Andy or me and we are planning to be screened soon. If one of us does carry it, any future biological children would have a 50% chance of being born with it.

Right now it feels like the small channel of hope making it’s way to our hearts is slowing freezing over. I’m not sure what to pray for. Maybe that we will be strong enough to care for Ramona despite the moments of despair and hopelessness we feel. That the medical intervention and care that brought her into this world and has sustained her thus far is part of His plan for her. That we will be able to know the difference, if there is one, between our will and God’s will for her life.

Thank you for your love and support,

Jane.