Crystal Balls

I haven't written much about Baby Dee's Genetics appointment she had in early December where she was dignosed with CdLS. She has another Genetics appointment next week so Bio-Mom and Social Worker can go and begin to wrap their minds around what The Other Mother and I have known since the baby came in October. A dear friend had pointed out that baby Dee looked JUST like her daughter with CdLs. Indeed true.

Now we have a diagnosis to explain her many medical complications. Cornelia de Lange Syndrome (CdLS). The Best News is we have a framework for a plan of care and a set of protocols based on her diagnosis. I am grateful that if or when she moves to the other side of the state to be near her Bio-Mom, Baby Dee will now have an appropriate plan of care and her growth and gains will be measured in the context of Cornelia De Lange Syndrome (CdLS), rather than measured against the general population. For example.

At five months and one week she weighed 9 pounds, 3 ounces. She's so tiny, her weight can't be plotted on the graph on the percentile charts for babies her age. How freakin' sad is that to say "She is at the ZERO percentile". But for CdLS kids - she is right smack dab in the middle range to upper range and is doing pretty darn well, thank you very much!!!

Anyhow, the piece I am still processing is how I feel now that I have met her Bio Mother and see her regularly at medical appointments. In early December she first came to a Gastroenterology appointment with the program director of the Drug-Alcohol rehab program where she lives. She is a very sweet woman who LOVES, LOVES, LOVES her baby. One of the many sad parts about this situation is that Mom has mental retardation and learning disabilities which clearly impact her ability to process complex information and care for a medically challenged infant. A healthy infant she might manage, with supports, aides, a network etc. Since the summer, she is doing OK parenting her son, aged 7 or 8, who was in previoulsy in foster care for a year. But a school aged boy is different from a medically complex baby.

I am grateful that Mom has elected to stay here in our part of the state for a few months so the baby could stabilize (medically). The Good News is Mom said this , BEFORE the baby's appointment with Genetics, and well before learning of the diagnosis. That gives me hope that she either made the right decision or was successfully coached to make the right decision to stay at the rehab program (even though she "graduated" and could move on) just to be near her baby. Either way, she made the right decision: Good Work Bio Mom!

I just don't know what will happen - what will be "BEST" and what everyone's lives will look like next month. Sometimes I HATE not knowing the future. Don't you????