Hey everyone - Just wanted to post a quick update on the latest with the girls...
we heard from the geneticist at Riley and the panel that they ran on Lilys DNA came back normal. This really just means that whatever is causing this cranio issue they don't have record of to compare it against or it just isn't one of the major tests they ran. They will dig a bit deeper and we should hear something within a couple of weeks. I guess this is a good thing because it isn't a major syndrome or something. I would say it is unlikely to be a syndrome- just cranio by itself.
Our family is going to participate in a research study completed by Seattle Childrens Hospital inconjunction with two universities to further ID what causes cranio. We are an interesting case because it has affected all three kids with two different mommies. We are probably the only ones with this spread out there. We are SOOOO special...
Lily has been doing great with all her therapies. She started a brushing program for sensory integration this week- it stinks because it is hard to remember to do...She also started Craniosacral therapy. The therapist was very impressive. Clearly it was doing something just not sure what ;-) She has days her auditory comprehension is pretty darn good. And others it is amazing she has any speech at all. I am certain with all the help she is getting that she will be fine. She will have her 30 month evaluation for the possibility of placement in a developmental preschool soon. Not sure how to go on that deal. We shall see what if anything she will qualify for.
On a bummer note Dr Vicari is not covered on our new (or old) insurance. So we will either have to do the cosmetic stuff with someone else or wait until circumstances change and he is covered. It will likely be the latter. He is lovely and the best Craniofacial surgeon. So there it is.
Well gotta go watch a movie. We are so enjoying the simplicity of just being for a while. Things have been so crazy the last few months it is wonderful just to enjoy the holidays.

Julie