The thing about having a rare or mysterious medical condition is that you need a doctor who's got your back. Thank you, Lord, that we do!
Maggie's primary pediatrician is amazing. He called me last week because he, too, was frustrated that Scottish Rite wasn't seeming to help Maggie or realizing the urgency of the situation. He said that we may have to take Maggie to Houston or out of state to get help because it doesn't seem like they are going to help her at Scottish Rite(probably cause they don't know what's causing the problem in the first place).
We are still going to see the neurosurgeon and craniofacial plastic surgeon (both who are supposed to be "the best" in Dallas). And I have hope that maybe they will have the perfect solution. But if not, it is nice to know her pediatrician is going to talk to his colleagues and try his hardest to find the perfect doctor for her. I told him that we will take her any place we need to go and we will. I don't know how, but we will figure it out!
And just as I am writing this I got a call from Scottish Rite and the doctor there wants to meet with us this week after her pediatrician called this morning. Hmmm...wonder what we said that all of a sudden he has time for us:).