At Seattle Children's Hospital...

I was warned before our trip that this doctor was very blunt and would not sugar coat anything. He would tell it like it's, good or bad, and whether you wanted to hear it or not. He also had the reputation of giving worst case scenarios.  That was all ok by us, we just wanted answers.
Some of the key points that we left with:
-Tori definitely has Lissencephaly
-She has a very rare, much milder form. In his database of 2200+, he has only seen 10-15 like her.
-She will probably walk, but quality is unknown.
-Speech delay will be significant. Most do not develop beyond single words/short sentences.
-It is his belief that she will always be special needs and need long term care.
-Seizures will be a major struggle.
-Lifespan should be well into adulthood.
-The cause of her Lissencephaly is from a gene that has not yet been identified, and so we have been enrolled in his research study to try to identify this gene.

Although this was much better news than they typical cases we had read about, and we were thankful for answers, it was all hard to hear...again. Any hope that the doctors had all been wrong was gone.

-Tori in Seattle-