Understanding Lu

Yesterday we left here at 6:30am and returned at 9:30pm! Our journey took us to the Bronx in New York City...one of the last places I would ...

Chad and I decided several weeks ago to schedule an appointment for Lucy to see a pediatric neurologist in New York City that specializes in...

For as long as I have been having dreams, I have occasionally had these two different kinds: one where I can only open my eyes for a few sec...

At Lucy's 9 month appointment last year with Dr. Kilian Brech I first shared my concerns regarding Lucy's motor development. He said...

On Monday we knew our life had become drastically different than we had ever imagined it would be. Today blew Monday completely out of the w...

Today Dr.Coffman, the neurologist from Pittsburg called and confirmed that Lucy does in fact have Rett Syndrome. It has been a very long and...

So this past Thursday marked 5 weeks since Lucy had her bloodwork drawn. We heard back about the blood part of her metabolic test and it was...