To many shunt revisions

Hi!! My name is Kristie and I have a three and a half year old with hydrocephalus.  She has just had her fourth shunt revision on Sunday.  
She is developmentally delayed, has low muscle tone, and is only able to say about ten words. She is able to communicate with her family through sounds and a few hand signs.
I am looking for other parents who have children with hydrocepalus who will be willing to discuss some issues, concerns, and just some things that they have been through.
Hope to hear something soon!!