These are some of the things we have learned along the way.  We hope other families who are facing some of the same challenges can use this information.  Some of these things we have learned the hard way and our hope is that this information could help others to be more knowledgeable without some of the stresses we encountered. 

Please realize that all babies are different.  Brandy, in many ways, is completely out of the norm.  What has worked for us may not work for someone else. 

• You are your child's advocate.  You have the responsibility to make decisions that will be best for your child.  You also have the RIGHT to make decisions that you feel is best for your child.
  

• Make it your business to know exactly what is being done (example:  what and how much of medicines).  Even though medical personnel are great, they are just human and some mistakes can be life altering.
  

• Find out as much as possible from reliable sources.  If you know a lot about something when you go to a doctor's office you are able to be more bold in possibly getting something done.
  

• Ask questions--Most medical people are pleased with parents who are interested and want to know as much as possible so they are glad to answer questions.  (There are always those who are the exception.) You won't know unless you ask.  There is NO question to dumb when dealing with your child's life. 
  

• Request/Demand that you give medication to your children when possible.
  

• Stay with your child at all times for all procedures and transports if possible.
  

• Research options to problems you are experiencing before agreeing to anything.  We wish we would have known about other options to deal with reflux before agreeing to surgery.  From what we have researched, most kids do fine with Fundos and G-Tubes.  Unfortunately, Brandy has been in constant discomfort since that procedure. 
  

• If you have finally reached a point where death is evident, contact Hospice. They are wonderful!
  

• Hug your kids every chance you get because you never know when they will be taken away from you.  Don't take anything for granted.