Organization for Keira's Epilepsy Journey

Referral to Doctor in Boston in place.........check   (insurance is covering 100% even though out of network, but we had to get prior approval. Our Ped had to write a letter to the insurance company)

All medical records at the Dr.'s in Boston ...........check

Referral to the Storey-Smith Clinic for a full OT-PT and Speech eval.........check

Referral to Child Developmental services..............check

Referral and appointment for a feeding clinic at Maine Med.........check

Researching things that might be causing the seizures and making note........... check

Still need to:

Write all questions down for Dr. Expert.

Get copies of studies that discuss things similar to what is going on with Keira.

Figure out how to get food into the babies body so she can get some meat on her bones.  She is too skinny.
I am guessing 97th for height and 5th for weight.

Good note:

Insurance covered almost all of the $3500 one day stay at Children's Hospital Boston even though it is out of network. That was good news for the day.