Fighting the big fight!!!

This week was sooooooo productive in many many ways. 

• On Tuesday, I finally got a hold of Dr. Bergin from Boston Children's. It turns out that she never received any of my phone messages. I don't know how many times I had called to get the results of Izabelle's stay at Children's in December. She finally outlined the EEG data for me over the phone and sent me a fax at work of the final report from the Neuro team. I was able to expedite our next appointment for March 3rd. We will be meeting with both Dr. Bergin and a Dietitian to discuss the Ketogenic Diet.
• On Wednesday, Kristine Bennett from the Epilepsy Foundation of New England was able to attend an 'emergency' IEP meeting for Izabelle. She was a fierce resource to have in my ball court and inspired the entire team. I was taken back for a moment by how intensive it will be to create a safe educational program for my daughter especially when she begins the Ketogenic Diet. I am getting Izabelle a ONE ON ONE!!!! 
• I met with Mr. Bailey from AOS 93 on Thursday to discuss Izabelle's superintendent agreement for next year. I also spoke with a delegate from the Department of Education to get advice as to how to proceed with this process. It seems I am doing all the right things. I will see what both supers say… I hope it is in the best interest of my daughter and if not I will go to the Governor! lol
• We have started a Gluten Free and Dairy Free diet to help Izabelle's stomach that has been in knots since her latest dosing and med changes. If its not better in two weeks Izabelle will be going to her PCP. 
• I got referrals for a multitude of tests for Izabelle from her neuro. in Portland and PCP. This includes a neuropsych. eval, developmental testing…etc.

I am truly astonished by how many steps there are to getting what my daughter needs. It's sometimes totally overwhelming especially because I am doing it all on my own. 

On deck for this week are:

• Visiting the Department of Human Services to check on Izabelle's application for the Katie Beckett option for Mainecare (health insurance)
• Visiting the Social Security office to get Izabelle declared disabled so we can get other state benefits.