She will have surgery...

I will start by saying this is a road that we never would have imagined ourselves on. In fact I am positive every parent that has had to walk through any difficult situation or decision could say the same. We have traveled the road of grief, anger, disbelief and why us, however at the same time we have traveled the road of delight, happiness and comfort from our friends and family. Raegan is truly a trooper and amazes us everyday. She began her seizures again on July 12th of this year. Since then she has only been seizure free MAYBE 10 days, that being that we did not physically see a seizure but more than likely she had them "behind the scenes".

We have been beyond blessed with our local neurologist, Dr. Asaikar, this man is more than dedicated to his profession and his patients. Yesterday was his "day off" which only means he's not in the office. Yesterday found him in San Francisco to see another patient that was having a MEG scan and since he was already there made a personal visit to Dr. Sullivan our neurologist at UCSF. I was SO grateful that the two of them had the opportunity to sit face to face and review all of the tests that have been done as it proved insightful to both of them. So here are some facts:

1. EEG in July showed seizure activity that began us on this path with a full Epilepsy diagnosis and started our medicine journey

2. MRI in July according to Dr Asaikar showed an abnormality on the Left side, Dr. Sullivan said his team disagreed and that the MRI was 'normal'

3. MEG scan was normal but did confirm seizure activity in the same area as the EEG

4. PET scan with EEG was reported to us as normal by the radiology report

Here is what I learned from Dr Asaikar and Dr Sullivan today after their meeting and the surgery conference.

It was determined that Dr Asaikar's assertion that her MRI was NOT normal after further review with Dr Sullivan and another neuro radiologist reviewed it that there IS a subtle abnormality on the left side

The PET scan that I was told was normal after Dr Sullivan had only read the report turned out to also show a subtle abnormality on the left side once he and Dr Asaikar reviewed it yesterday and was confirmed today at the conference.

This proves to be a good thing as all of these tests are now more consistent which will help during the next process. The EEG she had done with the PET has also revealed that she is having significant seizure activity that we are not seeing. We had hoped that we would not have to add another medicine but we now will begin an oral steroid until surgery.

So what is the surgery?

It will be a two part process. The first being an Inter cranial Grid Mapping. Raegan will be taken into surgery where her skull will be opened. A grid map of electrodes will be placed directly on her brain. She will then be closed up leaving the grid map in place. She will be put in the ICU for 5-7 days where a series of observations will be made to her movement/motor skills, language and such. The purpose of this process is they need to as accurately as possible remove the area that is causing her seizures. Although testing has pointed out the area they need to determine the exact borders for the affected area so that not too much and not too little is removed. Once they gather their information then it will be determined what and how to proceed with the removal. I believe the recovery after that portion is 3-5 days.

There certainly are risks to this type of procedure but getting as much exact information is crucial so that best case scenario would be total seizure control without any affect to her motor skills, language and overall cognitive development.

As you can now tell we have been having to deal with a lot of decisions and heavy hearts at times as our daughters life is in our hands. We continually place her back in God's hands and ask Him to guide us and the doctors through this journey.

We love you all and are beyond blessed by you!