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!

Time for an update!

At least I have been told four times this weekend that some are waiting for an update. I decided to visit here tonight to see how long it had been. Only a month! :) I can't say that a lot has transpired since I last wrote in the medical sense. Over the last month it was decided that instead of presenting her to the surgery board last month that we would have a PET scan with EEG. We did that last Wednesday. Let me tell you, you just HAVE NOT LIVED if you have not gotten to experience at least ONCE in your life the craziness of what is known as "Bay Area" traffic. HAHAHHHAHAHAHAHA!!! OH MY GOODNESS. I have traveled to San Francisco plenty of times and usually leave room so I plan for 3 hours give or take even though Yahoo maps tells me it should be 2.5...

Imagine getting up early and packing your very sleepy three year old in the car at 5:30 and picking up a friend to travel with. You need to be in SF by 9:30. So in my OCD'ness I figured this gave us FOUR hours to get there, actually plenty of time to be there early, change Raegan out of her pj's and just relax...Again, HHAHAHAHAHAHA...For those of you from the area, we stopped at the rest stop in Vallejo, the one where you can see Six Flags. Changed clothes, used the bathroom, stretched our legs we were there MAYBE fifteen mins, then we hopped on the highway and made a quick stop at Pep Boys to have a light bulb put in the rear passenger side so I could politely use my blinker in traffic ;)  Another 15 mins. When I get on the road the clock says 8:20, I know we are an hour from the Bay, not as early for the appt as I would like but hey we'll have 10 mins to find our office... I kid you not as soon as I get on the road it is GRID LOCK! We passed the first electronic sign that I DESPERATELY hoped was wrong that said 98 minutes to Downtown San Francisco, WHAT???!!! That HAD to be wrong...Well, it wasn't, we arrived at the hospital at 10:20. Count it ladies and gentlemen, FOUR HOURS AND FIFTY MINUTES...I have NEVER experienced that...EVER.

Of course once we get to our appointment (we had called three times as we were stuck in traffic to let them know we were coming) we get the "run around" as to where we need to be. I am shaking inside because I feel so bad for being so late, I am irritated with "go here, no go here" but the nail in the coffin for me to almost lose my cool is when a sweet woman comes out to inform me that "No you are not scheduled to have an EEG with the PET scan, and the PET tech says he CAN NOT do that anyway" Ummm...as calm and as smiley as possible I assure them that Dr. Sullivan did indeed order a PET with EEG and that they should promptly call him, which they did. When we were finally escorted back we walked in at the same time as our EEG tech and the (older PET tech) very annoyed said "Let me see these leads, gonna be kinda hard to get a picture through METAL" to which the (younger) tech stood up, faced the PET tech and firmly with a slight smile said "We just performed this exact same procedure for Dr Sullivan last week and he received all of the information he needed" put politely in his place the PET tech gave a slight Hmph and turned and went in his booth (score one for the EEG tech). Anyway, we got her all settled, EEG in place, bubblegum scented gas mask and out she went, they put her IV in once she was out. As some of you know I can manage to hold my own and "take care of business" but although I managed to hold it together it really felt like the longest hour of my life.

So this wasn't the first time Raegan had been put under and the two other times came out of anesthesia just fine...I guess there is a first time for everything! As she came to she was very agitated and was trying to sit up and wanted to fight us as we tried to lay her back down so the nurse said to go ahead and pick her up and hold her. That was fine except she was like an agitated, restless, drunk. Wanted to do the opposite of what we needed and demanded it loudly :( At one point she was yelling to be put down because she wanted to stand. Fine. See your legs won't hold you, so then she's screaming for me to hold her. The nurse said that she was good, vitals were good, we could go home just have someone sit in back with her. Thank goodness our friend went with us but then again poor Clara. Raegan then proceeded to hit at Clara and then for the next 30 minutes SCREAMED at us that she wanted a taco. I WANT A TACO, GIVE ME A TACO, I WANT A TACO, GIVE ME A TACO...over and over, blood curdling, shoot me now scream. This of course was due more to the anesthesia and having not eaten at this point for 14 hours. It's not like at home where you can find a Taco Bell easily, so it was 30 minutes till we found our way to a Taco Bell drive thru where I promptly ordered a taco, burrito, soft taco and cheese roll up as not to risk the screaming 3yr old changing her mind. I KID YOU NOT she took ONE bite of that taco, said MMMMM, smiled and was PERFECT the rest of the way home! Mom on the other hand was done and ended up pulling over to let Clara drive so I could climb in back and sleep!

Where are we now?
Well, the PET scan came back normal which was said to be OK it just does not give us any additional information to our puzzle. We have officially failed three medicines. There was talk of us going to a steroid but honestly after talking with her drs we didn't feel it was the best route for now. So we have weaned off of that third medicine and are down to just one, the first one that we began this journey on. She still has seizures everyday which is hard and makes us just that much more aware of our need to trust the drs that are going to be working on our case.

What do we need?
Honestly, we need your prayers. As of now (and we have been I just wasn't ready to admit it) we are officially on the road to surgery. This coming Thursday Dr. Sullivan is taking her entire case and presenting it to his entire surgical team for review. It is a very hard place to be in. Before we had an official "timeline" surgery seemed to be a little abstract and I could put it out of my mind a little easier. Now, daily we struggle with the thought of what this may entail. Prayers that EVERY detail that is needed will be at the doctor's fingertips and the forefront of him memory, that every person sitting in that room will hear exactly what needs to be heard, that there would be Divine Intervention and Wisdom. We need peace to know that we are doing and have done all that we can.

So by the end of this week or early next we should have a little better idea of what will be happening. I know there are a lot of questions of what exactly will happen for her surgery, as for now we don't know exactly what will happen but we have a good idea but I figure best not to put that out there just yet until we talk to the dr.

We are so grateful to all of you that are standing with us during this journey. Be Blessed Always!