How will I feel?

Looking at the dates of the blog it amazes me how time can feel like it is standing still. I could have sworn that it was MONTHS since I last updated yet it's only been a month. For us so much has happened on a daily basis but when I sit down to write about it, it doesn't seem like "that much" maybe to an outsider.

Since our last update I think we have tried 3 new medicines. Three. Really? It is so hard to live with a condition that is not easily controlled and one that for the most part society is not aware of the everyday struggles. We tried a Prednisone steroid. We were to take it for a three week course 3 times a day to start, well we made it through dose one and two of day ONE and by five o'clock she was turning yellow, jaundice yellow. Stopped that med asap and started the next round with Topamx. We did make it through 4 days of what is called a "honeymoon period". Let me tell you on this journey one of the harder things is being in the honeymoon period and you start to relax thinking THIS IS IT! only to turn around and watch a seizure. It just makes you want to lay down and cry and most of the time we do. It's just so hard. We continued that for another week or so while we tried to decide what our next step would be since it seems all we can do now is to "bridge" to surgery meaning let's get the best control for the longest time with the least side effects. We were down to two options. We could try steroids again which we knew she already responded poorly to or Clobazam. Feeling like we needed to do something different yet again we have opted for the Clobazam. I sat in Dr. Asaikar's office this last Monday and what I thought was going to be hard for me to do in starting the Colbazam became a no brainer. She had a seizure while waiting for him and feel immediately asleep. We were able to for the first time in a long time sit and talk uninterrupted (she's usually bouncing off the walls). He shared with me that during her EEG she had with her PET scan showed her abnormal brain activity was 80%. WHAT? EIGHTY PERCENT ABNORMAL. Can you imagine having your brain misfiring 80% of the night when it should be resting and repairing itself? As much as we did not want to do the Clobazam I had no problem driving straight to the pharmacy to pick it up. She deserves the best and this abnormal activity is not it. We are still seeing a seizure or two during the day BUT we can really tell she is rested better. The first morning after her first dose she had school and her teacher said it was the most engaged, playful and happy she had seen her. Although we are still in our "honeymoon period" I am happy for her that maybe she can feel a little more back to her old self for a bit even if it does mean that she is a little more wired before bed :)

So FINALLY to my title "How will I feel"? To think back that in a VERY SHORT period of time we went from having seizures in July and being told she might end up with surgery, August going to San Francisco to she will need surgery, September more testing to present for surgery, October presenting for surgery and confirming yes she will need it. It has been such an up and down process and truly don't know how we have manage the roller coaster which brings us to November. Yesterday I had the girls out for a walk and my phone rings "UCSF MED CTR" is on the i.d. YAY I have been waiting for a call from Dr Sullivan to talk about her new meds. However it wasn't him. Here is what I heard "Hi Mrs Rockenstein this is Melissa from Dr Auguste's office, I'm calling to let you know we have confirmed her surgery date" It amazes me how things can happen in a FRACTION of time that feels like an eternity I guess kind of like the saying "My life flashed before my eyes" because here is what went through my head in the nano second before I said "Oh hi Melissa"...

Oh Jesus PLEASE let it be sooner than February 11th, OH SHIT she has a date, am I going to pass out, I need to sit down oh wait I can't I'm on a walk... as I looked at Raegan walking ahead of me really all I could do was think "well here we go"

"Oh Hi Melissa" as I tried to smile through the phone. She responded "Hi, I just wanted to let you know that we have finally been able to confirm Raegan's surgery for January 28th"...

The rest of the conversation was lots of details with questions still out there but there it is:
January 28th. We will have the first part of her surgery that day, testing in between, and the second part which will be the removal of the affected area on Friday February 1st. It feels so close yet so far away. George and I had finally settled in our hearts that we are ready for surgery now, as it has been hard to watch her have seizures everyday and getting to a point that it was affecting her daily life and ability to interact.

I really thought I would be a torn up wreck, crying, freaking out but instead I took in a nervous breath let it out and thought "OK here is the next part of the journey"... as I woke up this morning I realized that having a date to a degree has allowed me to relax if just for a bit. It was the unknown. Now we can truly plan our holidays and still have time to organize and prepare.

We love you all so much and it really is the support of our friends and family understanding when we don't want to get out or talk or need to get out and to talk that helps us through. Many blessings to you!

OH and PLEASE take the time to educate yourself on Epilesy. November is Epilepsy Awareness Month. Sport some purple in support and visit EpilepsyFoundation.org for more on Epilepsy.

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!

Life is normal...?

So here we wait and wait and wait...we have been told that Dr. Sullivan will be presenting Raegan's case to the surgery board. We thought it would be this week BUT they have decided that we need one more test to try to get as much information for this crazy puzzle. So we will have a PET scan with an EEG on October 10th. Time is just going to tick, tick, away and not fast enough for us. It really is a double edge sword because you just want all of these tests and results NOW but if we had them now then that would also put us possibly closer to the thought of surgery. However it is really difficult to see Raegan having seizures everyday. We usually see two a day but lately have seen as many as four. Sometimes we get lucky and she bounces back right away and other times she is wiped out for a couple of hours. A mom had asked a question "How do your other children hand the epilepsy"? I at the time didn't respond because Carley I thought was just too little but she proved us wrong shortly after. As Raegan had an episode Carley patted her leg and said 'It's ok Raegan, it's ok" (bring out the kleenex) this particular time Raegan was wiped out and cried to go lay in mommy's bed. I obliged but what followed more than melted my heart. Once I had Raegan tucked in Carley crawled in too even though she had only been awake less than two hours. There she laid still as a mouse for 45 minutes with her sister...

On a happier note we have gotten to spend some time together as a family. A trip to the circus proved to be a lot of fun. Sno Cones, cotton candy, the animals! I also slipped away with the girls to Lake Tahoe. Even though we endured car sickness with Raegan that could have proved to put a damper on things we just rolled with it. We had so much fun with Aunt Shannie! Tonight Raegan decided that she was going to go on a roll down the driveway, she squealed in delight! 

As always be blessed dear friends! Until next time...

Changes are in the air...

So it's been awhile since I've updated. Life is good and blessed always even on the days I just want to curl up and stay in bed. Raegan is such a little trooper and doesn't complain at all. She is transitioning to a new preschool here in town. It is only about 5 minutes from the house and will be going two days a week. It was very hard for ME to make the transition. At our "old" preschool we were at when she began her seizures this time they were with us every step of the way as we started new medicine, they watched her video to see what her seizures looked like and it was just a comfort since we were all walking this new path together. So as we left Ms. Melissa, Ms. Kelly and Ms. Suki it was with tears as I felt my safety net was gone. Short lived anxiety though I guess since we went to visit for the day together before she started and she had a seizure so I was able to show her teachers. Well, that proved positive since the first day by herself (momma was anxious at home) sure enough she had one. Her teacher recognized it right away and now I feel like I can trust she won't have to go through an episode alone.

Several people have asked what the results were from the MEG scan that we went for in SF. It came back and confirmed what the EEG had told us. She has definite abnormal seizure activity in a specific focalized area on the left side of her brain. However, they still do not "SEE" an abnormal spot on the MRI. Not that there is not an abnormal spot but they don't SEE it which means there is no way at this point to define the borders of an abnormal area. So what now? Well, Dr. Sullivan is presenting her case to his surgical board/team the third week of Sept to see where to...only a little nerve wracking right?!
In the mean time we have added her third medicine to the cocktail. We are trying to wean her off the second one she was on as her behavior was OFF.THE.HOOK, impulsive is an understatement! Unfortunately we have outlived the "honeymoon" period of six days without a seizure and we had to up her third medicine today :(

To say this road is up and down is an understatement. It is so hard to go days without a seizure to see one. I had posted a video of a teenage girl who has been battling Epilepsy for three years and she said she had to decide to TAKE CONTROL and not let the Epilepsy CONTROL HER. What sounds like something simple is actually very difficult. I have spent the last almost 2 months SEIZED by Epilepsy. I have not wanted to leave the house, stopped going to play dates, have sat at home all day everyday. It is not easy to move on but this last week decided to TAKE CONTROL back. We have been out more and have even gone for a few walks. My cleaning supplies were actually put to use and I was able to get out of the rut a bit. However I still ask for grace and patience if it seems like I have ignored you or play dates it's not 'intentional' it's a process.

Love and Blessings to you all!!!

This is a LONG one!!!

So it seems like a lot has happened since our first trip to San Francisco. As I wrote I let you know that we were waiting for our MEG scan August 8^th. Wouldn’t you know that we got a call LATE on the 6^th saying that our authorization was still in the ‘pending’ files of our insurance. UGH! Are you kidding me? Do you realize I have been waiting on pins and needles? Then there was the JOY of finding out that when I tried to cancel the hotel we would be charged the FULL price even though we weren’t going down. I was able to contact the owner, explain the situation and he graciously refunded our money. THEN at 4pm on the 7^th we got the call that we were a go!!! Nothing like keeping a girl on the edge of her seat! SOOOO…we loaded up and headed to San Francisco. We did our best to make the best of what had been a couple of crazy days. We decided to rebook with our hotel The Inn on Broadway again. We recommend them if you need a good centrally located place downtown. Since daddy already works in SF we just met him there in fact it worked perfect he got off work got to go to the hotel, do his reports and catch a quick nap! We went to Pier 39 for dinner and kept Raegan awake as long as we could, 11pm late night for her! Since she had to be sleep deprived we were up early at 6 and out the door by 7. We were so blessed to have my sister, Aunt Shannie, go with us. We enjoyed a wonderful early morning walk up and down the hills so we could tire her out…

Let me just tell you it feels just a little ‘fish out of water’ to try to meld into the hustle and bustle of the city. The noise, the air, the cars, the people but as crowded busy as it is at the exact same time there is just a calm of everyone you pass.  Part of this journey has also been new medications. Let me just say that the second one we have added has added the challenges of behavior that we have not had to experience with Raegan. So of course was in fine form. I LOVE getting on an elevator to have her melt down or do the limp body drop as she whined “I want to…. Or I don’t want to….” She was THAT kid. The one have a complete fit. What was/is hard for me is that if I didn’t know that this was because of her medication I would be all over her to behave but it was/is so hard to come down on her when I know that this isn’t “her” and she can’t help it. So we found our place to sign in however we were so early that we found a beautiful garden to let her run.

So our time had come to go back upstairs and wait for them to call her. She is SOOOOOO tired, whiney, crying I am just praying to God that I can just have grace and patience and try not to care that it felt like every eye was on me. So we go into a small waiting room, should be simple there is one middle aged couple and one other lady. We sit down and I put Raegan on my lap facing me, trying to distract her, asking her if she’d like to sing a song and in a voice just loud enough for everyone she says:…

“CAN I TOUCH YOUR BOOBIES”?

Ok now that you have gathered yourself up off the floor from laughing… I quickly and sternly said ”Raegan we don’t say that” although I was not as loud as she was, so then she says:…

“CAN I TOUCH THE OTHER PEOPLE’S BOBBIES’?

At this point the couple who so politely stifled themselves the first time could not help themselves and busted out laughing. I wanted to DIE!!! Thank goodness they were all good sports, assured me it was ok and how “CUTE” she was Oh Yeah “cute” was the word I was searching for…

So the sleep deprivation they were looking for happened and worked. She had a seizure just as they called her name which I guess was “good” since there was a good chance they would catch activity once they had her hooked up. We met Susanne who was a middle aged woman who was VERY kind. Poor Raegan literally fell asleep in my hands as I held her head for the EEG leads to be placed. As I sat there I looked over at the “chamber” for lack of a better word that our machine was in. Not very big at all, that wasn’t really the issue though what was a bit alarming was that the door that they would close behind us was NO JOKE what looked to be 18 inches thick…creepy…once all the leads were on we laid her on the MEG scan bed and slid her head into the helmet that had the 274 sensors. They had me lay with her on the bed to calm her should she wake up and be frightened. The only other thing that was creep was when they did close the door it had a round handle that locked the door in place, like you would see on a bank safe. Then you lay realizing that this room all the way around has walls about two feet thick and you were just locked in by a bank safe door. Now the mind plays the “I’m in San Francisco” what if there’s an earthquake mind games…luckily for me I was just as sleep deprived as Raegan and fell asleep too. Almost two hours later they came in put some bubble probes on her fingers to test some sensory sections then we were done!

I have to say I am finding out new things about myself with each new chapter of this journey. Like this time I learned that I need SEVERAL hours to “decompress”. I came out of that room, head spinning and just feeling really overwhelmed. It just takes a a lot to process.

So where are we today? We have been doing two medicines and on Monday started the second med at a level the Dr Sullivan felt we would see seizure control. I was amazed as Monday night came and sure enough we had not seen a single episode, then again on Tuesday and Wednesday. I keep a daily log and a calendar in a binder and just this afternoon, Thursday, I happily journal and noted that with today we had gone FOUR days without a seizure!!! I have now decided that I will not out loud celebrate like that again since at dinner she had a seizure. Again words will never describe the feeling you have when you see “IT” when all you want is “IT” to be gone.

We will continue on but will ask for LOTS of prayers as the next medicine that we are to try has very serious and scary side effects. I know all meds do but this is our 3 yr old daughter. Blessings to all of you we love and cherish you so much!

You need to take a break...

This is something I hear often and from the bottom of my heart am so grateful to the friends that are trying to keep me grounded! But I do have to share this...

There is never a break. I wake up wondering how she slept, did she have them in her sleep,she wakes up I stand and stare at her waiting for it to happen, I feed breakfast and watch, EVERY.SINGLE.ACTION is watched. Watched not just casually but watched intently. I feel like I live my life with my head turned to the side just watching. If I'm not watching I am doing google search after google search to try and find blogs and stories of people who are walking the same Epilepsy road, chat rooms, medical reviews, facebook foundation pages, medication pages. Today I am just spent. Last night George and I got away for a couple of hours and today I was able to get away for a little shopping and lunch with a friend. I am blessed. But I had to apologize and confess to my friend that although I was "there" I wasn't "there". When does life go back to "normal" but what is "normal" and this path is long and not quick and easy. So many questions, so few answers. I want to say if I haven't put it out there before that I know that we are not the only family to walk this and in fact we are fortunate that her case is only what it is as it could be so much worse. Nonetheless, it is our path right now and this momma is tired...