ONE more week....

Well, let the countdown begin…I mean we have been ‘counting down’ ever since they told us about the surgery, but at that time it seemed SO FAR off and we have been so desperate to see Raegan free from her seizures. Up until now we have been pretty cool, calm and collected about it and I guess true to my nature have just sailed along “taking care of business” as my dad would say.

Here I sit and it’s Sunday. One week from today I will fill my day with cleaning and organizing the house so that we can come home and relax and not having to worry. I will pack, repack, repack and repack our suitcases a million times as I obsess that I am going to forget something. I already have Carley DONE which is nice. We have to have some sort of family dinner so that my mom can come and spend some time with us but especially Raegan. (PLEASE keep my mom in your thoughts and prayers. She is trying to be really strong but this is SO hard for her and with her Parkinson’s I worry for her). I will deliver our luggage to our friends since we can’t fit us AND our suitcases in George’s little car. (HOW does he fit in it everyday???)

We have many ask what are plans are for the weeks we are gone. Our original plan was to have some very dedicated family and friends take care of Carley which we are so blessed by. It would have been wonderful for her to stay in her own home but it would have been hard as she would have seen us twice maybe three times which would be hard on all of us. It was very important to George though that Carley be a part of our family as much as possible during all of this. He will be taking the first week off to be with us at the hospital. So he has decided that he will be “Mr. Mom”. He and Carley are going to stay in San Francisco that first week. He is actually excited to spend that time with her and becoming better buddies! The next 10 days we have been blessed with an offer that humbled us with gratitude.  George showed up to work one day and out of the blue his co-worker approached him, told him that they have been following Raegan’s story and researching the surgery. They felt it was going to be so much and wanted to help. George was so overwhelmed when they offered to keep Carley while we were in the hospital. WHAT?!?! Let me tell you I don’t know what your faith or belief is but we truly believe from the depths of our souls that God does care about the details. We may not understand WHY we go through what we do, but He does care. So Carley is going to be with them those next 10 days. It is going to be great all the way around! 1) They only live 40 mins from the hospital and also offered George to stay with them so Carley will get to see him every day, 2) They have three boys-she is going to have so much fun making new friends 3) They are an AMAZING family that is just going to take care of her as part of their family. (They already have a princess toddler bed for her, I was going to send my pack and play. I was told no way she needs her own space) J  We are also, blessed that on the day of her two surgeries we have a couple that is coming down to sit with us. It will be nice to have them there but it's wonderful because they have told us over and over, they are more than happy to be there for us but that we are not to “entertain” them while there. If we want to talk great, if we want to walk great, if we want to be left alone, perfect. But they will be there to support however they can. For that I am grateful.

I have been blessed to have God take care of the details again. I have made my way to an online Epilepsy support group on Facebook. Each and everyone of us are walking in the same path in one way or another.  It was started out of Arizona but they have been graciously adding more of us from other places. These moms and dads know EXACTLY what you are feeling when you post “she had another seizure, or the meds are doing this” there are several that have had surgery and it is invaluable to have someone that has been there and done that.

We have been blessed with friends that are here for us no matter what. Daily we have people reach out and want to know how they can help. I have another group of online mom’s that has been a sounding board which helps so much and then there are the friends that get the daily calls to listen and support the ramblings of this journey, so glad they put up with me. The mom’s playgroup that we don’t get to see as often as we would like but that makes friendship invaluable. The freezer meals a dear friend just sent to us that will allow me not to have to worry about dinners this week. THANK YOU ALL!

So what can you do? It has been brought to my attention that people say “I want to call her but I don’t know what to say” or “I feel so bad I don’t want her to feel bad” Let me tell you right now. There is no right or wrong way. I mean really I’m the one that sometimes feels awkward because I’m not sure how to respond. I know thank you is the right response but sometimes there is that awkwardness and THAT’S OK! Every time someone posts something on my Facebook or on Raegan’s page or sends a message or calls IT MEANS SO MUCH I truly mean that. It means so much to George when someone on a job site asks. In fact he came home with tears in his eyes because a concrete driver that he had not seen in WEEKS jumped out of his truck when he saw George to ask how Raegan was. EVERY well wish and comment really does fill a little part of our souls that seems to be breaking at times.

HOW do you prepare for something like this? HOW do you find peace? HOW do you sleep? HOW do you function? Honestly on some days not so well, on others we do fine. This past week has been very very hard I would be lying if I told you otherwise. I try to hope that this next week will be filled with more peace than I can imagine. We go on Thursday for all of our pre op stuff. We meet with our Prepare Team that goes over all of the paperwork and medical, we’ll meet with Child Life who will be with us the mornings of the surgeries to help Raegan (and us) with the emotional process of preparing for surgery. They will also be the one’s that will visit her room to play games or bring goodies. We will then go for a pre op sedated MRI. UGH I HATE that part. I am grateful they are so careful to cover all the bases. However THIS TIME I will make sure to have a taco, nuggets, cheese sticks, apple or anything else to avoid the 45 minute scream fest that followed the last sedated MRI.

Ok so there it is. There’s my thoughts for now. Lots of rambling I know. THANK  YOU from the bottom of our hearts for everything everyone has done and for all of the support we will receive. We love you all and as always, BLESSINGS!

MERRY CHRISTMAS and HAPPY NEW YEAR!

What an amazing holiday season it has been! This year was the year that both girls were able to fully enjoy all of the festivities. From several holiday play dates to seeing Santa at the mall. We weren’t sure what to expect with Raegan’s seizures as we recently increased her medicines again. However, praise God that we made it through with no real issues! What a gift in itself! We celebrated with the whole family on Christmas Eve. I had to run out to check the mail several times since some of the gifts were coming but so sad they didn’t show. Oh well, just another reason to see everyone soon! As I was pulling back in the driveway though it was amazing how warm my heart was to see all of the kids vehicles. It meant my home was full with love and laughter. Let’s just say the girls’ had the whole shredding the paper down to a science! Christmas morning we woke to an empty plate where cookies had been left and a dry glass of milk. The tiny candy cane trail that lead from their room to two adorable dolls under the tree. The highlight of Christmas day was when we had dear friends over for a visit and we sat around the table with our birthday cupcakes and Raegan led us in a very loud rendition of Happy Birthday to Jesus. Music to our ears!

In just a few short days we will be entering into a brand new year. We are VERY happy to see some of the trials of 2012 behind us but I would be bold face lying if I said we were jubilant for the arrival of 2013. I shouldn’t say that necessarily, it’s just the fact that we are one month away from surgery. Both George and I looked at each other Christmas Eve night and talked about the reality of what we are about to walk through, together. Thank goodness that although we do not understand, God knows and he has the two of us together to walk this hand in hand. Our heart aches for the unknown of what Raegan will endure however I think that even though 2013 may start with a bump we are going to claim it to be a year of VICTORY! Victory over Epilepsy!

Our deepest gratitude to each and every person that is standing with us as we travel this road. Knowing that we have support in so many forms does bring us peace, comfort and strength. As always we pray for BLESSINGS to you all and may your NEW YEAR be full of hope, peace and LOVE.

Waiting...

So I must say over all in the big picture time is just FLYING by. As I posted before from onset in June, hospital in July and knowing about surgery in Oct we have had a little time to digest things. I guess sometimes I feel numb or matter of fact about the situation, maybe to protect myself from crumbling into a ball in the corner never to return. In my humanness I have been telling myself and others that I'm fine, that yes this sucks, but it is just something we are having to do. The truth? I am not fine. I am not ok. It is not just another day. We are 8 weeks out from surgery. Count that. EIGHT WEEKS. Do you realize how that is going to fly by? I mean we are only three weeks until Christmas Day, then one week to recoup from the chaos, and if you're like me I mentally take advantage of the week of New Year's to 'check out'. So after all of that it will give us three weeks to get all of our things in order for surgery. Heck until just this moment I forgot about our dogs...note to self...make sure someone takes care of the dogs while gone... How do you pack for 15 days in the hospital? I mean yeah I will probably be able to find a spot to wash clothes at least once or twice but that is still a lot of stuff to pack for that amount of time. Although my Christmas list is yoga pants, long sleeve t's, socks/slippers and pj's. It also amazes me how much George and I have brainstormed on how to work meals so we don't go broke eating in the cafeteris. One plus is with him only working 15 minutes from the hospital he is going to bring us fresh fruit and veggies daily from the awesome farmers market they have on campus. Ok enough rambling on that here's the REAL reason for this post...

Two days from now we are spending the day at USCF in San Franisco. We are to be there at 8am where Raegan is going to meet a Neurophyscologist for 6 hours of testing, by herself. I am yet to figure out HOW they are going to keep her occupied for 6 hours BUT since she is the DR. I am sure she knows what she is doing ;) The purpose of this testing is we are wanting to get a SOLID foundation of where Raegan is in her learning, development, speech, motor skills, cognitive learning. As you can imagine brain surgery IS a big deal and we need a good baseline to test against after surgery to see where she could possible have shortcomings and need additonal OT afterwards OR where she excels after surgery with the damaged tissue gone. We prefer the latter!!! :)

After her testing we will then meet with Dr. Auguste, her surgeon. Now this is the real reason for my anxiety. I feel like I have researched, read, talked, and listened to people until I just couldn't anymore but no matter what I have THOUGHT was going to happen this kind man will put it in concrete. We are going to hear IN DETAIL what he sees and how he is going to fix it AND his projected outcome. His projected outcome... I think that is where were are hung up. There is no black and white or gaurentees. We have watched videos of Dr. Auguste and from those he appears to be a very dedicated and gentle man. I have read articles he has written and have sighed with relief but we are going to get to hear and meet this man for ourselveds for the biggest event of our lifetimes. We are putting faith in this man to do brain surgery on our daughter. Well, that is not entirely true. We are trusting God. God has given this man the knowledge, skill and dedication. We are trusing that God will be in every moment of this as He has been up until now.

Please join us over this next couple of days as we go into what seems to be our next 'hurdle', if you will, taking us one step farther on this journey. We love you all and as always BLESSINGS!

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...