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...

San Francisco Trip #1...

So it has been 4 days since we met with Dr. Sullivan. I am so pleased to say that we really liked him. I was not sure what to expect but thought it would be a little more clinical or stark. We were promptly taken back to have Raegan's vitals done and then what I assumed would be the wait for the Dr. I was wrong and pleasantly surprised when the Dr. himself came to get us for the appointment. Very warm joyful smile with his attention focused only on us. We were able to spend about an hour and a half with him. Very thorough, very detailed. Raegan of course was in RARE form so I  am SO THANKFUL that my sister was able to make the trip and was a great distraction even if with it taking at least four trips out of the room to go for a walk.

Let me say THANK YOU for all of the prayers, kind words and support. This has been quite the journey thus far. SO what did Dr Sullivan think? 

• He agrees with Dr Asaikar's findings. He saw the area of concern and we found out that her first MRI done at 14mons had a "suspicious" area that we can now see is the same area that has been localized. Her brain was just "too immature" to show the FCD back then.
• Her EEG shows ALL of her spikes on the left as well as her spasms. He says this is a good thing and that it was they had hoped for

So where to from here?

• Her medicine. We have now added a second medicine since her first one is considered a fail. Our hopes would be that one or a combination of medicines would stop the seizures
• MEG scan. This scan will be used to measure exactly where her motor functions, speech, vision and everything come from. The hopes will be that none of it come from or too close to the area where the FCD is at

Why would anyone be considered for surgery?

• So many questions. We asked if there was a chance that she could stay on meds and eventually be "healed or outgrow" the seizures. Here is his response:

It is possible that IF medication were to control her seizures she could one day go off meds.  I would say if we were able to get sustained control for a 2 year period AND her EEG was normal, then the probability of coming off meds may be around 10-20% (there actually isn’t very good data about this).  So since there are a lot of things that would need to happen clinically and with her EEG even to get to this relatively low probability, this is why we are considering surgery as an option.

• 10-20% chance that we could achieve the seizure free mark and a clean EEG. We also have to keep in mind all of the side effects that go hand and hand with all of the medicine and weigh the effect of not only her physical body but behaviorally and socially.
• He says that they advise that without all the further testing that surgery success of being seizure free is about 50%

As you can imagine it has been long this week. We just have not been able to truly grasp all of the info. What makes this journey even harder is that after adding the new medicine Monday night and going seizure free for FOUR days we were thrilled that maybe this combo would work. I am so saddened to say that last night I saw the first of two episodes. The first was ONLY TWO chin twitches so I was SURE that it wasn't THAT but just before bed out of the corner of my eye I saw the arm jerk and turned to see the chin twitches this time over the course of a couple of minutes. I.HATE.THIS

Please continue to pray, all our love and blessings to you!

How did you sleep last night???

Here is a question I get asked by George everyday. Usually he gets the same answer "Fine, you"? I have to say today's answer will be a little different. You see when I was waking up yesterday morning I witnessed Raegan having a seizure in her sleep. Just a bit alarming but I managed to keep my cool and run for the video camera since it is the best tool at home to help the neuro besides notes. Dash to the kitchen where it's charging and BAM! I remember that even though I had the thought to put a new disk in I didn't so now it's too late since it takes forever to format a new one. UGH! So what does that mean for me?...

I sat in my "tea" chair with my laptop until 11:30pm scouring epilepsy.com and circleofmoms.com and the epileptic board I am on there. I sat, scrolled and watched Raegan sleep on the couch. I had two hours previous to this set up my tripod with the video camera (new disk ready to go). But as time went on I was really getting tired but I couldn't sleep sitting up, not enough room on the couch to share, can't sleep on the floor can't see her directly, recliner on the wrong side too heavy to move and didn't want to move her so now what? AHA! (These are the times that I am thankful my daddy taught me to look outside the box) I took my 'tea' chair pushed the end of the coffee table up to it and now had a half soft furniture, half wood "lounge chair" but last time I checked sleeping on wood was not too comfortable, then I remembered the small fouton couch in the playroom. Let's just say it fit perfect over my concoction and I now had a bed...

Off to dream land one would hope but when you are "waiting" for something to happen you don't really sleep. I dozed here and there but every little rustle and deep breath had me lurching to sit to see if 'this was it'. It wasn't. Before I knew it it was 3:30am and George was up for work so I listen for the shower to go off so I can make his lunch. Get him out the door, lay back down and doze a bit. At I SWEAR 5:55am I laid and prayed "Lord Jesus PLEASE let Carley sleep in the morning. If she wakes up early it will be hard since we are in her morning space and it will be hard to keep her from waking Raegan. PLEASE let her sleep in, Amen" 6:00am I feel Carley's little hands at my shoulder. Stealth little girl got out of her room and I never heard her! So now I'm up but I put her back in her crib in hopes of buying some more time. Glad I did. Returning to the living room, there she is. Raegan looking so very sweet but at the same time there IT is. The tell tale signs. Lips twitching, shoulder then arm, slight rocking. QUICK hit record.

This by far is not a journey any parent ever thinks they will be on. As I type though it dawns on me that even though I was a bit irritated at God with a snide "Thanks for letting Carley sleep in" it is unfolding that had she not woken me up and that whole scenario I would have missed what I had stayed up all night for. Thank you Jesus for the little details!

Now I think I just may have to have some coffee it's gonna be a long day! Blessings to you all1

Please be patient...while I ramble

So it has been a few days since I have done a post. Thursday and Friday left me by the phone again with no call to get an actual appointment on the calendar even though Dr. Sullivan said he would see us the last week of July. So I guess that means I hit the phone lines again Monday morning.

I have been told that for those that are reading the blog it helps to know "where I am". Let me just say...somewhere down in a hole. At least that's what it feels like at times right now. I just can't really put it all in words. I feel like we are living life second to second waiting for "the other shoe to drop" for lack of a better expression. Constantly watching to see if Raegan will have another episode. We were so excited that she went two days without anything that we could see. That is until last night, when George was in the playroom with the girls and I heard Aaaannnneeettteee.....there is just a different tone now when we call one another to be witness to an episode. It sucks, frankly. Tonight was no different. We were in our room. George on the bed with Carley, my back to Raegan at the computer and then I "felt" it. I turned around and there she was, blank sad face, standing still, eyes darted to the side just for a moment, and then....the chin. UGH! So then the counting begins, watch the clock, are her limbs twitching or just the chin? This time she only wanted to crawl in my lap and sit. I suspect she was "feeling" it more since she kept saying she needed to go to the hos-a-bill (she sounds too cute), I told her she didn't need to go to the hos-a-bill but she just needed to let momma hold her. The chins only lasted about three minutes but it took just over 15 before she would "snap" out of it and laugh at daddy which is how we tend to gauge where she is. Then she was off and running, playing with Carley all the while George and I just look at each other and try to guess what now.

People are always saying what do you need or just let me know. I can say it is the random calls to say "Hey I'm thinking about you" or the random card in the mail or the facebook message on my wall. Better yet the unspoken prayer for us when we come to mind. I know we still have a journey ahead of us but I for one am SO grateful for the family and friends that are standing with us through this.

Blessings to you all!!!

Meet Dr. Sullivan...

So I went to bed late and got up early. Story of how it goes around here. Anyway, I was reading through paperwork/dictation I received yesterday to send on to Dr. Sullivan at UCSF. Let's just say "Praise the Lord" that He has given man knowledge to understand "Dr speak"! My head is swimming. Anyway, I did have a chance to talk to Dr. Sullivan a few days ago who assured me that he would love to see Raegan. Now mind you I am just a bit overwhelmed with this whole process and I like to have as much info upfront as possible. In speaking with him he was very apologetic that he could not see me until the last week of July since he is the camp Dr for an epileptic camp all next week. So this morning as I was searching him online I came across his profile picture and had the sudden urge to pray for him. SO, I decided that with google image you can find a whole lot of stuff. While looking up his picture I saw this one and followed the link. What a wonderful testament to working "outside" of yourself. So far he seems like a very kind person. I pray God's wisdom as he receives all of Raegan's records and that His will will been done throughout this process. So if Raegan comes to mind please also pray for Dr. Sullivan. Thanks in advance!

Here is the article that was with the picture from 2010:

Dr. Joseph Sullivan, a Mill Valley resident and director of the UCSF Pediatric Epilepsy Center, was honored in San Francisco last week for his work with epileptic children.

The Epilepsy Foundation of Northern California named Sullivan the 2010 Volunteer of the Year at the organization’s annual Candlelight Gala on Nov. 12.

In addition to his work as director of the UCSF center, Sullivan has volunteered for the past three years as an attending physician at Camp Coelho, a weeklong adventure in Yosemite for epileptic children ages 9-15. At Camp Coelho, kids with epilepsy are given a space where they can leave the stigma behind and enjoy the outdoors together.

Let's go to the carnival, free rides!!!...

HAHAHAHAAAA.....I am SO thankful on days like today that I can literally laugh out loud at my self! It actually has not been a bad day but a day of COMICAL phone calls. You see I have finally heard from UCSF and we will go there the last week of July. A little longer out than I would like but hey now I have PLENTY of time to gather the info I need to send to the dr. right???   HAAAAAAHAHAHHAAHAAA well let's just say "Thank the Lord that I have "2ish weeks to do it in."  

Here is the conversation I have had six times now:

"Hi this is Annette Rockenstein, my daughter was just a patient/had tests and I need to get a copy of her records sent to BLAH BLAH BLAH..." Would ANYONE LOVE to guess what I was then told EACH time???? "Oh I'm sorry you'll need to call so and so in such and such department...." Sooooo, the last conversation I had I was directed back to Dr Asaikar's office. I dutifully called and talked to Eric (Dr Asaikar's assistant, whom I LOVE), when he answered I said "Hi, Erik! Would you like to join me on this carnival ride of call so and so?" He laughed and I explained what I needed. He chuckled and GUESS WHAT HE SAID??? "Oh you'll have to call...."

SO, this is the time that I laugh out loud, count my blessings and thank the Lord that at this very moment I am able to find humor in the situation because previous experience tells me that I would have blown up and not been nice. (Previous experience also tells me that that does not work well). For now though I am off to watch Tangled with the girls, make dinner and when I drive to Sacramento tomorrow to pick up one set of records from Emily and then Erik I can then hopefully drive to see so and so in such and such department, meet them eyeball to eyeball and get the rest of the records on their way :)