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 :)

How I feel...

Let me start by saying I must have the BEST family and friends. Poor George has watched me mope around the house for DAYS now. Today by far has been the worst. The bottom of the barrel, can't function, feel dead to emotion yet my mind can't stop turning. Honestly, I can only think of a couple of times that I have felt so desperate in my life. Maybe it's the waiting, maybe it's the unknown, maybe it's the fact that we have begun a medication that I want to see complete results in and not the 3 episodes a day we have seen since we have been home. Mind you that just because we are only 'seeing' 3 episodes it is an indication that there are more going on "behind the scenes". It must be working some though since I didn't see the arm/leg jerks and only the chin twitching however I counted 21 chin twitches in about 2 minutes time where as when it happened with the arm/leg we only saw as many as 11 in the same time frame. Too many details/technicalities? Eh, maybe but then again I sit here ALL DAY watching. I found myself yesterday NO JOKE I sat in one spot and stared at her face for an hour straight. I was so thankful she just sat quietly playing even during an episode.  I spent tonight researching, reading, combing through articles as to what our journey MAY entail...

So what does the picture represent? At first it was a picture of imprisonment. A picture of me held hostage in my own mind/body, desperately wanting to ripe open the chains of uncertainty that grip me knowing that I would never have the strength to break that chain if it was in the natural realm and I were faced with that. But the more I look at it I think I see opportunity. Huh, opportunity in chains. I actually see a crack in the doors that although I am not allowed access to the other side right now there is an opening that will reveal itself to me in due time. Maybe that's as information comes to me, maybe it's as I learn to rest in this journey, although that seems like the furthest possibility right now. Maybe it's just a quick revelation that He himself is saying "In MY time little girl". Whatever it is I am grateful that I came across the picture, that the picture graced the page of my dearest "sucky friend" half way around the world in Turkey and that although not intentional at the time God used her again to somehow speak into my soul and allow us to "be together" though the world has us separated. I hope that I will learn the word surrender and that I will live a life of graciousness during this trial of chains...

And here we are...

July 15, 2012 Sunday

So we have been home from the hospital for 4 days now. What happened during our stay?...We were transported via ambulance from the hospital to a facility in Sacramento. The reason? Well, apparently the hospital only had a "Level 1" type MRI machine but Dr. Asaikar was confident in what image he  needed speciffically and that MRI would not work we needed a "Level 2" so away we went. God's grace through this is amazing. We expected the MRI to last AT MOST an hour. So imagine my angst when we were approaching 1.5 hours. I guess JUST has they pulled her from out of the MRI he came in and asked to see the images. He found what he says he knew was there, a spot that even the radiology tech had not seen. So back into the MRI she went so that they could get more detailed specific images of that area. Back to the hospital we went. I am grateful to the two drivers we had that waited with me in the waiting room and the nurse that had to accompinan us on the trip not only did they take excellent care of my baby but they helped this momma not jump out of her skin!

Dr. Asaikar came in that evening and pulled us from the room to show us her images. (Another provision of God's grace is my sister happened to be there so she stayed in the room with Raegan). Let me tell you if you have never seen MRI images they are pretty narley at times. They were images of her head/brain sliced into 1/14 of a cm. I must say that even though I know what was likely coming because of previous conversations and thoughts nothing prepared me for the moment he stopped on "that image". The one where he says "She this here, it shouldn't look like that". Frontal Cortical Dysplasia I have heard this term used before and knew it's meaning just didn't want it attached to my daughter. 

Imagine if you will say an 8 layer cake cut in half with frosting in between each layer, this will be our brain...(so sorry I'm not scientific enough) ;)  Anyway, as our brain forms in utero it develops in layers that should be very nice and straight. This will ensure our electrical currents run nice and smooth and even. Well, with FCD it would be like 5 of those layers having a knife drawn through them causing the layers to combine and jumble. This bundle would now be your lesion.

So now we know the "culprit". What do we do with it? Medication is our first stop since we need to control the seizures as wait for our next step. She has begun a medication called Depakote. So far she has tolerated it fine with the only side effect I have seen is about 2 hrs after taking it she has an EXTREME burst of energy that is off the charts and lasts for about an hour. Has it controlled her seizures? Not quite. We have seen episodes every day since we have been home. Do you know how exhausting it is to WATCH someone. I mean literally spend your entire day looking for something/anything? Even the slightest tremble sends me in to stare down mode and then the counting begins. How many minutes does it last and how many twitches does she have.

The Dr has now referred us to a specialist at UCSF to begin the possible next step which would be removal of the lesion. Yeah I was TOTALLY NOT ready for the suggestion from him. A process that I'm not quite ready to deal with. So I wait for the call from Dr. Sullivan. Dr Asaikar personally talked to him Friday and now we wait...and as we know that is just a tad hard on my end.

If you made it through all that rambling, THANK YOU. I find the best therapy for me is talking or the next best thing blogging. I hope you can bear with me as we journey through this.

You want ME to wait...???

July 9,2012 Monday

 I said I didn't sleep much that night and could only count the seconds until the Dr's office opened at 9am. HOWEVER, for those that know me best waiting is not my strong suit...SOOOO I decided that I could not and would not be able to handle waiting if I called the office and they said "Oh we'll see you next week" so what does any good, OCD, can't wait around momma do??? I load up my baby and make the hour and 15 minute drive so that I could be in the office right at 9am. As I approached the counter I encounter a new employee who politely asks 'Can I help you?" I am caught off guard as a HUGE lump is caught in my throat, tears spring to my eyes and I tell her "We were here two weeks ago, my daughter had 6 seizure episodes yesterday and we HAVE TO see Dr Asaikar TODAY. She says he'll see us at 11:30 :)

Why is she shaking???

July 8, 2012 Sunday

I'm combing Raegan's hair in hopes of getting out the door on time for church. I'm spraying her hair with a water bottle. George says "Why is she shaking?" I don't know I reply not stopping what I'm doing. He says Look she can't hold her hands still. I stop and turn her to face and then I see it. Hair clip in her hands and her hands shake  ???  I look at her face and want to pass out. There.It.Is the 'chin jerk' there is no real good explanation for it but her chin dimples in a spot and a way that is not humanly possible to duplicate and happened before EVERY seizure with her Infantile Spasms. As SOON as her chin jerks her hands shake. I snatch her to my chest. This CAN NOT be happening! Six times that day I watch and video the same thing happening. There are no words to describe what we feel. I spend the rest of that night wide awake doing what I know I shouldn't but running every possible scenario through my head of what we will be told when I call the dr's office in the morning...

You're Outta Here!!!

July 29, 2012 Friday

Dr. Asaikar walks into the room. We are here for our typical 6 month follow up. We have now been seizure free since Sept 6, 2010 the last eeg documented seizure and October 2010 when we got the official All Clear! We have been coming every six months and will continue to do so, or so I thought. He walks in a has a huge smile, complimenting Raegan and says "Well, I'm done with you"! I was like WHAT?????? He goes on to say she is doing great just promise to drop me a post card once a year letting me know how she is doing. Then he begins the "technicalities": 40% of IS (Infantile Spasm) patients have a recurrence of seizures later that would then be classified as Epilepsy, 15% will be diagnosed with ADD/ADHD, 40% will have learning/processing disorders... I say "Well, I'm glad you brought that up. We have been noticing that she seems to be having a hard time processing instructions/things in some settings. Also, we had a weird experience two weeks ago and we don't know what it was." As I begin telling him about the "episode" Raegan had his face IMMEDIATELY falls and the questions begin "What was she doing" "How many times has this happened" "How long did it last" "What else is she doing" I then knew that he was "on the hunt". He says I am sorry but it sounds like absent seizures. I want to keep an eye on her, track any episodes and then we'll do an EEG. If you start to notice that you are tracking episodes everyday call the office and we'll get her in sooner. So off we went. My heart was heavy but I told myself it's nothing...

Filling in some blanks

October 2010 to March 2011
During this time we have lots of ups and downs. One hard one is the quarintine. Due to the ACTH we can not go out in public. The steroid completly wiped out her immune system. Trips to Dr. Asaikar included first appointments of the day, sitting the parking lot calling in to let them know we were there, and entering through the back door to minimize contact. A few visitors were allowed at home but be prepared to scrub down before touching her. During this time was when we found out the intial 'damage" done due to the seizures. Although by then she was 20 months she tested at 10 months and 11 months for expressive and receptive language. So speech therapy it was, once a week. The BEST date in all of this time frame though was March 18th. Not only because it was daddy's birthday but because this was the FIRST day since August 6, 2010 that she did not have to take seizure medicine. Happy Birthday, Daddy!!!

The days that changed our world

July 31, 2010 Saturday 
This is the day that Raegan had her first "episode". What the heck was that? She had just finished dinner and began shooting her arms forward and head almost hitting the tray in front of her. SILLY GIRL!!! I just thought she was playing. Told daddy about it later and we just thought no big deal and went to bed for the night.
August 1, 2010 Sunday
Our LAST Sunday morning together as a family of three! We were waking up to our LAST family breakfast as a family of three since Little Miss Carley would be making her scheduled appearance the next Friday the 6th. So here we sat the three of us in bed talking about how Raegan was going to be a BIG SISTER :) !!! All of the sudden it happened again, but this time we could see her face. Eyes jerk  back, arms jerk out. It looks like she got the startle of her life. We look at each other and say that's not right. Grab the phone, run to the car and call the dr on the way to the ER. Chest x-ray, CT scan, blood work and we are sent home everything is "clear". Everything but the "momma knot" in my stomach that tells me this is not right.
August 2, 2010 Monday
Get into the on call dr since ours is on vacation. He says it's a seizure and he would refer us out to Dr. Asaikar but that it would take days to even get a call back about the referral. Ummmmm....not to pressure anyone but I'm having a baby FRIDAY!!! I get home and call Dr. Asaikar's office myself just to "touch base". They say he is backed up because he just got back from Bombay. I explain what is going on and that I realize that they can't help me "right now" but I am scheduled to have a csection on Friday and I would like to get an idea so I can plan...she says "WELL....IF you can be here tomorrow at 1pm we will squeeze you in" I'LL TAKE IT!
August 3, 2010 Tuesday
We (Me, my big belly, Raegan, and Clara) walk into the room and exchange greetings with an older, distinguished man that has come HIGHLY recommended as he can be accredited with saving a family member. (more on that later) I show him the video of Raegan that I happened to catch the day before. He takes one look at it and says "That's an Infantile Spasm, let's pray to God I am wrong" You see time is CRUICAL when dealing with Infantile Spasms as they cause for lack of a better word Brain Damage with each "episode". Within 15minutes we are being admitted to Sutter Memorial. By 4pm that same day we are hooked up to our first EEG.
August 5, 2010
By this time we have had 72 hrs of EEG, an MRI and countless bloodwork. Our hearts sink as we are told that she indeed does have Infantile Spasms but at this time her MRI is clear. We are to begin medication ASAP by the name of Sabril. Oh but wait! It has only been approved in the US for 6 months at that point and you don't just go down to your neighboorhood pharmacy to get it, in fact our local pharmacy had to research what I was talking about...So at 11:30PM we crossed the threshold of our home, new diagnosis, in need of medication and just over 6 hours from gettting up to go the hospital to meet our newest family addition.
August 6, 2010
WELCOME CARLEY FAITH!!! We were so excited to meet our baby girl but also at the same time terrified because there were still so many questions. The biggest one being Where would we get our medicine? Well, I was in recovery after the csection and we get the call. We are now meeting a mom who is going to help us with medicine until ours comes in since we have to start this ASAP. And so the whirlwind would begin.
September 5, 2010
We find out the Sabril is not acting at 100% in controlling the seizures so back in the hospital we go. This time though it was with a 15 month old and a one month old. We looked like we were moving in! We were told that we would be beginning a series of steriod medication by the name of ACTH. The would involve shots in her thighs. We were at the hospital because you have to be monitored as you begin the shots since there is such a significant risk for high blood pressure as well as stool issues. We spent 3 days there and came home to a whole new routine. A shot in the thigh twice a day. BLAH! She only gained 4 lbs but it looked like 20 by the end of the series. Moon shaped face, HUGE pot belly. We were blessed though that we didn't have the irratibility like most people told us we would.
October 2010
We get the best news possible...ALL CLEAR!!! The shots had worked! We are told that her Infantile Spasms are gone and we will begin the weaning off process of the medication...