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...

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!!!