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!