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...

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!!!

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...