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.
