Hmmm...

Let the guessing games begin. Sophie has been off seizure medication for almost 5 months. So we let her seizures be what they were. She had her good days and bad but we never had to worry about whether to increase or decrease or who knows what to her medication. Like I said in a previous post, I took a hiatus from thinking. It has been almost 3 years since her first seizure and sometimes you just need to step back, live life and not be consumed by the "what ifs" and "what's next". But now I am back in the game. Counting seizures and documenting schedules. Which means I have to consciously try to keep a close on eye on her. Which is not that easy when you have a one year old to also look after. So I try my best.

Yesterday, we increased Banzel to 200mg (100mg in AM and 100mg in PM). Still a very low dose. We will stay at this dose for 3 days before we increase again. Which brings me to the guessing game this morning. Not a good morning. She woke up at 5am and had 16 seizures. She went back to sleep and then woke up around 7am and had another 15 seizures. I am sure it doesn't have anything to do with the medication but it makes you wonder. So now I just hope and pray that Banzel is the "IT" drug for Sophie. I will try and let the next few weeks be what they are and try not to wonder too much.

Banzel - Day 3...

It has been 3 days on Banzel at 100mg per day. We haven't seen any results but we weren't expecting to see any at such a low dose. Tomorrow we increase the dose to 100mg twice a day. The straw method of taking the medication is working...such a relief. It is so easy to get her to take her medicine. I am in LOVE with the straw method. I actually tried to get her to take her omegas that way but they were too big to fit in the straw. I can't believe I just found out about it. It would have made things much easier in the past.

I am so hopeful that Banzel will be the "it" drug for Sophie. I haven't been this hopeful in such a long time. It is scary having my hopes up so high at the moment. But at the same time I find myself having a renewed sense of peace. Peace that no matter what happens, Sophie is going to be okay. That she is happy. That is what matters the most. That her smiles consume her day. My day. Her smiles far outnumber her seizures. She is such a happy child. My favorite part of the day is right before bedtime for the girls. And not because it is "right before bedtime". The girls are in their PJs. Fresh out of the bath. Smelling all sweet. Teeth are brushed. They know it's bedtime but they get all giddy. There is this unspoken vibe between them. And they both start belly laughing. Sophie is doing circles around Elsa. Then she gets right into her face. Eye to eye. And they both just start laughing. Then Sophie runs off. Elsa can't take her eyes off of her. Then they start playing, more laughing and Sophie just being her goofy little self. I will have to get this on videotape and upload to the blog soon. It is just way too adorable.

Banzel (Rufinamide)...

Banzel is a new drug that just received FDA approval in November 2008 for Lennox-Gastaut Syndrome. So no one has much experience with the drug. Since my local neuro has not put anyone on this drug, he wanted me to asked Dr. Chugani about it.

So I e-mailed Dr. Chugani to get his thoughts on Banzel. This is what he had to say...

"That's a new drug that seems promising. It just came out. I have used it with good success in several children."

I spoke with another mom who put her son on it about a month ago and she loves the drug so far. She has seen no side effects from it. She has not seen a seizure in the last 15 days (the day after he started the full dose).

So we started Sophie on Banzel today**. We start off at 100mg per day and will gradually go up to 700mg per day, if need be. Banzel should be taken with food since it absorbs better. I waited until she got home from preschool and gave it to her with lunch so I would be able to monitor her for any allergic reactions. I made a glass of chocolate milk and let her take a drink through the straw. Then I stuck the tablet into the top part of the straw and she drank it right down. I can't believed it work. I have never thought about it before. Another mom mentioned the MediStraw on her blog but I forgot to order one so I tried with a regular straw. The tablet is perfect size to fit right into a straw without sliding to the bottom. It gets a little stuck so while she was taking a drink, I slightly squeezed the top of the straw and she drank the tablet down without noticing. I hope it is always this easy.


**I was going to start Saturday morning but for some odd reason she threw up. It was right before breakfast and afterwards she seemed perfectly fine. So I don't know if she just gagged on something. I was actually in the middle of cooking breakfast. After I cleaned her up, she kept looking at the food and saying "num-nums" so I let her eat. She ate a lot and has been perfectly fine ever since.

Happy 1st Birthday, Elsa...

We celebrated Elsa's 1st birthday last month. She turned a year old on January 22nd. What an amazing year it has been. She is my little superbaby. Full of energy and absorbing everything around her. She amazes me at the rate of which she learns things. And mostly from Sophie. And not always good.

She is practically running and is climbing all over the place. She climbs up in Sophie's chair and then she climbs up onto the kitchen table. She can climb up this slide (the actual slide...steps she has been doing for months now). There is nothing that will get in the way of that child getting what she wants. She HAS to imitate everything Sophie does. She is constantly following her around the house watching what Sophie does and then immediately repeats it. She has learned how to use sign language from watching Sophie. She says at least 20 words**. She throws full out temper tantrums (throwing body onto the floor, arching back, collapses into a wet noodle if you try to pick her up). She has practiced the art of defense to perfection (she knows when Sophie comes running to either duck into a squatting position with her head down or to lay flat on the ground and play dead). She loves to run around the house pretending to talk on the phone. Her new favorite phrase is "dab ba dab ba dab" which is something Sophie use to always say. She loves to load up as many dolls into her baby stroller and push them around the house. She also loves to feed them a bottle and put them night-night in which she lays them down and pats them on the back. She loves to go to the grocery store with me and charms the pants off of everyone. She is so tiny (at her one year checkup...she was 18 pounds 4 ounces and 29 inches long) that she looks so adorable walking up and down the aisles holding some sort of food item in each arm. She has incredible balance. She has great fine motor skills (stacking rings, nesting cups). She screams her head off whenever you change her diaper or try to put clothes on her. I mean "top of her lungs" screaming and twisting her body. But she doesn't say a peep when you are taking them off or if she is highly distracted by watching Barney. And when she is wearing clothes, she tugs at them and says "off". I am in trouble once she figures out how to take her clothes off. She loves turning the pages in her book. She understands almost everything I say to her and follows 2 step commands. If I tell her to go get a book so I can read it to her...she will walk to her book box in the other room, pick out a book and bring it to me. She does the hand motions to several songs (itsy bitsy spider, pat-a-cake). She identifies objects in the book. I can go on forever. Most of this is for me. For my records. Before I forget.

**She says dada, mama, done, down, uh (up), bar (Barney), baba (bottle), wawa (water), dog, nack (snack), moh (more), hi, bye, no, Elmo, doh (door), nigh-nigh (night-night), off, book, duck, nose, ball, num-num (something yummy to eat). She signs elephant, fish, pig, daddy, done, more, eat, blows kisses, waves hi and bye.

It is NOT just a petition...

You may have not connected with Gwendolyn and her family but they have deeply touched my heart with their story. The posting below is about more than just a petition. It is about the love a mother has for her child. The need to feel like she is doing everything possible to help her daughter and others fighting this disease and stopping anyone to ever have to live the same battle. Please take a moment...literally only moments....to, foremost, sign the petition but to also spread the word. To repost on your blog, to forward in an e-mail, anything to help. Because, for most people in the world, you cannot even imagine what it must feel like to hold your baby in your arms and be told there is nothing you can do to save your child's life.

Reposted from Gwendolyn Strong's blog page...


Just A Petition

I think, perhaps, I am obsessed. No, I know I am. Each day I check the petition, multiple times a day actually. I read the comments people write and the places they are from. I look for patterns to see what outreach efforts have worked. I think about how to reach more people, how to gain more support, what to try next...every single day.

Perhaps it seems futile, perhaps pathetic. But to be told, "There is nothing you can do. Go home and love your baby" -- well, that is impossible. We have no course of action, no next step, no treatment to put all of our efforts and energy into. The petition is our rounds one, two, and three. In a sense, the petition has become a 'treatment' because seeing it grow gives me hope, encouragement, and renewed vigor to keep pushing and fighting for our daughter, for others fighting with SMA, and for all of those taken much too early by this horrible disease. I know that to most people it is just a petition, a piece of paper. But not to me. It is all I have. It is my hope. My way of fighting this cruel disease. My way of doing something... anything... instead of just sitting there and waiting. I'm on the lookout for miracles, but none seem headed in our direction, so this is all I've got.

And so, when you pass out fliers... when you post on your blog... when you tell a friend... You are helping. When you offer to lend a hand and mean it... when you take action and really do instead of just talking about doing... You are helping. More than you know. You are helping one mother feel as if I am not alone, as if I have not given up. And I thank you for that, for giving me a little bit of hope...I need it to be a better mother to Gwendolyn.

http://www.petitiontocuresma.com/

Yummies...

I left a bowl of chicken and rice soup on the kitchen table that I was feeding Elsa. A few minutes later, I found Sophie sitting in the chair using a spoon to eat the soup all by herself!!! She is so not into using utensils. She was actually able to scoop up some soup** and make it into her mouth without spilling it everywhere!!! All this without being prompted. I am so proud of her.


**The soup was pretty thick because I added a lot of rice to help with Elsa's stomach issue. She has a stomach virus so I have been incorporating the BRAT diet.

Testing update...

So I talked with Ruth (Dr. Chugani's nurse that knows everything and anything about the surgery process) last Friday. The only test worth repeating right now is the 24 hour video monitoring EEG. Until the EEG shows a focus, none of the other test matter. Even though all the other tests show only left sided abnormalities, there is no way of knowing if that is truly where the seizures are originating until the EEG shows it. As all the other tests are just not enough evidence to go forward with surgery. So after Ruth discussed it with Dr. Chugani, they are okay with us having the EEG done locally so we do not have to travel out of town. I spoke with Sophie's local neurologist last night and he is going to set everything up. He also brought up trying Banzel (thank you Jen for mentioning that to me in one of your comments or else I would have been clueless). So we are now leaning towards starting Sophie on it. It is just a matter of whether we should start her on it now or after the EEG.

It's a BOY!!!

I am having a BOY!!! Brandon is ecstatic and Haley got her wish. According to Haley, everything would be okay as long as it was a boy. It would even things out. She would then have 2 sisters and 2 brothers (she has a brother on her mom side).

For me...it feels a little weird. To have to venture over to the boy section of clothing. The thought of diaper changes. The color blue. I went way overboard on pink. Everything is pink. Sippy cups, diaper bags, burp cloths, bibs...you name it and it is girly. I never thought I would have a boy.

Oh, and most importantly, everything looked great on the ultrasound.

Happy Valentine's Day...

Sophie had a Friendship Day party at her preschool on Thursday. It was so adorable. She was full of giggles as she couldn't figure out why Elsa was there. Elsa sat at the table waiting for her treat just like the rest of the big kids. Sophie kept looking over at her and laughing. It was so sweet.

Perspective...

I feel selfish...after reading this post on Zoey's blog and this post on Gwendolyn's blog. I was basing my decision on whether to do another round of testing for Sophie based upon my memories. These eyes that have forever been etched into my heart...

But these are not Sophie's memories. She most likely doesn't remember any of this.

Our kids are so strong and resilient. They are fighters. They don't dwell on the past. They look forward and do their best.

So, with all that said, we are going back to see Dr. Chugani to do another round of testing. I can't give up. I have to keep fighting on behalf of Sophie.

And if you haven't yet, please sign this petition.

What to do....

It's that time again. Time to think about whether we want to make another trip to repeat another round of testing with Dr. Chugani in Detroit. I hate thinking about it. But I have to. Especially since I haven't been thinking about things at all lately. I took a little hiatus from thinking. From our reality. Only problem is...Sophie's seizures haven't. They did once. For a month. But that was over a year ago.

So I e-mailed Dr. Chugani at 10:44am this morning...

...and he responded at 11:58am today.

Wow! Talk about a quick response.

He believes we should come up to repeat testing. The only problem is...I don't know if I really want to put Sophie through all that again. I have to believe that there is a chance that things have changed and she might be a surgical candidate. But I don't know if I believe that. Not even a tiny bit. But what else do I do? I am out of ideas. Sophie's local neuro is out of ideas. Dr. Chugani is out of ideas (as to trying another treatment option besides surgery). She still remains med free except for the neurontin at night. Her seizures still remain around 40 a day. Her development seems to have slowed.

I am so torn.

California or bust...

This post is long overdue. We went to San Diego at the end of November to visit my sister and her family. Though, I couldn't resist posting these adorable pictures of the kids. Oh, how we miss San Diego so very much!!!!! We had an absolutely wonderful time.

Sophie had fun playing in the sand. Elsa rode her first roller coaster and loved it. We all got to spend a lot time outside. Sophie was suppose to go back to school the day after we got home but it was cancelled due to bad weather...it took quite a few weeks for me to convince Sophie she couldn't just walk outside to beautiful weather.

Sophie and Elsa both loved the stroller walks up to Colin and Nicholas' school. Though, Colin and Nicholas got a little tired of having to walk home (it's right about a mile from their house) so we came up with some interesting ways to fit all 4 kids in 2 strollers.

We went to Sea World, Lego Land and made quite a few trips to the beach. The sand was great for Sophie's sensory issues. Though you wouldn't think she had any once you look at the picture below. But on our last vacation to the beach she cried as soon as her feet touched the sand. I guess she has somehow worked that one out in the endless hours of therapy she has had since then. She still has issues with snow but it is starting to get better.

Unfortunately, Haley wasn't able to go with us. We went for 18 days and just could not take her out of school that long.

Sophie and Elsa on the playground at the beach.

Cute picture of Elsa in her favorite stroller.

Aunt Erin and Elsa on the teacup ride at Sea World.
She practically leaped out of Erin's arms trying to get on the ride when she saw the other kids getting on.
So even though Erin was starting to get a little nauseous from the other spinning rides, she couldn't let her down.


Colin and Nicholas at the beach.

Sophie having a blast playing in the sand.

Daddy and Sophie playing in the water. It was too cold to go swimming.
But if it was up to Sophie, she would have dove straight in.

Aunt Erin and Elsa on the beach. She loved the water almost as much as Sophie.

Elsa playing in the giant rocks.

Sophie, Daddy, Elsa and Me at the beach.

Uncle Joe, Elsa, Sophie and Daddy at the beach.

Neurontin update...

Neurontin has been a roller coaster for us. Sophie slept through the night the first 4 nights in a row. Then she woke up once the following 3 nights. But when she did wake up, it was only for a few minutes. She would just sit straight up in bed, sit there for a minute, and then fall right back to sleep. Ever since then, she will sleep through the night every other night. The nights that she does wake up, she has been up longer. Though, it is still better than before we started Neurontin.

We are only on the lowest dose (3ml right before bedtime). But with every drug there are side effects. Sophie's seizures seem to be worse during the day. They are harder and last longer. So I am very weary about increasing the dosage. Uggg...nothing can ever be simple. Always trade offs. A lot to weigh on my mind. At least, she is not waking up in the middle of the night with her screaming seizures. I shouldn't say "at least". That is huge. So HUGE!!! That broke my heart more than anything. So, I guess I just rationalized it. The trade off is in our favor this time. Now I will just need to rationalize whether it might be worth it to increase Neurontin. For now, we will just give it some time. Maybe add another AED (anti-epileptic drug) during the day to see if it helps her daytime seizures. Maybe Lamictal. Who knows.

Sad transition...

Since Sophie turned 3 years old in October, she had to transition out of the Missouri First Steps program and into the Early Childhood Special Eduction program. So we had to say goodbye to all of her therapist. It was a very sad week. She had 5 therapist so we scheduled it to where we only had to say goodbye to one every day the week before she turned 3. We miss them dearly. These people were such an important part of our lives for so long. Sophie started receiving therapy when she was only 9 months old. I know Sophie would not be where she is at today if it wasn't for each and every one of them. There is no way I could ever thank these people enough. They will always hold a special place in my heart. It takes an amazing person to be a therapist to a special needs child. So here they are...

Karen, Physical Therapist

Jen, Behavioral Therapist

Staci, Developmental Therapist

Erin, Speech Therapist

Olivia, Occupational Therapist (not pictured)

Sweet dreams...

We started Sophie on Neurontin two nights ago. Even though Neurontin is a seizure medication, we are using it for a sleeping aid. Melatonin did nothing for her...probably because her issue was never falling asleep but staying asleep. She has slept through the night on both nights. Though, she immediately threw up after taking last night's dose. We finally found a medication that Sophie cannot tolerate. It is liquid form and I guess it taste terrible even though it is suppose to have a strawberry flavor. I cannot bring myself to taste it but if Sophie thinks it is bad then it is HORRIBLE. Maybe if we mix it in with some yummy drink, she will tolerate it better. Time to start experimenting.

Where have I been???

Tired. Exhausted. Overwhelmed. Nauseous. PREGNANT!!! Yes. Pregnant!

I am 13 weeks pregnant and just starting to feel better.

I have so much to catch up on. Lots of pictures to download.

Sophie remains off all seizure medications. Her seizures remain relatively stable with one cluster in the middle of the night, a big cluster when she wakes up in the morning, a smaller cluster after her nap, and sporadic seizures throughout the day. She steadily continues to develop...picking up words here and there. She loves the word "doh" (door). She says it all day long. Mostly because she wants me to open the door to either play outside or downstairs.

Sophie turned 3 in October and started preschool at our local elementary school. She is in an integrated classroom where she receives all her therapy. She goes 3 hours every morning Monday through Thursday.

We had a nice long vacation (17 days) visiting my sister and her family in San Diego.

Elsa is doing absolutely incredible. She is signing, talking, walking (trying to run), and climbing. She amazes me at the speed she learns things. She loves to follow Sophie around everywhere and tries to imitate the things she does. The cutest thing is when Sophie grabs Elsa's hands and makes her do sign language (usually the sign for "more"). They are starting to play really well together.

Haley is doing very well in school with one semester of 6th grade over with. She keeps busy with her extra-curricular activities...competitive dance and honor choir. Two things I always wished I could do but never could. I have proved that time and time again in playing Dance Dance Revolution and American Idol on the Wii...it is quite embarrassing.

We had a wonderful holiday season and feel blessed with being able to spend it with all our family coming into town from all over the place. Happy belated holiday to all of you!!!

Surgery decision...

It is with a heavy heart that I write this...Sophie is not a surgical candidate at this time. I received a message on my answering machine in the 15 minutes I was gone to drop Sophie off at school this morning. I called Brandon on 3-way and then returned the phone call.

The conversation started off good. Ruth (she coordinates every aspect of the surgery and even attends the conferences) said that they all loved the video I sent...especially the part where Sophie was making the tick-tock noise for the clock flashcard. She said they all thought she was just an adorable little girl and was very impressed with her development.

Then she dropped the bad news.

She said that there were about 25 doctors that attended and they had a very long discussion regarding Sophie. They pulled the actual EEG recording and tried to pinpoint exactly where the seizures were originating. The PET scan and MRI were just not enough evidence. The bilateral seizures originating on the EEG was too overwhelming. The video I sent, which I originally thought was going to make her case stronger, had the opposite effect. They were so impressed with her development that they did not want to do anything at this time to have a negative impact on that. Since Sophie appears to show absolutely no preference on using her left or right side of the body, it is quite possible that she is using both her left and right side of the brain...so they do not want to interfere with that.

They want us to come back in six months to do more testing...another 24 hour video EEG, another FDG PET scan and a FMZ PET scan. They say it is quite possible her seizures will lateralize (meaning that the seizures will originate from only one side of the brain). I am suppose to keep them updated once a month as to Sophie's seizure status along with her development. I am also suppose to make note if I start seeing her have one-sided seizures and if she starts preferring one side of her body over the other. In the meantime, I am also going to get her a neuropsych evaluation to help determine if she does have a left or right side preference.

I had come to terms with surgery. I truly believed that this was it. That this was the end to Sophie's persistent daily seizures. That she wasn't going to wake up in the middle of the night anymore...screaming and upset because of the seizures. That we were going to see leaps and bounds in her development. That she could quite possibly be...a typical little girl. I dare dreamed of a life without numerous doctor visits, numerous tests, numerous medications, numerous seizures, numerous tears that roll down her face that is not due to typical reasons a little girl might cry. I know this is all still quite a possibility. But I also know that this might not be the path that God has laid out before her and that I must accept that...as hard as that may be. That He may have other...greater...things planned for her. But for now...my heart is broken. But I will put it back together and move on with the wonderful life that I do have. I am so thankful and grateful for the happiness in my life. Sophie is truly happy. She is a wonderful, beautiful, precious little girl who continues to amaze me.

Best of Sophie

Here is the unedited edited version* of the video I sent to Dr. Chugani for him to present during the surgical conference.

Sophie will be one of five cases that will be discussed during the surgical conference on Monday. There are anywhere from fifteen to twenty doctors that will be present during the conference. Including Dr. Chugani, Dr. Asano (pediatric neurologist who would be performing the grid surgery), Dr. Sood (neurosurgeon who would be performing the resection) along with several other neurologist, fellows, and researchers. All of the testing performed (PET scans, MRIs and EEGs) will be presented and reviewed by the doctors for them to come up with their own recommendation. A letter will then be typed stating everything that was discussed, any further testing that needs to be done and what the consensus was. I will then receive a phone call no later than Wednesday evening with the results.

In the meantime, I am literally sick to my stomach thinking about it. There are so many moments in the day where I just want to throw up. I am so afraid. Not of the surgery but what the consensus will be. I think this surgery will be a miracle for Sophie. I never thought it would come to this. The first round of ACTH was suppose to be our miracle. But it wasn't and here we are. Praying to God that surgery is the path that lies before Sophie....that surgery will be her miracle.

I hope you enjoy the video. You will witness first hand how happy and how far Sophie has come. It is truly amazing that she has been able to do all that she has done despite having so many seizures a day.

* The actual one I sent Dr. Chugani was only 2 minutes long compared to this one that is almost 4 minutes long.

Downloading video...

I need to put together a 30 to 60 second clip of Sophie at her best to send to Dr. Chugani. What software do you use to download the video to your computer? Also, what software do you use to burn the clip to a DVD? Or is it possible to send as an attachment on an e-mail?

Please leave me a comment if you have any knowledge on how to do this.

AMT PET scan results...

I e-mailed Dr. Chugani with the following:

...I was wondering if you had a chance to review the AMT PET results.


He responded with the following:

...Yes, the scan did not show any areas of increased uptake, and was therefore not helpful. It happens, HC


Don't ask me what this means. I'm confused. Does this mean it was completely normal or just no abnormalities in any new areas??? I e-mailed him back so we will see. Nonetheless, my heart is still pounding. When I saw his e-mail pop up, I was almost too scared to open it. Either way, I think this is good news. Actually, I know it is good news. But I still would like to know what it means.