Happy 2nd Birthday...

To my messy,

Rock star,

Sweet,

Silly,

Smart,

Loving,

Funny,

Birthday Girl, Elsa.

From the very beginning, she was always on the go. Learning at a pace that has always amazed me. She has a heart that is full of love and forgiveness. She is passionate and strong-willed. She is my helper, my snuggler, my milk addict. I love her with all of my heart.

She is so incredibly smart. She can already recite her ABCs and count to 15. She can sing the words to entire songs and has the words to certain books memorized. She knows all her colors and shapes. She can put on her own clothes, socks and shoes...the right way (she knows the tag goes in back and which shoe goes on what foot).

She is my mischievous, sly and agile girl. She loves to climb up on everything so much that I had to put safety locks on my kitchen cabinets above my counters. She gets a certain twinkle in her eye when she is about to do something wrong and loves to push the limits.

She has a bond with Sophie that is so heart-warmingly strong. She forgives Sophie quickly through all her stages of aggression. At times, they have huge belly-laughing fun moments. At other times, they cuddle up and sleep next to each other. At other times, they are beating each other up (even though Sophie is twice her size, she can hold her own).

From the moment she wakes up in the morning, she has to account for everyone in the family (Daddy work, Charlie sleeping, Sophie at school). When it is just the two of us hanging out during the day, she is the first to hear Charlie's cry when he wakes up from a nap and insists that I go get him right away. She loves to feed him his bottle and always makes sure he has a bib.

She is mostly potty-trained and INSISTS on running around naked all day long. She has a love-hate relationship with clothes. She loves to pick out what to wear but hates to wear them unless I threaten to leave her at home unless she gets dressed.

Her sippy cup of milk is her lovey. She screams for it whenever she is tired or hurt. If I let her, she could probably drink a gallon of whole milk a day. And yet, she remains my little peanut. She is so tiny that she makes Charlie look big.

She loves to help me with everything and always has to know what I am doing every second of the day. She is practically glued to me at times. I love taking her out and about with me. She makes running on errands fun. She has such a huge personality on her.

She has somehow inherited my slight OCD behavior. If she gets a drop of liquid on her clothes, they must come off immediately (maybe just another ploy to get naked) no matter where we are. She is very particular about certain things and notices the tiniest details. Like a little paper tag hanging off the edge of her new Memory game card MUST come off.

She LOVES her baby dolls and does everything with them. It is fun watching the way she interacts with them. She is so gentle and caring and loving.

She goes to preschool two mornings a week and her teachers refer to her as the other teacher. She is always concerned that everyone is taken care of and loves to clean up the toys.

Happy 2nd Birthday my dear sweet Elsa. I hope you have a wonderful day.

Post-op Detroit visit...

Note: We arrived in Detroit on Monday, November 16th.

We met with Dr. Sood on Monday. He felt around on Sophie's head and said it all looked great. The gaps that we feel are normal. I guess the bone is suppose to grow back over time. He commented on how well she seems to be doing developmentally. And in less than 5 minutes we were out the door. Never to see him again. Hopefully. But I couldn't help but feel connected to this man. The man that removed a majority of my daughter's left hemisphere. The man that held her brain in his hands. But, alas, this is his job. Not his life. And on our way we went.

I wish Tuesday could have gone as smoothly. Getting her sedated for her MRI was quite the ordeal. They stuck her twice and missed. Shot Versed up her nose which made her gag. Then stuck her two more times and missed. Took her up to pre-op area (same place she was before her brain surgery...that was emotional in itself) and then gassed her up. And finally put an IV in her wrist that worked. Needless to say, she was upset when she woke up. But she forgave us quickly and had fun getting pampered back in our hotel room.

Then was the highly anticipated appointment with Dr. Chugani on Wednesday. It was jam packed in the waiting room. Our appointment wasn't suppose to be until later that day but we (along with many others) were bumped up because he was leaving to go out of town. In the first 10 seconds of the appointment, his comment was... "Is she always this hyper?". He suggested giving it some time but thought she would ultimately have to be put on risperdal or adderall. But, overall, he was impressed with her development. He didn't have the results for the MRI because it is going to take some time to analyze. We are going to leave her medications as is for now. She is suppose to have a repeat 1 hour EEG in 6 months. But I don't think I can do that to her. There is no reason to unless we are going to try to wean a med.

Then I asked Dr. Chugani a question that is better left unanswered. Because nobody knows the answer*. They are just guesses. But I couldn't help but ask. Whether from his own past experiences, if he felt that Sophie would ever be able to live a somewhat normal life. His answer... "Independently? I don't know. But I definitely think she will be able to live in a group home."

And that got me all worked up inside. I couldn't let it go. I was crushed. And it took me months to pick up the pieces. But I did. I have moved on. And my hopes are growing once again. Because Sophie is a fighter. And I believe in her. And with every crazy twist and turn this journey has taken us on, it only gets better. And I have to believe in the moment. Especially, when I think about the past.

Because if someone told me on May 10, 2006 (the day Sophie was diagnosed with Infantile Spasms) that Sophie would someday have almost half of her brain removed and that she would be better off because of it. I would not have believed them. But it happened....on May 30, 2009. And I saw it on her most recent MRI with my own eyes. It was quite eerie. Looking at almost half of her brain missing on the MRI and then looking at her. Standing before me better than she was before. How is that possible? She is missing almost half of her BRAIN. Her BRAIN. It is hard for me to come to grips with that at times.

Okay, that was a summary of the medical portion of our trip. Now for the fun stuff...

In order to keep Sophie distracted while she couldn't eat anything after 10am on Tuesday, we took her to the Warren Community Center pool that has a huge indoor play structure and lazy river. It was only about 20 minutes away. We all had so much fun but we miscalculated how long we could actually keep her entertained in the pool. Actually, it was Brandon and me that were exhausted. I think Sophie could have kept going.

So around 1pm we got out of the pool, showered and got dress. Also, in the Center was a library. So we found some of her favorite books to read to pass some more time. Finally, we headed to the hospital.

We stayed at a casino hotel that was only a couple miles away from the hospital. Sophie had fun eating room service, taking hot showers and getting ice from the ice machine. Besides the sedation, she had a blast. She amazes me with her resilience. I only wish I could bounce back as quickly as she does. One day at a time...right? I try.

* Because there is a part of me that does believe...the part of me that wishes my faith was stronger... I feel compelled to say...He knows.

I'm back...

It's 9:43am on Monday morning. I have exactly 1 hour and 42 minutes of freedom.

I'm sitting at Starbucks, enjoying a latte*, and kid-free! Sophie and Elsa are at preschool and my mom is watching Charlie. I decided updating my blog was more important than buying groceries**.

Monday mornings is "me" time. The only time in the entire week where I can sneak off without an agenda in mind. I'm not allowed to come home until after I pick up Elsa. So I do whatever my heart desires. And today it is this very much neglected blog.

Sorry for taking so long to update. It has been chaotic. Especially with Sophie and Elsa off for winter break. I have been overwhelmed. Things are starting to return to my new normal.

My new normal. That is what has thrown me off these last 7 months. My world has been rocked. I had a very hard time readjusting to my new life. Although it is a better life, change is hard for me. Sophie is a COMPLETELY different person. Of course, I don't miss the seizures. But, at times, I miss my old Sophie. The one that I grew to love and cherish for a little over 3 1/2 years. But I have the new and improved Sophie. The one that remains seizure-free. The one that is TALKING. Actually talking. Not just labeling objects or people. But actually using words without being prompted. All kinds of words. Hundreds and hundreds of words. On a daily basis, I am amazed at the new words I hear that I have no idea how she has learned them. On top of all of that, she is consistently stringing three words together. Like "open the door" or "more snack please".

Then there was the birth of Charlie exactly one month on the day of coming home from the hospital with Sophie. No further explanation needed on how that changes the family dynamics.

So, I'm back. Ready to do a lot of updating. Starting with our last visit to Detroit. It has been a very emotional time. I will try to take you through it all. But I am in a good place right now. Meaning "right now". As I try to take each day as it comes. And the scale has finally tipped in my favor...it seems my good moments in a day are outweighing the exhausted, frustrated moments.

* I am "enjoying" a non-fat, no whip, mocha latte...trying to lose that baby weight. And, yes, I realize drinking a latte, no matter how you make it, isn't part of a diet plan. But I have to cut corners somewhere.

** Going to the grocery store is kind of a joke. Thanks to my INCREDIBLE mother-in-law. More on that later.

We're home.

And all I have the energy to say right now is...

Can it really be this exhausting??? I am emotionally and physically drained.

A little bit of this...

And a little bit of that.

Just to warn you...this post is going to be random.

Tomorrow morning we leave for Detroit for Sophie's post-op follow-up appointments. We meet with Dr. Sood (neurosurgeon) on Monday. MRI on Tuesday. And we meet with Dr. Chugani on Wednesday. This is a good visit. A fun visit. We get to tell everyone how WONDERFUL Sophie is doing. That she remains SEIZURE FREE!!! That we had a great weekend. That the behavioral issues seem to be getting better. A LOT BETTER. That Brandon and I compared Sophie to developmental charts and believe she has gained an ENTIRE YEAR in the last 5 1/2 months since surgery. We get to say thank you for NOT taking the easy route. Because Sophie's case was a risk. A risk that a lot of neuros would not take. But my words will fail to truly express my gratitude. But I think they will know. Just by spending a few moments with Sophie.


So...YES...the behavioral issues are subsiding. We (me, Brandon, Debbie, the entire staff that works with Sophie at school) have worked hard to find some sort of method to try to get her to understand the consequences to her action. I think she is finally getting it. HOORAY!!!


And the development...WOW!!! Her vocabulary has gone from maybe around 75 words pre-op to more than 300 words. And she uses them ALL DAY LONG. Even though she had 75 words prior to surgery, she wasn't using them on a consistent basis. You would hear a word here or there. And they were very basic words. Mostly labeling. She didn't really use them to communicate. She is now putting 2 words together on a consistent basis. She knows all the names of her classmates and teachers and will say "hi (insert name)" spontaneously.


We increased her Depakote two weeks ago. She is now on 4ml three times a day. Depakote is also a mood stabilizer. Hmmm...I wonder if this has helped with her behavioral issues because the two events just so happen to coincide. She is also still on Dilantin (1.6ml two times a day). And that is it. No other meds.


Halloween...I never did elaborate on why it was such a wonderful day. I cannot describe in words how much fun we had on Halloween. Sophie got it. This was THE FIRST holiday (or any special occasion) that she understood. She had a death grip on her basket. Once we went to the first few houses, she was ready to trick-or-treat around the whole neighborhood. At one point, she had dropped her basket and her candy spilled out. She looked up at me and said "uh-oh all gone". I picked it all up and she was happy as could be. When prompted, she said "tic-a-tic" and "thank you". But other than that, she did everything on her own. She held her basket out when people offered her candy and then she would turn around and start walking to the next house. Or if they told her to take some candy, she would just take one or two pieces and put them in her basket. The only time she got upset was when we went home.

Extreme highs, extreme lows...

And everything in between. That is me on a daily basis. My emotions are all over the place. It is hard to deal with. It is hard for me to separate my mood from Sophie. We are so intertwined. So much of what she is feeling at the moment dictates what I am feeling at the moment.

Lately, the extreme lows is what constitutes my day. With a little mix of extreme highs and everything in between. Because Sophie has been doing some amazing things. But we are still dealing with a lot of behavioral issues. And you just never know what you are going to get at any SECOND of the day. And it consumes me. It sucks all the energy out of me. It leaves me in a place that I hate being in. Because I want to focus on the positive. The fact that she remains seizure-free. I don't want to take that for granted. Not for one second. Not ever. And I don't want to take for granted the huge developmental gains she is making. But it is hard to concentrate on it when these behavioral issues literally smack you right in the face.

Though, I have to say, it seems we are at another upswing. Things seem to be getting better. We had a great day on Halloween. The best day I think we have had since Sophie was diagnosed when she was 6 months old. But the last time I thought that we were on an upswing, we ended up crashing again. So, I guess you can say, I am optimistically cautious. Because it is a lot for the heart to deal with. To go from one extreme to the next on a daily basis


**I have written so many posts in the last couple of weeks. Or at least attempted to. But I have never had the guts to click "publish post". And I am having second thoughts now. I am not sure why. I really haven't said much. I am getting myself worked up over nothing. So here goes.

Why is this still happening?

Quinn never made it to the hospital today because her parent's insurance has yet to approve the treatment of ACTH.

I am speechless.

Outraged.

At how a child could be sitting at home suffering with seizures without treatment in hand because of insurance issues.

Because Questor decided to charge over $25,000 per vial for ACTH. In which it takes an average of 5 vials per treatment. Yes, that is right. It will cost over $125,000 for a treatment that is not even guaranteed to work. A treatment that only a few years ago cost around $12,000 in TOTAL.

So please click here and show this family your support. I am sure they could probably use it right about now

And to read more about how Questor keeps parents and caregivers waiting on the edge of their seat to find out if ACTH will be their child's miracle drug click here.

More on our 24 hour video EEG...

The hookup was horrible. She was crying so hard that she was making herself gag. Not that the EEG tech wasn't great, it is just that Sophie is now very sensitive to anyone touching her head. Can't blame the girl.

Once she was hooked up, she did surprisingly well. She had my and Brandon's full attention. And the attention of any visitor or doctor that came into the room. There was this one doctor, in his fellowship, that came by to get familiar with Sophie's history. She was standing on the bed and he was standing in front of her. She put her arms in the air and kept saying up. So he would lift her up high in the air. Over and over and over again. He was an average size guy and I am sure he was getting tired of lifting all 38 pounds of her over his head. But he obliged until finally I grabbed her so he could make a quick exit.

Around 9pm, Brandon went home for the night. And Sophie and I snuggled up in bed for the night. She slept very well. But by the morning, she was ready to get out of there. I think 24 hours is her limit.

Here are a few video clips...

More than I let myself believe...

So we got the preliminary results of the EEG. The news was not perfect. But it was pretty darn close. Amazing considering we are less than 5 months post-op. Though I could only dream of a perfect EEG, I truly do not know if that is possible. That is a great question I will have to follow up with Dr. Chugani. Not that it could ever be completely normal since almost half her brain was removed. But I wonder what the best case scenario is for her now.

There was a neurologist from our local children's hospital that followed Sophie's care while we were in-patient. He came by on Thursday to get her complete history and then came by after he read the EEG on Friday. There were also a few residents that came by to get her history. Everyone seemed quite interested in her case and I am more than willing to share the knowledge I have gained over the last 3 years to anyone who is willing to listen.


So the results are...

Sophie's right hemisphere looks healthy and there was NO SPIKING on the right hemisphere!!! There was SOME spiking near the motor cortex on the left hemisphere. SOME is so much better than CONSTANT. It is unknown whether it is truly coming from the motor cortex or tissue surrounding the motor cortex that was disconnected. I am not sure if we will ever know.


A bit of history...

During Sophie's grid surgery, through a burr hole on the right side, a strip of grids were placed to monitor her right hemisphere. They were concerned about her right hemisphere because there was an area of concern that showed up on the PET scan. Her EEGs always showed constant spiking on both hemispheres. And since her EEGs were constantly chaotic, they were unable to tell where her seizures were originating. That is until the subdural grid monitoring. Those results showed spiking on the right hemisphere but no seizures originating from the right hemisphere.

There was a big question going into surgery. Since there was constant spiking on her left motor cortex, we did not know if they were going to remove it, perform the MST on it or leave it alone. After the other areas of her brain were removed, there was no spiking on her motor cortex so they did absolutely nothing to it. Which is amazing considering the amount of spiking there was.


All in all...

I am so incredibly grateful that her right side is normal but a bit surprised about the spiking on the left. Honestly, I really do not know what the expectations were post-op besides controlling any possible break-through seizures with meds. I cannot wait to get Dr. Chugani's thoughts on all of this.

Dr. Chugani should have the recording by Wednesday. I am quite tempted to hop on a plane to Detroit right now and stand by his side (or Dr. Asano) and have them explain to me what they are actually seeing on the screen. If I only had my own personal EEG interpreter. I have read this and I am tempted to buy this or this. Because I have many of Sophie's prior EEGs along with her latest EEG saved on my hard drive. So if any of you white coatless moms or dads have found anything you would recommend, please let me know.

How beautiful does this clean sheet of paper look???

Chilling out with Daddy.

Getting ready to get the markers out with Mommy.

Thanks Aunt Cindy and Aunt Diane for visiting.

This sink height was way too perfect...EEK. We went through 3 outfit changes before I finally figured out to put the tray table in front of it. Though, I initially let her play in it for about 30 minutes. Any chance of getting electrocuted?

Snuggling up with NaNaw.

Having a blast coloring.

A fun visit with Red Robin.

Yet another EEG...

The med game continues. Except we are on the other side. Before we were always trying to find the right combo to stop the seizures. Now we are trying to find the right dose to make sure they don't come back. Trust me...I realize what side I want to be on. But the thought of a 24 video EEG has my stomach all in knots. Especially dealing with all of Sophie's behavioral issues. So I am nervous about her getting hooked up...tomorrow morning at our local children's hospital.

After the grid surgery, Sophie was put on Dilantin and Depakote. We had issues getting her levels up while we were in the hospital. They did quite a few boluses. They eventually got the levels up to the lower end of the therapeutic range. We got her blood drawn two months after surgery. They were really low. Dilantin was 1.3 (therapeutic range is between 10 - 20). Depakote was 26 (therapeutic range is between 50 - 100). So I e-mailed Dr. Chugani and he suggested we increase the Depakote and check levels again in six weeks. So we did. Dilantin stayed the same and Depakote increased a measly 4 points. So I e-mailed Dr. Chugani again and he suggested that Sophie get a 24 hour video EEG before making any more med changes.

I know it is only one night in the hospital. Seems like nothing compared to brain surgery. But I am still stressed. I not only have to think about myself and Sophie but there is also Elsa and Charlie. I am also anxious to see what her EEG is going to look like. Is it too much to hope for a clean EEG? She has never had a clean EEG. They were always constantly chaotic. I do not even know if it is possible to have a clean EEG after getting almost half her brain removed.

By the way, if anyone in the area wants to come by and say hi, give us a call on our cellphones.

Pumpkin Patch...

It was a gorgeous day and a spur of the moment decision. I am so glad we went.

Sophie and Elsa both had swim lessons that morning. Haley had dance practice. Afterwards, we all headed over to the toy store to pick out some birthday presents for Sophie and out to lunch. Once we got home, Sophie was unbearable. Moody, crabby, clingy, mischievous...just exhausting. We were already exhausted. It would have been nice to just come home and chill out for a few minutes. But with Sophie, she is always on the go. So we loaded all the kids up in the car and headed off to the local pumpkin patch. And we had a blast. For the first time, Sophie was...hmmm trying to find the right word...manageable. She was not doing her normal out of control behavior things like rolling around on the ground or grabbing at strangers or trying to stick her fingers in other kid's mouths. By the way, gotta love the chewy tube.

We have moments like this...where Sophie is manageable. They are few and far between. But when we get them...ahhhhh...I just soak them up.