The little things...

Well, maybe they aren't so little if you had almost HALF OF YOUR BRAIN removed.

But here is my attempt to show you all the amazing things that Sophie can do now. Starting with something as seemingly simple as putting on her own backpack. Though, she does make it look easy...don't ya think?

Make an on-line slideshow at www.OneTrueMedia.com

Video Clip...

Because I am seriously slacking on posting.

Because someone asked me if I am done blogging.

Because I just cannot find the right words.

So here is a video* for you all to see just how well Sophie is doing. Especially when you compare it to this video from a year ago (where I am requesting her to say words compared to actually having an on-going conversation with her now).




*I hope her chewing food doesn't distract you from the video. This is when her concentration and stillness levels are at their highest.

To be...

So free. So innocent. That you would start dancing to your favorite song* the second you hear it. No matter where you are at or who is watching.



*Sophie instantly fell in love with the Black Eyed Peas performing Boom Boom Pow on American Idol. We had it saved on our DVR for almost a year before it somehow got deleted. Thank goodness for YouTube.

EAT

About 2 weeks ago, Sophie started Equine-Assisted Therapy. We almost did not get in. She was at the top of the wait list and we got a spot at the very last minute. But only for the first session which is 7 weeks long.

Sophie is waiting anxiously to get on a horse.

Without even looking back, she grabs the complete stranger's hand and walks through the gate towards the horses.

Once they got her situated on top of the horse, she turned around and said "bye mommy". Absolutely no fear. No hesitation. Just pure joy.

Here she is holding onto the reins. Looking like such a big girl.

They do activities throughout the lesson.
Like put your hands on your helmet.

Or put the rings on the stick.

These were pictures from Sophie's first lesson. On our way home from this lesson, Sophie almost said the ABCs in entirety. She usually says ABCDE and then gets distracted. But this time, she said A through T. Then later that night, she finished T through Z.

Every day since then, she asks to "ride Scout" (the name of her horse). She is so very proud and loves to show everyone the pictures I printed off for her. It is an amazing form of therapy. Most of the people that work with this program are volunteers. Each rider must have three people with them at all times. One to lead the horse and two side walkers. They do a lot of fundraising events to help subsidize the cost. And if you absolutely cannot afford it, then they request that you put in some volunteer hours instead. (In other words, I highly recommend looking into this program wherever you may live.)

I am hoping that this will help with Sophie's ability to focus for longer periods of time. I am unwillingly (currently) to put her on any ADHD medications. I am trying to find some kind of alternative approach.

Therapy has always worked for Sophie. She retains the information. She just has issues with getting it to show. First it was the daily seizures. All that knowledge that she retained in the three years she received therapy through Early Intervention and preschool just came pouring out after surgery. It just proves how important therapy is even when you are not sure if the child is learning or retaining any of that information. It is absolutely amazing to watch her cognitive development take off. On the other hand, her lack of ability to focus is preventing her from showing us her full potential. So, hopefully, equine-assisted therapy will be another form of therapy that will help supplement what she is learning in school.

I think if Sophie could express it in words, she would tell us she wanted to move to a horse ranch and ride in wide open fields all day long. Because in her second lesson, she stood up in the stirrups and started bouncing up and down as to try to make the horse go faster. Here is a video from her first lesson...

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...

The sweeter side...

Note: I wrote this late Sunday night and was interrupted by a screaming Elsa that I had to get back to sleep before I could publish. So "Today" refers to Sunday.

Today was a good day. Sophie and I had a moment. Where we totally connected. Where she was focused. Where she was calm. Actually, it was more than a moment...more like 15 minutes.

Elsa and Charlie were napping. Haley was on the computer. Brandon was playing hockey. Perfect setup to do some much needed one-on-one bonding time with Sophie.

Lately, it has been very hard for me to get Sophie to have some down time. She is constantly on the go. I miss cuddling with her. She was so cuddly and snuggly pre-op. Even post-op for awhile. But when the behavioral issues were kicked into high gear, the sweet cuddly Sophie disappeared. She just could not sit still.

Until today.

We snuggled in bed together...sharing a pillow...laying face to face. I asked her to point to my nose. She did. I asked her to point to your nose. She did. That is a new thing she has learned recently...the meaning of my and your. So we went through all the facial features. She not only pointed to all of them but she said them all too. My heart was beaming with joy. To have this moment. Then we had a little conversation, that went a little like this...

Sophie: Daddy?

Me: Daddy play hockey.

Sophie: Hockey.

Me: Daddy hockey.

Sophie: Hockey.

Me: Daddy hockey.

This went back and forth a few more times. We are working really hard to get her to put two words together, so sometimes we speak in very short phrases.


Sophie: Bock?

Me: Big Rock upstairs.

Bock is Big Rock Candy Mountain DVD that we usually play on a little TV we have in my room but we moved all of that upstairs into their room where Elsa was currently sleeping. This conversation also went back and forth a few more times.


Sophie: Night Night.

Me (singing my made up Night Night song): Night Night Sophie. Night Night Elsa.

Sophie: Row Row.

Me (singing Row, Row, Row Your Boat): Row, Row, Row Your Boat.

Sophie: Night Night.

Me (singing): Night, Night...

Sophie: Row Row.

Me (singing): Row, Row...

This went back and forth quite a few more times. With a HUGE smile on Sophie's face. And even a BIGGER smile on my face. See...our nighttime routine begins with reading books. Then I turn off the lights and lay in bed with Sophie and Elsa and start singing the Night Night song. Elsa, not wanting to go to sleep just yet, will immediately cut me off and starts demanding (in her cute sort of way) another song. Once I start singing another song, she immediately cuts me off again and demands another song. Usually, it goes back and forth between Night Night, Row Row and Monkey (5 Silly Monkey Swinging in the Tree). I humor her a few times and then I say "last song" which she inevitably requests Night Night and they both fall asleep. Well, this was the first time Sophie has ever played this "game" with me. She is getting "it". She is starting to understand things on a deeper level. Simply amazing!!!


Well, our bonding time ended when she started obsessively poking me in the eyes and then went on to obsessively slapping herself in the mouth with the palm of her hand with her tongue hanging out.

But it left my heart full of happiness. Her eyes would light up and she would get all excited every time she knew I understood what she was saying. I am so proud of her. And these moments are what get me through the not so proud moments I have with her. Which I will post about soon...her behavioral issues.

But in the meantime, here's a video of Sophie and Elsa being silly one night right before bedtime. Sophie keeps saying hand throughout the video because she wants to hold Elsa's hand.

Sweet Voice...

Here are a few words that I was able to capture on video. It was right after she woke up and she was in a really good mood. A time, not that long ago, we would have instead been cuddled up on the couch because the seizure monster would have taken over. Sophie always woke up happy but it was only moments later that a cluster of seizures would wipe her out. That I would have to hold her in my arms until she regained her strength back to face the day. I cannot even begin to imagine what it must have felt like to start EVERY SINGLE DAY like that for OVER 3 YEARS. To have your brain in an electrical storm so bad that it takes over your entire body and drains all your energy. I treasure a lot of moments but now I especially treasure the moments right after she wakes up because they are no longer stolen from us.

Different point of view...

I guess Brandon and I saw 2 different Sophie's yesterday. I was surprised but happy to read about the things she did yesterday that I didn't know of. Amazed really.

Brandon captured some of the things he talked about on video...

Sophie & Elsa Reunited...

This post requires no words. Maybe just some tissues...

Sweet Licks...Umm Kisses

Enjoy...

In a new room...

It's around 4pm. Around 2pm Sophie was transferred from the ICU to a regular monitoring room (#586). Dr. Asano and team immediately started the motor and sensory mapping. Everything went well. In motor mapping, they send an electrical current to the electrode on the brain which causes a part of the body to move. In sensory mapping, they tape a device to the area which sends electrical current and then monitor the EEG to see what area is being stimulated.

Sophie is still in and out of sleep. She vomited again right before she was transferred. They gave her another dose of Zofran. She is still doing extremely well. Around 3pm, she received 1mg of morphine. Pretty boring stuff...just the way we like it!!!

Just to spice things up a bit :) here's a video of the sensory mapping...

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.