What a way to start off the New Year...

ER visit (via ambulance), overnight video EEG, MRI, gobs of seizures, lots of medication changes and mood swings. All that on top of the normal this time of the year illnesses.

Let's just go straight to the seizures. Sophie had a relapse about 11 months post-op. We increased her Depakote and they immediately stopped. Then she relapsed again 2 months later. We again increased her Depakote and they immediately stopped. (But in the meantime, we scheduled a 24hr video EEG. But, by the time we got in for it, her seizures had stopped so nothing could be recorded on the EEG to determine where the seizures were originating from.)

Then she had her third relapse a few months later (it is now August). So instead of immediately increasing her meds again (hindsight...I believe this was STUPID), we decide to go in for another 24 video EEG to figure out what was really going on. Unfortunately, it took at least 6 weeks to finally get in. And they read absolutely nothing new on the EEG. So I (because I blame myself for everything) wasted all that time doing nothing while she continued to seize EVERY. SINGLE. DAY.

So we decide to wean the Dilantin* and start Vimpat. Seizures became worse. I was in a panic. I did not know what to do. I felt so completely lost. So depressed. So worthless. So helpless. So I turned to Dr. Chugani. We decided that we needed to see him in person to get some direction on what to do next.

*Through all the Depakote increases, her level remained in the mid 30s because of the Dilantin interaction. That's why we weaned it.

Which brings me to 2 weeks ago. A whirlwind of a week. Starting off with the ER visit because Sophie started nonstop trembling at 3am. Something she has never done before. Then we left for Detroit a few days later. Where she vomited at least 4 times in the middle of the night during her EEG. Which almost cancelled her MRI. Luckily, everything worked out and we completed all the testing and met with Dr. Chugani.

He got straight to the point. She was having seizures that originated in the left central region (the motor cortex on the side of the brain she had surgery...the only remaining tissue on that side). Since there was a focus we could opt for another surgery.


Hold up. Wait. Huh? What? Slow down. Breathe.


He did back up and say that we should try a few medications first. With surgery, it's like the brain resets itself. So we are able to go back and try medications that she originally failed. Because maybe those medications were controlling the seizures originating in the left central region but not the ones that were originating in the areas of the brain that was removed. So maybe this time around it would be different. Makes sense.

She is having Infantile Spasms (I hate that name...sounds way too mild). So we need to start over with the front line treatment for Infantile Spasms.


ACTH.


Which, at this point, sounds better than surgery. But it still makes the room spin and makes me want to vomit.


F**K.


That's what I'm thinking. This is f**cked up. You remove almost half her brain and it is not enough for those f**king seizures. They (seizures) want more. Well, they can't have more. She's had enough of her brain removed. ENOUGH. I feel so superficial for wanting to hold on to that little strip of brain. SO SUPERFICIAL. Because if it was any other area...I'd say take it. Which I did...they already have. This is all that is remaining.

So we decided not to jump onto the ACTH bandwagon just yet. We weaned the Vimpat and added back the Dilantin and reduced the Depakote. Wishful thinking really. It worked once. Maybe it will work again. We will see. We have the rest of this week to give it a chance. But our local neuro is already getting things started on the ACTH. It won't be so easy to administer this time around. She's 5 years old. She's 46 inches tall. She weighs 47 pounds. She is strong. Not so easy to inject her with a big ole needle in her thigh twice a day. It's not a quick easy poke.

So that's where we are at. We have to be very aggressive. We are fortunate the seizures have not yet spread to the right side of the brain which would be detrimental to her learning and development. So, if the ACTH fails, then we will try Vigabatrin. And if Vigabatrin fails, then...most likely...surgery.

But, I have to add... I DO NOT EVER REGRET Sophie having the first (and hopefully only) surgery. NEVER. Her developmental gain has been more than worth it. She is amazing. And she continues to amaze us. There isn't a day that goes by where I am just in awe of her. Her speech and language is so rich. And her memory is so clear. She talks in complete sentences about things that have happened months ago.

I am holding on to the hope that I do not have to put her through any more pain. I just don't know if my heart can take it. Did I mention that we are also in the midst of all the paperwork and testing for her to transition to kindergarten in the fall?!?!

EEG results...

We met with the neurologist the morning following the hookup. It is the hospital's procedure to go over the findings and to be sure we got all the data we need before they disconnect. Of course we did, since she has these "movements" every single day. Usually, she has several of these episodes in a 24 hour period.


There was no consistency in the EEG pattern with these movements. But, they believe the movements look like seizures so they believe they are seizures. They believe that the scalp EEG is not able to pick them up. In the remaining tissue in her left hemisphere, she continues to have intermittent spiking when she is awake and frequent spiking when she is sleeping.


She is currently on Dilantin and Depakote. It is a good combination to be on coming out of surgery because they work through different channels in the brain. But the Dilantin speeds up the metabolism of Depakote, so we were never able to get her Depakote level to a therapeutic dose. With each relapse, we increased the Depakote which would temporarily solve the problem. So we are taking a different approach this time. We are weaning the Dilantin in hopes that it will increase her Depakote level and stop the seizures.


We are currently weaning Dilantin with no relief in seizures. In fact, they are more intense. I now have no doubt...they are definitely seizures and they are getting worse. I am not sure what to do. Either her brain needs the Dilantin -or- she is having withdrawal seizures that will eventually stabilize. In the past, EVERY SINGLE TIME we have weaned an anti-epileptic drug (AED), she had withdrawal seizures. Even if the drug did NOTHING to stop the seizures she was currently having.


So, we will play the "wait and see" game and hope the past holds true. I really do not want to add another AED. Dr. Chugani suggested Vimpat. That is one she has never tried so it's time to do my research.

Guilt

That is what motivated my shopping trip today. Causing me to buy 3 bag full of goodies for Sophie. New toys, puzzles, DVDs and her favorite snacks are what filled those bags.


Because those bright red, tear-filled eyes are already haunting me. They are already breaking my heart.


Tomorrow, she goes in for a 24 to 48 hour EEG. Most likely 24 hours but they threw in the 48 hours for "just in case". She HATES getting the leads glued to her head. HATES it. HATES it. HATES it. It is pure torture for her. You should see the fit she throws for me when I want to brush her hair. Her short little bob cut with no tangles hair. She is very sensitive to people* messing with her head...as you can only imagine given her history. Because I still flinch when her mouth comes close to my arm in remembrance of her biting sprees. So I can only imagine the nightmares that must flash through her mind. They still flash through mine.


We are going in because she had been doing some "odd movements" that look eerily familiar. We upped her medication twice and things are looking much better. But we still have to know what is going on.


* Except for her 8 year old cousin Colin. In which, she would do ANYTHING for him...brush her teeth, lay still during diaper changes, brush her hair, take her medicine, etc. She absolutely adores everything and anything he does. He is the coolest person in the world to her. Colin can you please hop on a plane and be here by 8:30am tomorrow?

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.

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.

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.

Bear with me...

I am trying HARD to sort through my thoughts and feelings. Life is not as bliss as I thought it would be post-op. So many emotions. So many issues. So many things that I wish not to talk about because there is too much guilt wrapped up into it. But I am not being honest with myself. It is what it is and I am trying to push the guilt aside. Because I have to. For Sophie. I have to deal with these issues and stop pretending they are temporary. Because it has been more than 3 months post-op.

She remains seizure-free. Again, I never know how to write that. When I type it and see it written before me...it looks like a simple statement. But it is so much more than that.

Before Sophie's subtotal hemispherectomy, these were my thoughts... If we could just stop the seizures and focus just on development, life would be great. We just have to get through this surgery successfully. Everything here on out will be manageable. WRONG.

And that is where the guilt lies. Because if I were to complain about her post-op issues, it would seem like I do not appreciate the fact that she is seizure-free. But I do. More than ever. So for this post, I am going to try hard to put the guilt aside and be honest. Because these things need to be said. I'm scared, though. I'm scared these words will someday haunt me. Because if her seizures were to ever return, these things I am about to write about will be trivial.

Deep breath, here I go...

Sophie is out of control. Everything I do with her feels like a monumental task. Every...little...thing. I try so hard to be patient with her. Because I realize there is a lot going on in her brain right now that she is unable to comprehend. That I am unable to comprehend.

Her behavioral issues are such that we added 12 hours of ABA therapy to preschool. That is why she goes a full day. Her pediatrician talked to me about the possibility of needing to put her on an ADHD drug in the future. Dr. Chugani suggested maybe putting her on a behavioral med called Risperdal. None of which any of us are ready to do at this moment...just something to think about. I will discuss all of this in length with Dr. Chugani at her follow up visit in 3 months.

The magnitude of her behavioral issues are hard to explain. Each little act may not seem significant. But it is the fact that it is one act after another after another.

I am so glad that she was in preschool for almost a full year prior to surgery. Because her teachers and therapists know what she was capable of before surgery. They are a great support system for me.

Now her behavioral issues are not to be confused with her development. Because she continues to make stride developmentally. The number of words she is able to say increases by the day. Her awareness of her surroundings continue to increase. Her sense of humor amazes me.

Please, please, please don't think I am not grateful for all that she has overcome in these last 3 months. I DO appreciate it. I AM grateful for it. And I am sorry to those who I may have offended for complaining about things that seem so trivial.

Happy...

There is so much to say but I can't seem to motivate myself to update the blog. Not that I don't have MANY wonderful things to say...it's just that my mind is mush nowadays. Everytime I sit down at the computer, I stare at a blank screen and my fingers don't seem to move. So I'll try to update as much as I can right now while I feel somewhat coherent.

I'll start off by saying Sophie remains SEIZURE FREE!!! It has been 2 months and 3 days!!! Her development has really taken off. She is doing so much more than I would have ever expected. Both physically and cognitively. I had no idea that her physical development would take off too. She is hopping and running. Her gait is much more steady and normal. When she came out of physical therapy last week, she ran to me. Really ran to me. It wasn't her usual head down, knees locked, funky little run. She looked straight at me and ran by lifting her feet off the ground and bending her knees. My heart about bursted out of my chest with excitement. Her therapist said that she had worked on running that day. Therapy...what a wonderful thing. It is amazing how they know exactly how to put a child into position to help them learn. I remember when Sophie was learning how to transition from laying to sitting. There are so many steps involved that normally you wouldn't think about. But they know exactly what muscles are involved and what exercises need to be done to get those muscles working properly. I am so grateful for ALL of Sophie's therapist.

Sophie is learning NEW WORDS EVERYDAY!!! Words that I don't even teach her. She is picking them up on her own. Just this past Friday, I was talking to her therapist about how happy she is to go to therapy now. Before surgery, she would scream and cry when we walked into the building. Her therapist had to carry her off because she would cling to me or drop to the floor. After surgery, she wouldn't cry as hard but when we walked into the building she would point to the door and say "bye-bye" and "door". Now she is SO excited to go to therapy. She walks right into the building and plays with the toys in the waiting room. When the therapist comes to get her, she grabs their hand and walks away without giving me a second glance. So as her therapist and I were discussing how happy she is now, Sophie was busy munching away on a snack. I didn't think she was even paying attention to what I was talking about. That was until I was buckling her into her carseat. She said in a clear voice without her little spin on the word...HAPPY. Just like that. With no prompting. With no teaching. She is now learning things without having me sit down with her for hours trying to teach her something new. Absolutely amazing!!!

I promise to update again soon...with photos and a video. I am trying to capture some of Sophie's new words on video so you can hear her sweet voice.

Happy Birthday NaNaw...

Sophie decided to give NaNaw (Grandma Debbie) the best birthday present ever. If you know NaNaw, you would know how much she loves and cares about Sophie. They have a special bond.

While NaNaw was playing with Sophie in her toy closet, Sophie pointed to the top shelf and said animal. She was pointing to her toy farmhouse with the animals inside. I was in the other room and heard it clear as day. Sophie just said her first 3 syllable word!!! She barely even says a 2 syllable word. Plus, she has never even attempted to say animal before and she used the word appropriately.

When Brandon got home from work, we were telling him the story and she repeated it again for him...several times. I honestly don't know if I would have believed it if I didn't hear it myself. It wasn't the clearest sound pronunciation but it was close.

Sophie was in a goofy mood tonight. I love it when she is like that. Full of laughter and giggles. She has become quite the mischievous one. Brandon showed her how to get water out of the water dispenser on the refrigerator door. She has seen us do this a million times but has never attempted to do it herself. As soon as I saw it, I thought BIG MISTAKE. So a few seconds later, she takes her cup over, fills it up with water (let me remind you that she is in a VERY GOOFY mood) and executes it perfectly. But as she is walking away, giggling her little butt off and holding the cup up in the air with only one hand, she is spilling it everywhere. And all we can do is laugh. She gets it. She is learning. She is happy.

And this is only one of many stories tonight. She was up to many crazy antics...giggling and laughing the entire time.

By the way, pre-surgery she would have EXTREME meltdowns if she spilt just a drop of water on her when she was drinking out of a cup or if she dropped a piece of food on the ground. And I seriously have no idea why she was like that. I tried my hardest to make it seem like it was no big deal. To the point where I would drop things and laugh just to show her it was okay. Nothing worked. She could not stand the idea of anything spilling.

So, now she is the complete opposite. I will take giggles over meltdowns any day.

Happy Birthday NaNaw!!! Thanks for spending the day with us.

A new do...

A few weeks ago, Amanda (Haley's mom) came over to give Sophie a haircut. I just couldn't imagine having to take her to a salon and having to explain everything. I love it. Even if it wasn't for the shaved area. It makes her look older...not my baby girl anymore. Well, she really hasn't been ever since Elsa was born. I was amazed that once Elsa was born, Sophie instantly looked different to me. I wonder what I will think of Elsa once the baby boy is born. I will be induced on July 7th if he doesn't get here sooner. Which I really doubt he will. After all I have been through and he is still not showing any signs of coming anytime soon...I think he is content in there.

Sophie is doing wonderfully (except when it comes to sleeping at night...a whole other post). She is getting stronger everyday. And she laughs SOOOOO much. At everything and anything. I LOVE it. She has never laughed like that before. She is just having so much fun.

We all had a wonderful and productive weekend. We got to spend time with Brandon's relatives from Kansas which is always so much fun. Especially with Sophie being so much more interactive with people. We all went swimming and I was brave enough to let Sophie go down one of the kiddie slides (this is the second time we have been swimming since the surgery...the first time I was way too nervous to let her go down the tiniest slide...too scared she would hit her head somehow). My parents took the girls on Saturday so we could get all the rooms rearranged and ready for the new baby. A much bigger task than I thought it would be since all the kids ended up in a different bedroom. All that is left to do is paint. But it felt so good to clean out the closets and rearrange everything. Bye bye clutter and hello Goodwill. Grandma Debbie came over today and I got to catch up on some much needed sleep...which I should be doing at the moment.

All about Sophie...

A post dedicated to all the new things that Sophie is doing...26 days post-op...26 wonderful SEIZURE FREE days!!!

Cognitively...

She is beyond what she was doing before the surgery. She is doing better than what anyone would have ever expected. She is saying new words all the time. She is using words appropriately. Instead of just crying when we walk into the building where she gets private therapy, she now points to the door and says "byebye" and "door". In general, she just talks more. Requesting things using words instead of just pointing.

She is very expressive in other ways. She laughs a lot. I think she actually "gets it" when someone does something funny...especially when it is Elsa. She is more alert and interactive. She makes a lot of eye contact and she really seems to check things out.

She is starting to count but I don't think she quite understands it. If I say "one", she will say "two" and "three".

Most of all, it's the little things that she does that I notice the most. Like the other day, when she walked over the vent on the floor. She stepped back, bent down, touched it and stood back up. It was like she noticed it for the first time.

****

Physically...

She is gaining her strength back but she has some work to do. She mostly lacks endurance. It is all just a matter of time. Her walking is getting more stable. She is starting to adjust to her right peripheral vision cut in both eyes.

Today was the first time she was able to climb into bed. But she refuses to walk up the steps to the second floor. Though, she is okay with walking up a few steps to get into the house and the small staircase at therapy.

The more tired she is, the less she uses her right hand. That is where I see the most deficit in her physically...the use of her right hand. Though, she is doing phenomenal with her left hand. She is independently using a fork and spoon on a consistent basis. She has never self fed herself like that before.

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I've tried to explain all the new things she is doing. There really is so much more. So much more than "what" she is doing. It really is just that look in her eye. You notice things clicking. Things make much more sense to her. She truly understands what I say to her. If I say something she doesn't want me to do, she will get upset as the words come out of my mouth. Before, she actually had to see the action to fully understand what was about to happen.

And for whatever reason, she has become much more attached to me. It's like she is finally going through the whole separation anxiety stage.

She has a new cry. That's kind of weird. It is a very high-pitched, scream-like kind of cry. Maybe she realizes I jump quicker when she cries like that...hmmm I wonder.

No matter what it is...it has all been wonderful. Seeing her change. Seeing her grow. And enjoying every single minute of it.

All about preschool...

Last week, Sophie had her first somewhat full week back to school. Her normal schedule is Monday through Thursday mornings for 3 hours. She had a full day on Monday and then we took Tuesday off to make sure she was well rested for a full day of therapy on Wednesday. Unfortunately, we were all a little too well rested as we overslept and Sophie was about an hour late for school. On Thursday, she seemed to have a wonderful day. She was full of smiles and was very talkative when I came to pick her up. Miss Lisa (a paraeducator in her classroom during the regular school year) came to see her. Miss Cherie (her teacher) and Miss Sharon (another paraeducator) are in her classroom during the regular school year as well as in the summer. I think it helps A LOT for Sophie to get back into her routine with having the same classroom and seeing familiar faces. Miss Brandi (her one-on-one paraprofessional) is off for the summer so Miss Marilyn (a school nurse from another school in the district that is off for the summer) is taking her place.

Needless to say, Sophie is in very capable hands. I LOVE Sophie's preschool. I feel so comfortable having her there. I am so thankful for her teacher, paraeducators, paraprofessionals and therapists. It takes a very patient and caring person to not only work with preschoolers but those with special needs. When I spent the day with Sophie at her preschool a few weeks back, I was exhausted when I left. Not because of Sophie, she did great. But from watching the amount of energy it takes to keep the routine flowing in such a smooth manner and knowing the little tidbits of each child to help them reach their full potential. THANK YOU to all of you.

I can't believe she went back to school ONLY 17 days after having brain surgery. It is quite amazing. She is doing so incredibly well.

These moments...

(Note: I wrote this on Saturday evening but never got around to posting it until today so "today" and "tonight" is referring to Saturday.)

Are the ones I think I will remember forever. Sometimes I feel like these moments are not real. That this is not my life. Because I can't believe this day is here. Life feels so normal. No...much better than normal. I am on a high. Brandon looked at me tonight with happiness radiating from him and said I love our new life. Haley is with us today. Our lives feel so complete. I never want this feeling to end. Pure joy.

Our bedtime routine for our youngest girls has always been the same. But tonight it felt so different. It felt extra special...seeing Sophie's eyes light up like I have never seen them before. A smile on her face that was so pure. Part of our routine is letting Sophie and Elsa dance around naked after bath time (but only for a short bit to avoid the peepee messes and then we gradually get them in their diapers and PJs).

Brandon pulls them out of the tub and wraps a towel around them and hands them off to me. Where I snuggle with them in bed. Then he turns on the music...loud. Big smiles appear on their faces and you can see the excitement.

Tonight, Brandon swooped Sophie off the bed. Her eyes sparkled as he twirled her around. I felt like it was happening in slow motion as I watched them dance and bounce around.

I am amazed that JUST 2 weeks ago, Sophie was 1 day post-op from major brain surgery. That today is 2 weeks of seizure freedom. That today she is up and walking around. That today she is saying more words than she was before surgery. That 2 weeks ago marks a new beginning for Sophie...a new world has opened up to her. A world that is much clearer.

A great substitution...

Instead of waking up in the middle of the night with a cluster of seizures...

Sophie now wakes up babbling nonstop.

It was 3am but it didn't matter. The sweet sound of her voice was mesmerizing. I only wish I had my video camera to catch the sounds but I didn't want to do anything to distract her.

She started off by saying "BarBarBarBarBarBar....neeeeeee". She always said "Bar" for Barney (her most beloved thing to watch on TV). And she always said "knee" when naming body parts. I have worked with her for months trying to get her to put the sounds together but she couldn't...until the other night.

Then she started to put all kinds of sounds together. Like "MaMaMaMaMaMa....meeeeeee" and "DaDaDaDaDaDa....meeeeeee". This went on for at least 30 minutes.

Right before she fell back asleep, she said "Bar....nee". Just a short pause between the 2 syllables. Hmmm...I wonder what she was dreaming about.

Day 13...Still NO SEIZURES!!!

Yesterday, Uncle Jason came over to watch Elsa so I could take Sophie to preschool. Later that afternoon, Grandma Debbie came over to play with the girls until late that night. Then that evening, Stephanie brought us dinner. This morning, Aunt Colette came over to watch Elsa so I could take Sophie to therapy and also to play with the girls. Later this afternoon, Jake came over to play with the girls and bring us dinner. THANK YOU all for being here for us.

No stopping her...

Sophie stood up by herself today!!!

She was sitting in the middle of the sunroom (more like her playroom since it is overtaken by toys) and pushed herself to a stand and walked right over to me with a HUGE smile on her face. She was so proud of herself.

It is only a matter of days now that she will be doing MORE than she was doing before surgery. She is already there cognitively but still a little weak physically.

She amazes me. Less than 2 weeks ago, she had a majority of her left hemisphere of her brain removed!!! Less than 2 weeks ago!!! How is that possible?!?!

Back to school...

Yesterday, Sophie had her first day back at preschool through our local school district. We decided for her to go back on Wednesday because that is the day she gets speech, occupational and physical therapy. I wanted her therapists to be able to evaluate her and get their thoughts along with her teacher's thoughts on going back to school.

She had an amazing day. I was surprised by her endurance. We were only going to stay for half a day but we ended up staying the entire 3 hours.

She remembered her routine and was even showing me around the classroom. There was a moment when we got back from speech therapy that her classroom was empty. Her classroom is set up where they have different activities in different areas of the room. She walked up to one table in particular and said "draw". Sure enough, it was the table they draw at because there was all kinds of art supplies right next to it.

She got excited for snack time and had no problems walking down the long hallway to wash her hands in the bathroom...the same hallway she was too tired to walk down after physical therapy.

Her occupational therapist worked with her in the classroom during snack time. The way that girl eats nowadays....you would think I was starving her. She is so motivated by food and perks up every time I say the word "eat". Trust me...I feed her plenty and even switched her to whole milk to get some meat back on her bones. She lost 3 pounds in the hospital which may not sound like a lot but that is 10% of her body weight.

So by the end of the day, we decided that she will go back to school full-time (4 days a week for 3 hours a day) next week and will have a one-on-one aide that is a nurse.

A new beginning...

I feel like a different person. A different mom. A different family. I feel like a huge weight has been lifted from me.

I know this is only Day Eleven of seizure freedom and we still have a long road ahead of us. But it is a road filled with excitement and hope. A road where I get to witness all the new things that Sophie will get to do...that she is ALREADY doing.

To have one morning...JUST ONE MORNING...in which you can wake up next your child with big smiles on your faces...without the knowing that a big cluster of seizures is about to take that all away...it is indescribable. There is still that moment...a moment where I hold my breath and watch intensely...wondering if IT will come. But IT doesn't. And knowing and wondering are two completely different emotions.

I am treasuring each and every moment. Holding on to the moments that use to be stolen from us. Because you just never know. Sophie was once seizure free for 33 days. But the difference between then and now is that we had no idea why Sophie became seizure free. It just happened. There was no change in medication or diet. There was no surgery to explain why.

It's been a crazy few days. Trying to get settled in. Trying to figure out our new routine. I set up a few private therapy sessions for Sophie this week. She had PT this morning which her therapist was quite impressed with how well she is doing so soon after surgery. Tomorrow, I will take her for a short day at preschool. She will get PT and OT while she is there and I will stay with her the entire time.

We have been receiving so much support since we have been home. Aunt Colette decorated our house with flowers, balloons, a banner and a cake for when we got home. Yesterday, Aunt Cindy came over to visit with the girls and brought us lunch. Heather and Jennifer (both friends that live in our neighborhood) brought us dinner last night and tonight. This morning, Stephanie (another neighborhood friend) watched Elsa so I could take Sophie to her PT appt and go to my OB appt**. My mom came over after that to help out with the kids. THANK YOU to everyone for being so supportive so that we can truly enjoy our first few days at home. And how wonderful it has been to be home together as a family...I am bursting with joy.

I promise to update soon with all the new things that Sophie has been doing.

**I had a routine ultrasound to check the position and weight of the baby. Everything looks great.

Home Sweet Home...

We are home!!! I can't believe it. It feels so surreal. I have never been so tired but at the same time I can't wait for morning to come. To see the expression on Sophie's face. To hold Elsa in my arms again. Time to go cuddle with my sweet Sophie.

Where did our Sophie go???

Because we have never seen her so awake and alert before!!! It is amazing to see her so wide eyed and taking in everything around her. She has her old spunk back plus so much more. She is happy and laughing and just being her silly self. She is saying new words..."home" and "barbar (barbie)" is her latest. She said "home" four times in a row. We told her soon baby girl soon. Hopefully tomorrow but probably Monday. With the little that she has ate today (only a few bites of jello, a quarter of a banana, a couple grapes and a milkshake), she has so much energy. She woke up at 7am this morning (but didn't have a restful night of sleep) and only took an hour nap today. It's a little after 10pm and she is still going strong. She is watching Big Rock Candy Mountain and is bopping herself on the head (like bunny fufu). It is amazing now to realize how much those seizures really wiped her out.

This afternoon, Brandon gave her another shower. For the shower, they disconnect the tubing for the IV and wrap her arm in plastic. It was around 2pm and she wasn't due for another IV med until 6pm. The nurse allowed us to stay disconnected so we took advantage of it. She had PT which she cried the whole time but did wonderfully walking. Then we put her in the stroller and took a long walk outside...it was so nice not having to drag the IV pole around. The nurse came around 6:30pm to give her Zantac through her IV. It leaked and her arm started puffing up. The IV came out of her vein. A blessing in disguise. She is now on all oral meds. She had her first dose of liquid suspension Dilantin mixed with Sprite and she drank it just fine. And she hasn't vomited since right after breakfast this morning!!! I think the only reason she did vomit this morning was because of her gag reflex after taking a bite of toast. I think her esophagus is sore from all the vomiting. After that we gave her only soft foods (see above).

She had so much fun today and she really cracked us up. I am LOVING seeing her like this.

NO SEIZURES TODAY!!!

NO SEIZURES SINCE HER SUBTOTAL HEMISPHERECTOMY!!!

I LOVE THE SOUND OF THAT!!!