Home Sweet Home

We are home.  We actually got home late Thursday night.  Sorry for the lack of timely updates.  Sophie is doing well.  She is getting stronger by the day.

Everything has caught up to me and I am just completely exhausted.  I am trying to get back into the routine.  And with the holidays right around the corner, I have a lot on my To Do list.  But I am just soaking in these days...being back at home with my family.  I missed Elsa and Charlie a lot.  And it feels good to be cuddled up next to Sophie in my own bed (did I mention that I slept 7 straight nights in a hospital bed with Sophie!).

Happy Holidays!

A True Fighter...

She is doing Ah-May-Zing!!!  What a difference a couple of days have made.

Here's a picture just a few hours after surgery on Friday...

Then she slept for the next 3 days...

Physical Therapy and Occupational Therapy came this morning.  She was MAD.  I had to leave because she kept crying for me.  So, of course, I went down to the gift shop to buy her a prize...cute little slipper socks.  But, by the time I came back up, she was already in bed looking great.  She said "Mommy, I did good".  She was so proud of herself.  They had her (with support) walk down the halls of the hospital.  She is still weak but I know it will only be a matter of time before she gains her strength back.

Looking so awake and alert after therapy...

Do you see that piece of graham cracker she is holding?  She is eating and drinking, though we are taking it VERY slowly.  She gets a few sips of water an hour and has ate a little over half a graham cracker square.

After therapy, these clowns came by...

She is holding a magic wand in her RIGHT hand and popping bubbles.  What a great therapy idea!

I am hopeful that we will be home by the end of the week!!!

Thank you all for your love, support and prayers.  It really has lifted me in spirit.  You all have been on this journey with us and have been an important part of the healing process.  Thank you from the bottom of my heart.

One day at a time...

The most important thing... Sophie is seizure-free!!! I lost focus of that a few times in the last couple of days. She surprised us coming out of surgery on Friday. She was so awake and alert and thirsty. We tried to take things slowly to make sure she did not get sick. And she did not. She was a little swollen which was to be expected. She was doing amazingly well, all things considered. So I got my hopes up high that she was going to recover quickly this time around. She was already sitting up on her own, talking and drinking. I felt like we were already coasting. She showed a slight weakness on the right side of her body but I know she will regain most (if not all) of it with therapy so I was not all that concerned. She also did not seem to be in any pain. Things were beyond all expectations. But Saturday and Sunday were different. She has been sleeping almost nonstop. Though she was awake but not interactive for a period of time this afternoon. She refuses to take a sip of anything and continues to vomit or dry heave almost every time she sits up. But those things are minor and she will come around. I just need to be patient and focus on the big picture.

Surgery is over!!!

Dr. Asano and then Dr. Sood came in and talked to us. They both said all went well. They removed the cushion that they planned on and then performed the MST over the entire sensi-motor cortex. When they replaced the grids, they did not see any spiking. Therefore, they did not feel it was necessary to remove any additional tissue which will give her a better chance at preserving the motor function in her right hand. This is GREAT news so far!!! Now it is a "wait and see" game to see how much weakness she has and how much therapy she needs. Just like we wanted Sophie to have lots of seizures to be captured during the grid monitoring, we are also wanting to see weakness immediately after surgery. But we are hoping it will only be temporary and she should regain her strength within two weeks.

Thank you for all your prayers, support and love.

Game Plan

This is hard.  So hard.  Because I know she is going to come out with some weakness.  I just don't know how much yet.  And I do not know how much of it will be permanent.  They said to expect her to get frustrated and that she will need the support of her family to get through it.  Those are difficult words to hear.

Doesn't she look great?

Plans are different than what we thought they would be before we started this whole process again.  Initially, we thought she would just need Multiple Subpial Transection (MST).  But the intracranial subdural grids showed a focus.  And for a lack of better terms, you can say she has focal hypsarrhythmia in the cushion surrounding the lower bottom half of the motor cortex.   So, Dr. Sood is going to resect the cushion on the entire left side of the motor cortex.  Then, perform the MST on the entire sensi-motor cortex.  They will once again put the subdural grids back on and monitor the brain wave activity.  If they are still seeing spiking in the lower half of the motor cortex (which controls the facial muscles), they will then resect that tissue.  And then close her up and hope to God that she never has a seizure again.

A7 and A8 represents the cushion surrounding the lower bottom half of the motor cortex. 

Speaking of seizures, she has not had a visible one since 11:55am yesterday.  Just 3 hours prior to that, they had started her on Fosphenytoin (IV form of Dilantin).  Very interesting but that doesn't change the surgery.  The focal hypsarrhythmia and spiking still showed on the EEG.

During her left subtotal hemispherectomy (that she had 2.5 years ago), Dr. Sood removed all the tissue in her left hemisphere except the sensi-motor cortex plus one centimeter of tissue (cushion) that surrounds it.

Okay, let me try to explain this in simple terms because I know when I tried to explain it to my family last night, it became confusing to them.

Think of Sophie's sensi-motor cortex as a slice of white bread.  Now draw a vertical line down the middle of the piece of bread.  The left side of the bread is the motor cortex.  The right side of the bread is the sensory cortex.  The vertical line is a major artery.  The crust that surrounds the slice of bread, that is the cushion.  Between the cushion and sensi-motor cortex are small arteries that supply blood to both areas.  The closer you get to the sensi-motor cortex, the higher the risk of impairment.  Thus, the reason for the cushion.

Now think of taking a scalpel and separating the crust from the white part of the bread without actually removing any of the white part and avoiding all the arteries.  Not easy.  Now turn the crust of the bread into a squiggly line.  Even more difficult.  Dr. Sood will be performing this surgery microscopically.  

The part of the cushion they are removing is attached to the motor cortex that controls her right hand and right side of the face.  Therefore, there will most likely be weakness in this area.  But not total loss of control.  She will probably lose 20% of the function of her right hand.  But she should regain all of her facial muscles because the head is bilaterally controlled by the brain.

I believe this change in plan is good.  I *think* it gives her a higher chance of seizure freedom.  Even though it does give her a higher risk of motor impairment, the higher chance of seizure freedom outweighs that risk.

Does this all make sense?  If not, ask away.

By the way, the first incision was made at 10:40am.

So far, so good.

Sorry for the lack of updates on my blog.  Part 1 of the surgery went well.  Grids are placed and she is being monitored.  She has woke up a few times and seems to be doing well.  Very thirsty but no pain.

She lost a lot of blood and looks really pale.  They gave her some blood while in the OR and they are about to give her some more.  

She had a big cluster of seizures around 10:20pm, so they will have plenty of data to review tomorrow.

Brandon is taking the night shift and I am getting ready to head back to the hotel.

Day 1 (Take 2)

Her eyes widen as I carried her into the operating room. The lights were bright. Everything was white except for the few things that were draped in the sterile blue cloths. Everyone was wearing surgical gowns and masks on their face.  

It was much harder this time around. To kiss her goodbye. She is much more aware. I could feel the sense of panic in her. As I set her on the operating table, she did not want to lay down but she did. Then came the bubble gum scented mask that would put her to sleep. She fought it hard. Tears started pooling up in her eyes. It broke my heart. I sang her We're Off To See The Wizard as she drifted to sleep. I was hoping she would dream about it while she was under. It is her all time favorite movie. She has watched it so many times that she has most of the movie memorized. Her Grandma Debbie bought her Wizard of Oz puppets and a pop-up book that she treasures. She loves to act out the movie with those puppets almost on a daily basis.

I kissed her goodbye around 9:15am (Eastern time) and surgery started at 10:21am.

Here are pictures from this morning...

Hospital Owl and Hootie along with her own owl shirt.
Can you tell we have a theme going on here!

Reading the Wizard of Oz pop-up book with Daddy.

Thank you all for your love, support, thoughts and prayers. It means the world to us. It warms my heart and soul to know that so many people care.

My beautiful babies...

I know, I know...they are not babies anymore.  But they are mine and I love them so much.  They are perfect...each in their own unique way.  I am going to miss each and every one of them this week.  It breaks my heart just thinking about it.  Even though Sophie will never physically be very far away from me, she will just as well be a million miles away when she is in surgery.  I love her so much.  I know I am making the right decision, even when I doubt myself.  She is going to be in trusting hands that will be guided by Him.  I know she is going to be alright but it doesn't make it any easier.

Packing sucks!

We leave tomorrow morning for our trip to Detroit.  I am trying to stay strong...for Sophie.  And a piece of me is already starting to miss Elsa and Charlie.  I hate this.  I hate it so much.  But the possibilities that this trip may bring...it is worth every moment.

So my current thought...

What do I tell her?

We have told her we are going on a trip to see Dr. Chugani.  She knows who he is and she is kind of excited to stay in a hotel.  But we haven't told her anything beyond that.  Last time around, I didn't worry about this.  She wouldn't have understood anyway.  But this time?  This time is a whole different ballgame.  She is so smart.

I mean I have to tell her something.  Can you imagine waking up from brain surgery and not knowing what the heck just happened?!?!  So I have to prepare her somehow.  I just don't know how.