Take Two

Starting the blog post is sometimes the hardest.  I wait so long between postings that I have way too much to say and don't know where to start.  But I'll just jump right in.

Sophie is scheduled to have another surgery.  Another two-stage brain surgery.  In the first stage, they will place the grids to monitor the seizure activity.  Then, two days later, they will perform the actual surgery...Multiple Subpial Transection (MST).

I can talk about it so matter-of-factly at times.  With no emotions.  But the closer we get to the date, the more real it feels.  I am starting to feel the weight of it all.  I think what scares me the most is how Sophie is going to react to everything.  This time around, she is much more aware.  But I talked with another mom, Emma, whose son, Alex, had a second surgery when he was 7 years old.  She was able to put my mind at ease a bit after hearing how well (relatively speaking) he did the second time around.

But, it is brain surgery.  And when I sit down and think about it...really think about it...it is difficult.  More difficult this time around than the first.  I am already starting to feel the panic.  We are leaving in exactly two weeks from today.  Just typing that...seeing it in writing...brings tears to my eyes.  The packing, organizing and what not of getting ready to go out of town is NOT what is putting me in panic mode.  It's the fact that I want to soak up every last second of time I have with Sophie before I have to kiss her sweet little forehead goodbye, once again, before I walk out of the operating room.  That moment...when you have to pull yourself away...is the hardest.

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?!?!

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.

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.

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!!!

Grrrr...

Another night of vomiting means another day in the hospital. Sophie vomited again...ugh!!! It just doesn't make sense. It is only once a day and it is right after dinner. At least this time it was not as much as the last 3 nights. Then again, we barely fed her today. Breaks my heart. She barely has any energy. She is still on IV liquids so she is getting what she needs but she wants to eat so bad.

Even though she is vomiting, we still started her on a liquid suspension of Depakote (Valporic Acid) that is given orally. She is getting 150mg 3x/day. The liquid suspension is absorbed much quicker than the Depakote sprinkle capsules. Plus we mix it with a bit of Sprite and she doesn't mind the taste. She gets it as soon as she wakes up in the morning, later in the afternoon and right before she goes to bed. So this dosing schedule does not interfere with her vomiting routine.

I am not sure what or when they will start the liquid suspension of Dilantin.

Brandon is taking the night shift (NaNaw took it last night) and I am off to bed.

Just that much better...

Painting with her RIGHT hand in the playroom. We do everything possible to get Sophie out of her hospital room as much as we can. Her favorite word right now is door. She loves her stroller and never wants to get out of it. She gets upset when we do take her out of it to get her to walk more.

Snuggling with Daddy while watching a movie. I was jealous. The bed is way too high and little for me to climb in...soon Sweet Sophie...soon Mommy will be able to snuggle with you in bed.

Riding a bike during physical therapy. Sophie cried and cried and cried during PT. Brandon thought maybe she was in pain but she wasn't fooling me. She did that same thing with her PT evaluation a few weeks ago. But we were both scared that she was going to vomit when she started coughing. So far so good...no vomiting and the gastroenterologist came by to check her out. They are going to put her on IV form of Zantac. We have given her very small bland meals with a few small snacks in between. Cross our fingers!!!

Despite all the fake crying, she did really well during PT. She is getting stronger and stronger everyday. She did even better with taking steps today. I think within a week or two she will be walking better than she did before surgery.

We also went for a walk outside today and had a late lunch in the courtyard. The fresh air feels good. We got Sophie out of her stroller and had her walk up to some flowers and bend her knees to touch them. She wasn't too happy about that.

It's about 5:30pm and she is sleeping peacefully. It has been a long day for her today. She woke up at 4am and by the time she fell back asleep at 7am, there was some VERY LOUD construction right underneath us that woke her up. She only took an hour nap this afternoon.

SEVEN MORNINGS OF NO SEIZURES!!!

SEVEN AFTERNOONS OF NO SEIZURES!!!

What goes down must come...

Up???? Sophie has been vomiting for the last 3 nights...EVERYTHING she has ate for the entire day.

Be forewarned...this post is not going to be pretty.

Sophie has vomited here and there after surgery. In small quantities. To be expected considering everything she was going through.

But once she became awake and alert, she has been wanting to eat. She gets excited when she sees food. She has started eating solid foods on Tuesday. And she has vomited every evening since then. To be graphic...we know it is everything from the day because of the quantity and because you can actually see what is in the vomit.

It is so frustrating. Her IV can't come out until she stops vomiting. We can't come home until her IV comes out. So each day she vomits, it's another day in the hospital. But she is clear to go from a neuro aspect. They do not believe her vomiting relates to anything neurological. So once she stops vomiting, we can be released.

Of course, in the big scheme of things, this is minor. I mean she is NOT HAVING SEIZURES.

Each morning, I wake up optimistic. Another morning without seizures. Sophie's worst cluster was always when she woke up in the morning. They would upset her. I had to be right by her side. They wore her out. I held her and comforted her until she felt better. That is how we USED to start our mornings. That's why I LOVE taking the night shift now. Because that means I get to wake up with her in the morning and see my beautiful girl wake up in peace. It's a wonderful way to start the day. I cannot even express in words what that does for my heart.

But then by the end of the day I am beat. Exhausted. Disappointed that she has vomited again.

To recap the day and to focus on the positive...

Today she had OT and PT. She is doing amazing. Getting stronger everyday. She took a lot of steps during PT with assistance for balance but she was doing a great job bearing weight on her legs. It takes a lot of energy and coordination for her to even take a step. She barely lifts her foot off the ground but she is doing it. It is coming along.

Brandon gave her a shower and she loved every second of it. She got very upset with me when I put the towel around her to take her out.

She loves her stroller and is constantly pointing at the door and saying "doooor". That is something new. Before she always said "doh" but now she has that "r" sound. I am sure if she could say "home" she would because I know that is where she wants to be. She is out of her bed for most of the day.

Brandon and NaNaw took her down to the playroom this afternoon. She had so much fun and did a great job sitting up and playing with toys. She sat for about 15 minutes straight without any assistance.

Later, Brandon and I took her for walk outside and she fell asleep in her stroller. The fresh air was rejuvenating for all of us.

Here are some pictures...

Spoiled Rotten...

I am overwhelmed with the love I have received over the past few weeks. Between the comments, e-mails, posts, phone calls, cards, packages, thoughts and prayers...I can not possibly put in words how much this means to all of us. Your support is what has gotten us through this when all our energy had been drained. It touches the most deepest part of my soul and I am forever grateful to you all.

Thank you Colin and Nicholas (Sophie's cousins) for the yummy cookies, muffins and brownies. Sorry Colin...but I don't think there will be any left for when you come visit us **smile**.

Thank you Shelia, Trevor and the rest of the clan for the package sent ALL THE WAY from Hawaii. Trevor had surgery here in Detroit a little over 10 years ago!!! We were introduced through Emma whose son, Alex, also had surgery here around the same time.

Sophie's get well crew...

Thank you Meghan, Tony and Jackson for the adorable Get Well Soon bear (on left). Jackson had surgery here in Detroit last September. We met Jackson while he was in recovery when Sophie was getting a round of testing done. Meghan has been a tremendous support in helping us understand what Sophie is going through.

Thank you Kat, Mark & Matthew for the cuddly purple bear and balloons. Mark is one of Brandon's co-worker.

Thank you Jake (Brandon's cousin but more like brother) for the snuggly bear (right) and balloons. When I have the energy I will have to do Hospital Owl and Hootie justice.

Thank you Zack (Sophie's cousin) for the yummy cookies. When Brandon brought them in and asked if we knew who they were from without reading the card, I immediately thought of you when I saw the dinosaur cookie.



Thank you Jennifer (a sweet friend of mine) for the delicious cupcakes. It may sound weird comparing a person to food but...they were just as adorable as you are.




Thank you, again, Kat, Mark and Matthew for the scrumptious cookies. You should have heard Sophie say "Bee" when she saw the arrangement. It put a smile on all our faces.