The 3rd time is NOT a charm*...

I have written several posts over the last few months. Never to be published. I have so much anger and sadness and guilt with this relapse. It's exhausting and consuming. So I'll update as quickly as possible and hopefully this one will be published.


We tried ACTH. It FAILED.


I was worried that with the wean of ACTH (actually we switched to Prednisone for the wean) that we would see a steady increase in her seizures. And, at first, we did. But once we got to a higher dose of Zonisamide, the intensity and number of seizures within a cluster started to decrease. She is still having around two clusters a day. Small clusters. Very mild clusters. But seizures they are. On a daily basis.

So we are still fighting. We have Vigabatrin in the waiting (just received the package yesterday) along with the ketogenic diet (our appt is in April). We just increased Zonisamide on Monday night so we will give that a chance and see what happens.

On a good note. Actually...a GREAT note. We have seen improvement with Sophie's behavior. There has been a lot going on with medications since surgery. After surgery, she was on Dilantin and Depakote. Since her latest relapse in seizures we have...weaned Dilantin, started and stopped Vimpat, reintroduced and weaned Dilantin, weaned Depakote, started and stopped ACTH, started and stopped Prednisone and started Zonisamide. So right now, she is only on Zonisamide. With all that said, I think Dilantin was making her aggressive. And I think Zonisamide is making her calmer. She has been playing independently. She LOVES her iPad. She has been singing a lot lately. She has become attached to a few possessions and seeks them out. I have never seen her do that before. She has a Dora doll with Boots in a pouch, a magic wand and a music box. She'll put all three items in this little shopping cart and push them around. Or she'll just want to hold them while watching TV. I think this is a huge developmental milestone.

And speaking of milestones...we had her IEP yesterday. I PROMISE to update very soon with all the progress she continues to make (despite having daily seizures).


*This was the third time we have tried ACTH. And this is the third time it has failed. I just knew it was going to work this time. And why not?!?! She has had the majority of her left hemisphere removed...including her left frontal lobe where all the seizures were originating from (according to the grids that were placed prior to the resection). So, I just knew that ACTH would be powerful enough to stop the seizures from this small remaining area that is still active with seizures. I mean...it was powerful enough to make her gain 6 pounds in less than two weeks, have her face puff up with dark circles under her eyes, have wicked mood swings including roid rage, suppress her immune system, lower her potassium level (she had to be put on a supplement) and so much more ugly stuff. All this for the small sum of $130,000 from a company that has HORRIBLE customer service (and I am just talking about this round of ACTH).

Quite the imagination?

I was decompressing somewhere in the house. Brandon was giving all the little kids a bath. Sophie was screaming her head off. Which is very UNusual for her. She loves bath time. She is constantly trying to find a way to take a bath or shower several times a day. But things have been off lately...ever since we started weaning the Dilantin.

I should of helped. But I was too tired. Besides, it was only a few minutes later that Brandon had Sophie out of the bath and wrapped into a towel. It was my turn to take over so he could finish up the other two still in the bath.

So I took her to her most favorite place in the house. My bed. Between the position of the room (in relation to the sun) and having the blinds closed, it is usually fairly dark in the room. It is a place I take her to several times a day when she is in sensory overload.

She immediately calmed down and smiled at me.

So I asked her... Why were you crying?

She replied... I was scared.

Scared of what?

A raccoon!

A raccoon?

Yes! It was at the front door.

It was at the front door?

It smell me.


At first, I thought...what book are they reading at school. Now I am wondering if it was a hallucination seizure. That thought just entered my head as I was typing this post. Maybe because I had just read this article.

An irresistible sharing moment

Here is one of Sophie's latest miracle moments...

As Sophie was sitting on the couch with one of her baby dolls, she had a two-sided conversation with her baby doll that went like this...


Sophie: Hi baby.

Sophie (talking for the baby): What is your name?

Sophie: Sophie. What is your name?

Sophie (talking for the baby): Baby.


I did not see it. But Brandon did. And I made him tell me the story over and over and over again. Sophie is going through another one of her developmental growth spurts. I wish I was on a reality TV show so that every little magical moment could be captured on film. Or maybe not, because with Sophie, every little magical moment comes with a not so...um...magical moment. Because as soon as Brandon turned his head to share the wonderful news, she decided to kick him where it hurts most on a male.

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...

A little bit of this...

And a little bit of that.

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

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


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


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


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


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

Extreme highs, extreme lows...

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

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

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


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

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.

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.