Thursday, November 19, 2009

We're home.

And all I have the energy to say right now is...

Can it really be this exhausting??? I am emotionally and physically drained.

Sunday, November 15, 2009

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.

Tuesday, November 03, 2009

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.

Monday, October 26, 2009

Why is this still happening?

Quinn never made it to the hospital today because her parent's insurance has yet to approve the treatment of ACTH.

I am speechless.


At how a child could be sitting at home suffering with seizures without treatment in hand because of insurance issues.

Because Questor decided to charge over $25,000 per vial for ACTH. In which it takes an average of 5 vials per treatment. Yes, that is right. It will cost over $125,000 for a treatment that is not even guaranteed to work. A treatment that only a few years ago cost around $12,000 in TOTAL.

So please click here and show this family your support. I am sure they could probably use it right about now

And to read more about how Questor keeps parents and caregivers waiting on the edge of their seat to find out if ACTH will be their child's miracle drug click here.

Wednesday, October 21, 2009

More on our 24 hour video EEG...

The hookup was horrible. She was crying so hard that she was making herself gag. Not that the EEG tech wasn't great, it is just that Sophie is now very sensitive to anyone touching her head. Can't blame the girl.

Once she was hooked up, she did surprisingly well. She had my and Brandon's full attention. And the attention of any visitor or doctor that came into the room. There was this one doctor, in his fellowship, that came by to get familiar with Sophie's history. She was standing on the bed and he was standing in front of her. She put her arms in the air and kept saying up. So he would lift her up high in the air. Over and over and over again. He was an average size guy and I am sure he was getting tired of lifting all 38 pounds of her over his head. But he obliged until finally I grabbed her so he could make a quick exit.

Around 9pm, Brandon went home for the night. And Sophie and I snuggled up in bed for the night. She slept very well. But by the morning, she was ready to get out of there. I think 24 hours is her limit.

Here are a few video clips...

Monday, October 19, 2009

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.

Wednesday, October 14, 2009

Yet another EEG...

The med game continues. Except we are on the other side. Before we were always trying to find the right combo to stop the seizures. Now we are trying to find the right dose to make sure they don't come back. Trust me...I realize what side I want to be on. But the thought of a 24 video EEG has my stomach all in knots. Especially dealing with all of Sophie's behavioral issues. So I am nervous about her getting hooked up...tomorrow morning at our local children's hospital.

After the grid surgery, Sophie was put on Dilantin and Depakote. We had issues getting her levels up while we were in the hospital. They did quite a few boluses. They eventually got the levels up to the lower end of the therapeutic range. We got her blood drawn two months after surgery. They were really low. Dilantin was 1.3 (therapeutic range is between 10 - 20). Depakote was 26 (therapeutic range is between 50 - 100). So I e-mailed Dr. Chugani and he suggested we increase the Depakote and check levels again in six weeks. So we did. Dilantin stayed the same and Depakote increased a measly 4 points. So I e-mailed Dr. Chugani again and he suggested that Sophie get a 24 hour video EEG before making any more med changes.

I know it is only one night in the hospital. Seems like nothing compared to brain surgery. But I am still stressed. I not only have to think about myself and Sophie but there is also Elsa and Charlie. I am also anxious to see what her EEG is going to look like. Is it too much to hope for a clean EEG? She has never had a clean EEG. They were always constantly chaotic. I do not even know if it is possible to have a clean EEG after getting almost half her brain removed.

By the way, if anyone in the area wants to come by and say hi, give us a call on our cellphones.

Tuesday, October 13, 2009

Pumpkin Patch...

It was a gorgeous day and a spur of the moment decision. I am so glad we went.

Sophie and Elsa both had swim lessons that morning. Haley had dance practice. Afterwards, we all headed over to the toy store to pick out some birthday presents for Sophie and out to lunch. Once we got home, Sophie was unbearable. Moody, crabby, clingy, mischievous...just exhausting. We were already exhausted. It would have been nice to just come home and chill out for a few minutes. But with Sophie, she is always on the go. So we loaded all the kids up in the car and headed off to the local pumpkin patch. And we had a blast. For the first time, Sophie was...hmmm trying to find the right word...manageable. She was not doing her normal out of control behavior things like rolling around on the ground or grabbing at strangers or trying to stick her fingers in other kid's mouths. By the way, gotta love the chewy tube.

We have moments like this...where Sophie is manageable. They are few and far between. But when we get them...ahhhhh...I just soak them up.


Please share any thoughts on whether to get the H1N1 vaccine and whether it matters if it is the nasal mist or shot. Thanks.

Sunday, October 11, 2009

Happy 4th Birthday...

Four years ago today, at 1:13pm, my sweet Charlotte Sophia was born. She was named Charlotte after Brandon's father. I was due on his birthday...what are the odds??? She was nicknamed Sophie by her big sister, Haley, and the name has stuck ever since.

It has been an incredible four years. It has had more twist and turns than I ever could have imagined.

She is an amazing little girl. With more strength and determination than I could ever muster up. Trust me...she has tested it out on me many times and won!!!

I love her with all of my heart. Her smile lights up my world. Her meltdowns crush me.

It is hard parenting a special needs child. Harder than I could ever imagine. But the rewards are greater than I could have ever dreamt of.

She continues to make strides developmentally. She gallops everywhere she goes. So adorable. She could only be going 5 feet but she will gallop to get there. It's fun for her. Something new.

Her new words are "air conditioner" and "watching you". After her surgery, sudden noises would scare her. The sound of the air conditioner coming on or the toilet flushing or the very faint beep at the end of the cycle on the washer or the automatic ice machine in the refrigerator. When she hears these noises, she gets a panic look on her face and jumps into the closest lap. It is getting better, as she is starting to understand what these noises are.

She will repeat a lot of words you ask her to except "I want" or "more ____". I will start going through the list of words she knows and she will repeat them. Does not hesitate. And then I ask her to say "I want". Complete silence. Does not even attempt to say it. I will even try to break it down by asking her to repeat just "I" or "want" by itself...refuses. But she has spontaneously put two separate words together. She does say two word combos like "air conditioner" or "watching you" or "thank you" or "all done". But these words are always said together. So what I am referring to is two separate words that make sense but not something I always say together. Like "mommy happy". I have no idea where she got that from. Just said it to me one day. She also said "I good" after getting in trouble at school one day. These are HUGE breakthroughs. I am so proud of her. I have no doubt that her language will continue to get stronger with time.

I love you my sweet baby girl. Happy 4th Birthday.

Tuesday, October 06, 2009

Charles Henry Coleman, The Original

Charles Henry Coleman II, turned 3 months old today. This is also the birthday of my (Brandon) father who passed away on September 4, 2001. He has been gone for over 8 years, which was 24 years longer than was expected. Shortly after my brother and I were born, my father was told that he had developed a rare form of cancer for his age or any age and that the survival rate was very low. I think often, not necessarily about the sadness of missing him (although that feeling will always be present) but rather about how different my life would have been if he wouldn't have fought and survived...what it would have been like without being raised by the greatest man I ever knew and will ever know. I never talk about him, with anyone really. As I just wrote that, I am not sure why. This year I didn't realize that I forgot about the anniversary of his passing until the day after...and I think he would have wanted it that way. He would have wanted us to remember all of the good years, which is what he told us when we sat by his side a month before he passed away. He told us that he was so blessed for the "extra" years he gained.

I started this post above yesterday and still can't think of what to say. I read father's day cards that I wrote, a paper from 5th grade on who I most admire, letters to him when I was away at 8th grade camp, and some poem I wrote him with what appears to be a calligraphy pen and flower decals (is it possible that I am gay?...not that there is anything wrong with that). Although it was good reflection and tears, it did not lead to any inspiration in what to write. Or it did and I still choose to keep those feelings to myself.

So, I will keep it short. I can see my father already in Charlie. He is the perfect completion to the family. Charlie, you have a big name to live up to and I can't wait to tell you all about him. Love you dad.


Monday, October 05, 2009

Trevor's Hope

I can't quite find the words right now. I am emotionally drained. But if you are following my story then I don't need to tell you how big of a day it is tomorrow for Trevy and his family.

Trevy is in Detroit. He is having the two-part brain surgery.

Please keep him and his family in your thoughts and prayers.

Thursday, September 24, 2009

Infantile Spasms Awareness...

Reposted with permission from Danielle...the super sexy, awe-inspiring, soon to join the "my son had brain surgery" group mom that advocates with all her heart on behalf of Infantile Spasms and her most adorable son, Trevor.

on raising awareness

Once upon a time...

In a land far away...

Where seizures were in remission and life was not so draining. There lived a mommy with fight in her heart. This mommy...together with her family...made a very special journey. At the request of a very important woman...who also hosts the heart of an advocate. That was how it came to be that the mommy testified on Capitol Hill against the tyrant Questcor...and their criminal abuse of the Orphan Drug Act.

See, a few months prior to the mommy's son being ensnared by the Seizure Monster...Questcor amplified the price of their drug. The front line drug. The drug indicated in the rescuing of her infant son from the Beast. Acthar gel. Over the course of a handful of days...Acthar's price point was increased from approximately $1200 a vial to $25,000 a vial. And it did not halt there. Today it can cost upwards of 30k per 5 ml vial. Most infants require a course of at least 4 vials.

Suddenly the mommy...seizure saturated son in her arms...was thrust fully into the war that rages between companies...drug corporations...and families holding broken children. Her insurance company initially denied coverage. The saga was intense for nearly a week as her son's neurologist went to battle beside her...writing scathing letters on behalf of the seizing baby boy.

In the end...they won that battle. And her son received treatment. Which helped for a time. But despite a price tag which could buy a decent family home even here in New England...Acthar is not a cure. Although it is one of the very very slim "chances" our babies of Infantile Spasms have to escape the Monster. If even for a time.

Which the mommy's son did. He was Seizure Free for a much too short spell. But the rage against the price-gouging tyrant did not lessen after the battle was won. It intensified. Posts were written. A few press corp attempted to tip the scales of right versus wrong. Capital Hill testimonies before Joint Economic Committees were passionately delivered. Interviews for books and even prominent televised news programs were given...although sadly most of those fell by the way side. Because, I suppose, she had no relation to Hollywood. But the mommy...whose advocate blood runs deep...continued to work together with other parents to increase awareness. To buck the system. To be the squeaky wheel and be heard.

But then on a different devastating day the seizure free time ran out. And day to day life became so altogether draining that the mommy had no energy left for advocating. It was all used up caring for her son. Who although injected with over a quarter of a million dollars worth of Acthar was not cured. But rather assaulted by 100s of seizures daily yet again. Because although I have shared this narrative in the framework of a fairy tale. It is anything but. And two weeks from this very day my beautiful little boy will be lying in a hospital bed. Wires protruding from his cranium. Connected to the Beast inside his skull. While we anxiously wait for the dawn of the following day. When doctors will preform what is closest to a real cure for seizures that we have at this time in history. Radical brain surgery. The removal of most of my little boy's left hemisphere. And pray to God...the Seizure Monster with it.

Quite possibly for a cost less than that of the Acthar gel with which he was injected. And proved not to be a cure. Though it may cost the same.

How ironic that Questcor...along with the Child Neurology Foundation...would be hosting an Infantile Spasms Awareness Week during the very month that Trevor (whose mommy once testified before the JEC against the tyrant Questcor) will be wheeled into a surgical room. Where the Seizure Monster their drug could not cure will be removed at last.

Also ironic that Don Bailey, CEO Questcor, with whom I have shared dialogue via email a time or two would not make me "aware" of their attempt at increasing awareness. Nor any other advocate parents with whom I am connected. In fact, I know of at least one parent who contacted Questcor in hopes of gaining an agenda for when this proposed awareness would be taking place...only to be directed to the Child Neurology Foundation. Who really had no clear answer.

Speaking of which...while monitoring my sitemeter I noticed someone from CNF spent hours combing my site. My silly hopeful heart. She actually entertained the thought that I'd shortly receive an email. And yet there has been no olive branch offered from that direction either.

Which leaves me wondering why?

Why would you not reach out to the parents whom you are cognizant have a passionate desire to increase awareness?

Perhaps it is not at all about increasing awareness? And I have no doubt my suggestion would not be remotely appreciated.

I certainly agree with Marissa's Dad that increasing awareness would best happen among those not already intimate with the disease. The pediatricians for instance. The educators who think every seizure is a grand mal. And such. Yet it is our understanding that this so-called IS Awareness Week will take place amongst neurologists. Whom I dare-say should have a solid level of awareness already. Which no doubt will be divulged over platters of fruit and cheese.

Which brings me to my own suggestion?

If Questcor (who makes very ambitious claims regarding the efficacy of their Acthar gel) truly stands behind their drug as a cure? If they truly boast a deep seeded desire to provide awareness for the families suffering this very rare and unknown disease.

I think an ingenious way to create a buzz would be to do something truly dramatic. Truly generous. Truly grounded in the belief that their drug is more than effective...but rather a cure...80% of the time.

I submit to you...short of decreasing the cost of their drug to bring it more in-line with other rare disease treatments...

Why not offer a reimbursement program to those who trial their drug and find it not to be a cure after all?

If Acthar fails - Questcor will reimburse

It's not a super sexy slogan. May I remind you that my creative energy levels are running on fumes as I prepare for my son to endure radical brain surgery.

Call me crazy, but I do believe that would generate some awareness.

Tuesday, September 22, 2009

Turning the corner...

...And there is a big wide open field. No wall. Sophie's behavioral issues are getting better and we have seen a spurt in her development. Especially this weekend.

So as the weekend unfolded and the blogworthy news kept building, I knew I just had to take the time to sit down and type it quickly as possible because the clock just ticks way too fast during the day.

It all started Saturday morning. I was watching Sophie from the sidelines in her second swim lesson. The instructor, Sara, put a floating device around Sophie's waist and got her into the water. As Sara was holding Sophie, she told her to hold on to the edge of the pool and then she let go of her. And she held on!!! Just like that. She understood. In that moment, she looked so old. So...dare I say...typical. Just a 3 year old, holding on to the edge of the pool, chilling out. By the way, I will definitely remember my camera next week.

But it didn't stop there. She told Sophie to close her eyes. She did. Squeezed them so tightly together...too cute. She told Sophie to put her nose in the water. She did. She told Sophie to kick her legs. She did.

I was so proud of her that I had to fight back the tears!!!

Then came dinner time. Brandon went to the baseball game so it was just me, Sophie, Elsa, Charlie and Grandma Debbie (aka NaNaw). We decided to be brave and go out to dinner. Taking Elsa and Charlie...easy. But when you add Sophie to the mix...well nothing short of EXHAUSTING. But we were up for the challenge.

And Sophie did great. The I'm so proud, I could cry moment was when she dipped a piece of fish in tartar sauce. First of all, she requested dip by saying "dip, dip, dip". She learned that from Elsa. Elsa LOVES dip and will eat almost anything if you dip it in something. But it wasn't the requesting as much as the action. It was such a controlled and purposeful movement. She delicately dipped the edge of a piece of fish and then popped it into her mouth. In that moment, she looked so...typical (I don't like using that word but I don't know how else to describe it). Not that she looks so typical to the outside world...sitting in a highchair that looks way too small for her while obsessively blowing raspberries in the air and of course her very cute do*.

*Once, a waitress took one look at Sophie and made the looks like someone got a hold of the scissors.

There is more...

Late Sunday morning, Sophie said "dough dough" out of the blue. So I said, if you want to get a doughnut, you have to put your shoes on**. Getting a doughnut is a treat in our house. Occasionally, we will take the kids to the doughnut shop and go to the park. So she walked out of the family room, through the kitchen and grabbed a shoe out of the back closet and brought it to me. Usually, Sophie gets distracted in these situations and never quite makes it to where she initially plans on going. So for her to make it somewhere AND come back is huge. Most of the time, I continuously verbally redirect her or hold her hand in order to get her to follow through. And half the time, this doesn't even work because she will have a meltdown in the midst of it all. This time, there was no redirecting her since I really did not feel like taking was raining outside and she just finished eating a big breakfast. But I was too proud of her to not follow through. Well...actually...Brandon took both her and Elsa.

**She hates wearing her shoes. You can't blame her. Who wants to wear hard plastic orthotics all day long. Just not comfy. But necessary.

There were more of these moments. I just can't think right now. All in all, it was a refreshing weekend. Something I have been longing for. And it could not have come at a better time. With all that was going on with Julia this weekend. I hope this good news gives this family hope. That Julia's surgery will be a success. That her parents will soon be blogging about their I'm so proud, I could cry moments. Please keep this family in your thoughts as Julia is in her last few moments of surgery.

Nothing but love, hugs and warm thoughts sent to you...sweet Julia.

Tuesday, September 15, 2009

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.

Monday, September 14, 2009

Sweet Julia...

Through the wonderful world of the internet, the paths of so many journeys are crossed. This time it is the journey of sweet little Julia. I met her mother, Lisa, about a month ago. She stumbled upon my blog through a link on Ken's blog, Blogzilly. Julia is scheduled for the two part brain surgery that is very similar to Sophie's. The grid surgery is scheduled for September 18th and the resection surgery is scheduled for September 22nd at Children's Hospital of Michigan with Dr. Chugani's team.

My thoughts go out to this family as I know all too well the emotions they must be going through right now. Please keep them in your thoughts and prayers.

You can follow their story on their blog page Daniel and Julia.

The adorable little Julia...

Thursday, September 10, 2009

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 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.

Thursday, September 03, 2009

A quickie...

I am taking the approach that a quick post is better than no post at all. Sophie remains seizure free. I write it so matter-of-factly but I truly want to scream it for the world to hear...especially to those doctors that said she would not be a surgical candidate.

August 30th marked her 3 month seizure free anniversary. One that I am too scared to celebrate. Too scared to get too comfortable.

Sophie started school 3 weeks ago. She goes full day Monday through Thursday. That is a whole different post that I will hopefully write about soon (among many other topics). In the meantime, here are some random pictures...

No...not another EEG.
I had to wrap her head at night to stop her from picking at her suture site. She would pick and pick and pick which caused it to bleed and bleed and bleed. For weeks on end, Sophie slept in-between us with one of us semi-sleeping so we could stop her from picking. Because even with this nice looking head-wrap, she was still able to get to it. It is finally almost healed.

First day of preschool. This was the best picture I could find. She was in a daze when I started snapping away.

First day riding the bus (3 days after school started). She rides the bus to school and then I pick her up after school. She is the last stop and the school is only a mile away so she is only on it for 5 minutes...the guilty part of me felt the need to say that. She cried the first day or two but she happily gets on the bus now.

Elsa's first day of preschool. And yes...this is also the best picture I could find. Why are my kids in such a daze on their first day of school once I get the camera out???

Sophie getting a much needed sensory fix. She loves to rub her inner arm up and down stubbly chins. She will actually go up to a complete stranger and do this.