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 hospitals...insurance 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.

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 out...as 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 comment...it 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 her...it 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.

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.

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...

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.

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.

Bennett...

I write this post this morning with knots in my stomach and tears in my eyes. It is a very important day for a special little boy. Most of you that read this blog probably already know who Bennett is. But for those of you that don't...he is having BRAIN SURGERY today.

He is having a temporal lobectomy to hopefully stop his seizures AND to find out whether he has a brain tumor. As if waiting to find out if this surgery will stop his seizures is not enough, his parents will also have to wait on the pathology report to find out if their son has cancer.

Bennett...I love you with all my heart. I will be thinking about you all day today and for the days to come. Your smile could melt anyone's heart. You are a very precious little boy and you have many, many people thinking about you and praying for you today.

To follow his story, click here.

Elsa and Charlie...

Charlie is 5 weeks old. Already!!! Life has been crazy. Time has been flying by...though it doesn't feel like it around 6pm when Sophie and Elsa are having meltdowns.

Today, Charlie had his 1 month checkup with the pediatrician. He now weighs 10 pounds 14 ounces and is 22 1/2 inches long (both 75% on the charts). He is hitting all the milestones. While he is on his belly, he can turn his head from side to side and he can even lift it up for a few seconds. He is making great eye contact and likes to smile. Today, he even cooed for me. Melted my heart. He is also grasping for toys that hang over his head.

Elsa had her 18 month checkup. She now weighs 21 pounds 4 oz and is 31 inches long (my peanut). She not only hit all the 18 month milestones but also a lot of the 2 year milestones. She says over 100 words. She is putting 2 words together. She can count to 10. She runs...REALLY fast...to escape from Sophie. She is my mischievous little girl. She has eyes that are so expressive that she can get away with about anything. She pushes the limit. She imitates EVERYTHING Sophie does...especially right after I tell Sophie to stop doing what she is doing at the moment. She loves shoes. She will go into the closet and dig through a pile of shoes to find the exact pair that she wants to wear. She is almost potty-trained. She tries to do everything on her own and will have a complete meltdown if you even attempt to help her. She is mommy's little helper. If she sees a dirty diaper laying around (with 3 kids in diapers there is bound to be a dirty diaper laying around somewhere), she will pick it up and throw it away in the trashcan. When I am unloading the dishwasher, she stands on her stepstool to reach everything off the top rack so she can hand it to me. Speaking of stepstools, she carries one around to give her the boost she needs to climb up on about anything. She can do puzzles and shapesorters. She can twist the cap off of ANYTHING. She knows what belongs to everyone...points to an object and says "DaDa's" or "Sophie's". She LOVES Sophie and is very concerned about her. She forgives Sophie very easily when Sophie hits or bites her. If Sophie goes to time-out, Elsa gets a sad look on her face and will keep repeating "Soph, Soph, Soph" until I get her out. She has a huge heart, a contagious laugh and she absolutely cracks me up.

Sweet Voice...

Here are a few words that I was able to capture on video. It was right after she woke up and she was in a really good mood. A time, not that long ago, we would have instead been cuddled up on the couch because the seizure monster would have taken over. Sophie always woke up happy but it was only moments later that a cluster of seizures would wipe her out. That I would have to hold her in my arms until she regained her strength back to face the day. I cannot even begin to imagine what it must have felt like to start EVERY SINGLE DAY like that for OVER 3 YEARS. To have your brain in an electrical storm so bad that it takes over your entire body and drains all your energy. I treasure a lot of moments but now I especially treasure the moments right after she wakes up because they are no longer stolen from us.

Happy...

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

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

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

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

Baby Charlie...

It's only been 6 days but I can't imagine life without Charlie. I think he is going to be my laid back little boy...putting a little balance in a household full of high demanding girls. He has already watched many hours of baseball with Brandon.

Sophie is becoming more gentle with him. At first, she just wanted to poke, bite, hit or otherwise torture him. But she doesn't do it to be mean. She just doesn't know how to act around him.

Elsa, on the other hand, thinks he is her babydoll. She is so gentle, sweet and caring with him. She wants to hold him, feed him, kiss him and just help out in any way she can.

Even Haley has bonded with him. She chose to hang out with us at the hospital instead of going back home. She was with us when we decided to check out of the hospital a day early and wanted to sit in the back seat with him on the way home.

He just completes our family when I thought there was no more room to grow. It is going to be an exhausting and demanding few years. I am not quite sure if I am ready for the challenge and I am sure there will be days when I lay down at night and wonder how I got through the day. One day at a time.

Introducing...

Charles Henry Coleman II

"Charlie"
8 lbs 10 oz
21 inches
Born 9:47am
We are all doing absolutely wonderful!!!

Full Moon

The moon was full last night and the baby didn't feel like waiting until 7:30 for the inducement. He thought 3am would be a better start time so we should meet him very soon.

Happy Birthday NaNaw...

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

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

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

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

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

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

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

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

Brand vs Generic...

I know there has been a lot of discussion lately regarding brand name anti-epileptic drugs versus generic. I even had a conversation about this with our pharmacist. So I made the decision to have Sophie on the brand name Depakene and Dilantin.

But what I didn't know about our prescription drug insurance policy...

There are two lines in which a doctor can sign a prescription. One line states "substitution permitted" and the other states "dispense as written".

So even though our neurologist wrote the prescription for brand name Depakene and Dilantin, he signed the line that stated "substitution permitted". When I dropped off the prescription, I requested for there to be no substitution.

Doesn't sound like a big deal...until the price is given...$140.12 a month for brand name Depakene. So I called our insurance company to find out what our out-of-pocket maximum is for the year.

To only find out that if our neurologist had signed the line "dispense as written", it would only cost us $70.06 a month for brand name Depakene. A savings of $840.72 a year. So I kindly called our neurologist and requested that he send in a new prescription with it signed "dispense as written".

Considering all that Sophie has been through to get to where she is at now...this is the least I can do for her.

A new do...

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

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

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

All about Sophie...

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

Cognitively...

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

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

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

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

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Physically...

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

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

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

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

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

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

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

A smooth transition...

We are so incredibly grateful and thankful for everyone who made us dinner, came to visit, called to check in on us, sent an e-mail or posted a comment since we have been home. When we were leaving the hospital, I was incredibly scared to be at home alone with Sophie and Elsa. I didn't know if I would have to energy to do it. But with everyone's support, our first week home went incredibly well. So well, that Brandon said I was being very spoiled. Which was so true. As the days go on and the more stable Sophie becomes, the easier it is getting.

Thank you Teresa (our neighbor across the street) for bringing us dinner. Thank you Robert (Brandon's boss) and his wife, Kelli, for bringing us dinner and keeping us company...we enjoyed the beautiful evening with you and your little girl, Mariella. Thank you Kelly (a neighbor that lives down the street) for bringing us several dinners to stock our freezer for when the new baby comes.

So THANK YOU all for your support.

All about preschool...

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

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

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

These moments...

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

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

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

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

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

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