Medical Maze

If Evan Could Change One Thing...

2012-01-17T22:48:00.001-05:00

Tonight at dinner the kids were talking about their lives and Aria said, "I'm pretty happy with my life and there is very little I could change to make it better, very little!"

Then Evan said, "Me too. If I could change one thing to make my life better..." I'm thinking he'll say Pokemon cards, DS games, iPod, etc. and then he looks at me and says, "and maybe you can help with this mom. The one thing that would make my life better is no more seizures."

That one little sentence shows the irony of the lives we are living. Evan trusts us and believes in us and our ability to fix the problems in his life and yet if this is his one wish, we let him down every time.

When he was little I used to think it would be easier when he'd be able to talk about his seizures and what it's like to live with epilepsy but I was wrong. Being more informed is better in many ways, but never easier.

Christmas begins with a Seizure

2011-12-27T14:54:00.001-05:00

It's almost predictable in the epilepsy world to begin Christmas with a seizure. I don't know if it's the excitement leading up to Christmas morning or simply Murphy' Law rearing its ugly head.

It's not the first year things have gone this way for us and I know of a lot of families dealing with seizures on Christmas. The lucky ones don't call 911 or visit an ER. It puts a unique twist on how the morning and the rest if the day goes.

For our family there were no 911 calls and for this we are thankful. Evan was groggy and seemed to be going through the motions as he opened his gifts until he opened Pokemon cards and Beyblades of course. By the afternoon he was back to being his normal cheerful self and loved going to the Chinese restaurant for Dim Sum.

We have so much to be thankful for and we say this everyday. Maybe Santa will do better with my single wish next year.

Seizures are Serious

2011-10-19T20:42:00.001-04:00

Last night we were talking with Evan and out of the blue he brought up one of the more serious impacts of epilepsy. He said, "I know seizures are pretty serious and sometimes people die from a seizure...but it's very unlikely that would happen to a child, right?"

Rob and I exchanged glances not knowing exactly what to say. Do we tell him that children do die from seizures? Do we say that we just heard of a 6-year-old child who was taken from this world too soon? Do we confess that this is our biggest fear? No, that reality is too cruel and too hard to comprehend at his age. Instead we nodded reassuringly.

That conversation hung with me all night. I'm not ready to have a conversation with Evan about his mortality and I don't think he is either. I know our choice to avoid this conversation is right for the moment but I also know we need to figure out how to tackle this tough topic.

Then at a little after 11:00 we heard Evan kick the wall and make a strange noise. We rushed onto his room to find him having a seizure. We gave him the medication to stop the seizure and waited...6 minutes. Too long but not as long as the last one. I couldn't help thinking about his comment earlier in the evening and that we were once again spared from my biggest fear.

New Member of the Family Coming Soon!

2011-07-10T21:13:00.002-04:00

Now that I have your attention, I am NOT pregnant! Evan has been approved to receive a service dog that will be trained as a Seizure Assistance Dog. It will probably be roughly a year before this all happens but we are very excited about it.

The first thing we have to do is fulfill a fundraising commitment to 4 Paws for Ability who will train a dog specifically for Evan. We will be raising $13,000 and have just begun this endeavor.

If you want to keep us with our progress, we have a blog set up and you can sign up to get email updates as well:

www.dog4evan.com

I know that this marks the beginning of a new chapter and we are all very excited about it!

Who is Evan?

2011-06-30T10:27:00.002-04:00

If I had to use one word to describe Evan, I’d choose comedian. He loves to tell jokes and make people laugh and his comedic timing is beyond his age. He is also charming, sensitive, thoughtful, active, smart and extremely social. He loves Pokémon, riding his bicycle, playing video games and reading. He adores his older sister and the two have a very close relationship.

Evan’s doctors, therapists and teachers use different words to describe him: Tuberous Sclerosis, Epilepsy, Retractable Seizures, Cortical Tubers, Angiomyolipmoma, hypomelanotic macules, Processing Disorder, Hemiperesis, Increased Tone, Pronation...

Both descriptions are correct but we strive to provide an upbringing for Evan that will not define him by his disorders. We are well aware of how they impact him on a daily basis, but he is so much more than the sum of his challenges.

"Only" 5 Minutes

2011-04-11T22:09:00.003-04:00

This morning Evan had a seizure and I was on my own because Rob is at the American Academy of Neurology conference. It was not really that big of a deal that I was alone because we've done this so many times, but I know Rob felt guilty for being away. He shouldn't because there is nothing that he could have done to change the events if he were here, but I guess that's just part of being a parent -- a really good parent.

I talked to Rob after the seizure had stopped and Evan was sleeping peacefully. Later I thought about how odd our conversation had been. The seizure "only" lasted about 5 min and I gave "just" one dose of rescue meds to stop the seizure. It has been 17 days since his last seizure and we commented on how great that was too. None of this is good, in fact, it's pretty bad. Yes, it's an improvement and we're happy to see that but this is not a good situation.

I hate the feeling of chasing after the illusive ideal of seizure freedom. I hate epilepsy and all the challenges and restrictions it brings to my family. I am fearful of what it will do to Evan if we can't get in front of the seizures and the effects it will have on Aria as she watches from the sidelines.

I got Aria off to school and then waited quietly for Evan to wake up. When he did he was feeling great. He was in a cheerful, talkative mood and went to school at 10:00. When I dropped him off he was chatting dramatically with the school secretary as she escorted him to class. He told me when he shows up late to school after having a seizure everyone is happy to see him and shouts, "Evan's Here!"

The Toughest Question

2010-12-14T21:19:00.004-05:00

When I thought about the hard questions my kids would ask growing up, I figured the tough ones would be about where babies come from, if Santa is real, relationships and questions of my own experiences as I entered adulthood. I've already dabbled with answering the first two. I know there will be more questions that will test me, but I kindof know they are coming and in some small way I'm expecting them, ready or not. My approach has always been to be honest and give them small pieces of information until they are satisfied with the response.

Tonight as I was helping Evan get ready for bed, he caught me off guard. He looked up at me and asked in his sweet 7-year-old voice, "Mommy, do you think I'll have another seizure?" It felt like a kick in the stomach. I'm glad he's old enough to talk about his epilepsy and how it impacts him but it also means he's aware enough of the seizures to initiate a conversation. I smiled weakly and said, "I hope not" to which he responded, "I hope not too." He said he hoped he didn't have one on Christmas or Christmas Eve. I told him about the seizure he had last year on Christmas Eve and how he woke up in the morning, opened presents and had a great day, just as if it had never happened. I assured him that if he had a seizure we'd take care of him and he'd probably feel fine my morning and he seemed to agree with that.

This conversation was spurred by a seizure Evan had early this morning. It was only 3:30 am and it lasted 15-16 minutes. We gave him the rescue medication we keep by our bedside and after 5 minutes when the seizure wasn't stopping we gave him another dose and called 911. By the time the EMTs walked into the house Evan's seizure was ending. We didn't go to the hospital, but this is the longest one he's ever had. Evan always goes back to sleep and wakes up at the normal time for school, often not remembering having had a seizure. But he remembered this one -- I guess it makes more of an impression when a bunch of paramedics arrive at the house.

As the sedative effect of the medication took hold, Evan told them with his eyes closed that if he was going to ride in the ambulance, he wanted to go to the hospital in New York. We all chuckled and I thought, yep, that's Evan, even as he drifts off to sleep he's cracking jokes.

I'm sure there are more tough questions to come on this topic, but in some small way I'm expecting them, ready or not.

One Less Dose!

2010-11-28T22:05:00.003-05:00

Too many meds...

Evan seems to be having a slight medication interaction again. We increased one of his meds and it interacted with his Trileptal and he started having double vision. I'm so glad he is old enough to tell us what's going on. As a result of this new development we have pulled his 4pm dose of Trileptal and we are now down to giving Evan medication four times a day! Time to change the chart!

Happy Thanksgiving!

2010-11-25T20:41:00.002-05:00

Thanksgiving is always a sentimental time for me and in addition to reflecting on the things I am thankful for over the past year I always remember what November represents to my family.

November is National Epilepsy Awareness month, this year was Rob's 40th birthday and Evan's 7th birthday and it is the 3 year anniversary of Evan's brain surgery and the launch of SeizureTracker.com.

We are currently struggling with seizures again but nothing like what Evan was experiencing 3 years ago. We are thankful that Evan has come so far and is the person he is. His character is strong and he never ceases to amaze me. In his "Thankful Book" that he made in school he said he was thankful for Aria for being the best sister -- Rob and I were left out but I think it was implied!

I am so thankful for the relationship Aria and Evan have -- it is what I imagined having a sibling would be like, growing up as an only child. They played board games together for hours this morning and it was a simple joy to watch them and then join in for a crazy game of Bingo! My children bring so much joy and laughter into the house and I feel so fortunate to have them in my life. Rob completes the picture and is my constant companion and best friend. With this crew on my side I know I can handle whatever life throws at me but I'm hoping for some easy pitches for a change!

Happy Thanksgiving!

Why is Evan Having Seizures?

2010-11-21T22:15:00.003-05:00

Last week we talked to Evan's neurologist about all kind of things. We only want to know two things:

Why is Evan having seizures?
How can we make them stop?

Unfortunately these are the two hardest questions to answer and there are no easy answers to either question.

Evan's on a lot of medication and is currently taking three meds that are spread out over five doses each day and just to keep us on our toes, no two doses are the same. He takes 19 1/2 pills every day. Some of them he just chews up and others we crush and mix with something to minimize the bitter taste. What's interesting is that when we talked to his doctor she told us that she got the results from his recent blood work and he is hypermetabolic and none of the medications are at a therapeutic dose for him (although with the amount he's taking, they should be). For some reason his body is processing all this medication so quickly that it isn't staying in his bloodstream long enough to be considered therapeutic. This is common with kids and can make treatment challenging to say the least.

Evan had another seizure this morning and we began an aggressive increase of medication to try to stop the seizures which are still happening every 7-14 days. On the up side there is hope because maybe he just needs a significantly higher dose to get things under control, but we've been down this path before with seizures that medication couldn't touch, so we are nervous about their effectiveness.

As for Evan, he is so strong...he had a seizure at 7am that lasted 7-8 min, we gave him an emergency medication to stop it (the amount would probably knock out an adult for several hours), he cat napped for 45 min. and was ready to go. He was a little off-balance and his speech was slurred for a half hour, but that didn't slow him down. At 1pm I took him to a birthday party at a Kiddie Gym and he ran around, climbed all over the equipment and finished it off with a ride on the zipline and a slice of cake. Life is good.

Update...

2010-10-22T22:25:00.002-04:00

We seem to have the bus situation worked out so we're not having an irate Evan every day when we pick him up. He's so perceptive, even at six years old, that he immediately recognizes when he is being treated differently. Clearly, this will be our challenge. There are certain times when Evan needs special accomodations that result in him being treated differently and it's a tough situation to navigate...

He gets picked up early from school every Wednesday for PT and feels special because he gets to walk to the front of the school with two buddies.

He is selected for a pull out session for advanced academics and is furious that he has to leave his classroom.

Loves his private physical therapist; HATES the adaptive PE instructor and told him as much.

It doesn't help that Evan is also on a medication that is known to cause extreme irritability and aggression. We can sometimes see that he is trying to manage the chemical change but when he loses it (usually emotional tears rather than aggression) I have to just take a deep breath and choose my words carefully.

umm...discrimination?

2010-09-17T18:31:00.005-04:00

Today Evan got off the bus teary-eyed because, although he didn't have the words for it, he was a victim of discrimination. Not by some mean kid, but by the transportation department of the school system. They didn't say he couldn't ride the bus...they know that's illegal and would never do such a thing.

But they did single him out because he has epilepsy and insist that he ride sitting by the window and next to an adult who has been assigned to him. It took Evan two weeks to bring this up to us but apparently after today he couldn't take it anymore. All Evan wants is to be able to sit wherever he wants on the bus and with his friends. All Evan wants is to be treated like everyone else. Seems a simple enough request.

My guess is the the transportation department just wants to keep Evan safe. Unfortunately, by making him sit next to an adult they have singled him out as being different in a situation where it was unnecessary. My expectation is that next week the "assigned adult" will sit in a different seat where he can be close enough to see Evan.

Friday afternoons are not productive for dealing with such issues so I'll detract my claws and wait until Monday, however, my manicure is already scheduled for Sunday.

Sigh...

2010-08-27T21:38:00.003-04:00

Anyone who knows me, knows I am pretty much always able to put a positive spin on things. I can turn any comment into a compliment and am generally a pretty positive person. It's a gift and a curse.

Right now I'm struggling with that very thing. In the last two weeks, Evan has had two seizures that have lasted over 10 min. The scary thing is that each seizure he has is longer than the one before. Just to give a little context: A seizure that lasts over 5 min. is considered dangerous and the concern of brain damage increases with the length of the seizure. Evan is having cluster seizures (lots of little seizures a couple seconds apart) so his brain isn't constantly seizing during the full seizure. We were told not to worry unless they reach 10 min. That was several weeks ago when they were only 5 min. long. Tsk, ONLY 5 min. long seizures -- I never thought I'd write that!

Every seizure requires us to give him a rescue drug to try to make it stop and they are happening in the wee hours of the morning in his sleep. Unfortunately they are also happening while we are asleep so we have taken to having him sleep in our bed so we'll wake up. The up side: we have a glorious new king sized bed... however, I'd share a twin bed with Rob for a lifetime if we never had to deal with this again.

Sleep, I've learned, is over-rated and craziness is something to embrace.

How does Evan feel about all this? In a word: unaffected. He wakes up in the morning, gets out of bed and acts exactly the same as he does on the days he doesn't have a seizure. Sometimes his balance is a little off but that's about it. Sometimes he remembers it, sometimes he doesn't. We talk about it at breakfast and go about our routine. I suppose this is the bright side I should cling to, that Evan handles it better than us.

I just looked at him, sprawled across or bed, somehow managing to fit across the whole king and I am reminded how lucky we are. Two great kids who fill our home with love and laughter...it makes a mom proud!

Insert Expletive Here

2010-08-05T22:28:00.002-04:00

We got home last night after several days of EEG monitoring and some medication adjusting and everything seemed to be going well. Evan's EEG was calm and I was hopeful we finally had a solid dose of meds to keep the seizures at bay.

This morning at 5:30 Evan had another seizure. (big sigh)

So tonight we upped his Keppra. Again. We have seen some improvement with this drug and as we've increased it, we've seen his seizure activity go from once a week to once every two weeks and most recently 2 1/2 weeks between seizures. Our fingers are crossed that with this increase we will have seizure control.

Freedom!

2010-08-04T14:54:00.005-04:00

After four days of video EEG monitoring, we are going home! Evan's EEG was pretty clean witch is good and we are beginning the process of reducing his Trileptal. This is the last meal in the hospital after Evan had the EEG leads removed -- true bliss for the kids: chicken tenders, chocolate pudding with graham crackers to dunk, ice cream and to top it all off, watching TV while eating! Evan told the med student that he liked it there and wanted to stay 70 more weeks, to which the med student replied, "We'll leave at the same time!"

After leaving the hospital we went back to the Ronald McDonald House and after grabbing a quick bite to eat joined a House trip to Central Park Zoo. They shuttled all of us there and we enjoyed a private party at the zoo complete with ice cream. They fed the sea lions and put on a little show and then all the kids got to take a turn feeding them too! It was a great evening and a perfect way to end our stay in NY!

We are on our way back today and I think we're all ready to be home. We are keeping up with the tradition of leaving NYC seizure-free and are hoping to keep it that way!

NYU Hospital: Art Therapy

2010-08-02T13:33:00.009-04:00

This is the most common scene in our room and it's not easy to tear them away from their DS games...

Unless it's for art therapy!

NYU Hospital: Day 1

2010-07-31T22:09:00.012-04:00

Today we checked into NYU Hospital for several days of video EEG (VEEG) monitoring. Hopefully we'll get a better handle on the increased seizures Evan's been having. We are also hoping to reduce Evan's meds. He currently gets medication six times a day and is taking way too many pills every day:

Evan was not happy about having the EEG leads glued to his head but getting unlimited time to play his DS is a plus. We think he looks like a sailor in his fancy EEG cap.

Tonight is my night to spend the night in the hospital and it's always an adjustment being here. There is a child crying in the next room, the little girl in the room with us is coughing as she recovers from surgery on her lung and I'm sharing a twin bed with Evan -- which is much preferred to the foldout chair a lot of parents sleep on!

Tomorrow morning they will draw blood to check medication levels and I'm hoping for the best on that experience. All in all everyone is in pretty good spirits and we're one day closer to coming home.

The Tracks of My Tears

2010-07-20T22:38:00.004-04:00

So I'm a complete dork, in case you don't already know that, and was all teary driving into work today listening to Smokey Robinson on the radio...

People say I'm the life of the party
Because I tell a joke or two
Although I might be laughing loud and hearty
Deep inside I'm blue
So take a good look at my face
You'll see my smile looks out of place
If you look closer, it's easy to trace
The tracks of my tears...

So of course the rest of this is a break up song but we have had a rough couple days with Evan and the beginning of the song sort of fit how I was feeling.

On Monday Evan had another pretty bad seizure and today he had a bad toxic reaction to his medication so it's been a bit of a roller coaster. It seems like every week we are adjusting his medicine up or down or adding in something new. Evan is completely unfazed by all of it so we really have to follow his lead, but it isn't always easy.

Oh No, Not Another Weekend!

2010-06-14T22:43:00.003-04:00

The weekend is supposed to be a glorious break from the work week, filled with family time, activities and a chance to kick back a bit. With Summer coming it includes the chance to relax in the pool and feel the sun on my skin.

Lately for us the weekends have also brought a big seizure for Evan. For the last six weeks Evan has had a seizure on the weekend and five of those weeks has required Diastat to stop it. Each seizure is longer than the one before and every time we use Diastat it takes longer to work. It makes me wonder if the Distat is working at all. Maybe each seizure is just ending because it has run its course. The question everyone asks is why does it always happen on the weekend and we have no answer for this. It is our question too.

We are still ramping up on the new medication and the lack of change in seizure activity is unsettling. I can see the difference in Evan and I know the seizures, even at a rate of once a week, are taking a toll. His balance is just little off, it takes an extra couple seconds for him to respond to requests and he's tired. We're tired too and as much as I look forward to the weekend, I also dread it just a little.

The Bitter Taste of Diastat

2010-06-01T21:14:00.003-04:00

I will never forget talking to a mom whose child has severe epilepsy and constant seizures, and her surprise that we had never given Evan an emergency medicine like Diastat to stop a seizure. Her exact words were, "We use Diastat like candy." Those words have hung with me since I heard them. Here we were, two moms with the common bond of having a child with epilepsy and at the same time, worlds apart. She and I are still worlds apart but I am reminded of that conversation now and as I struggle with my desire for Evan to regain seizure control, I know she has those same wishes for her child.

We had to give Evan Diastat three times last month and I can only imagine what it must be like to think of this medicine as candy. Each time we gave him Diastat was the same: we hear a noise coming from Evan's bedroom and find him having a seizure. His eyes are wide open, but he seems to look through us and he's stiff and shaking. We get ready to give him the Diastat, a gel in a pre-filed syringe that is given rectally, and after administering it we wait for the medicine to surge through his bloodstream and quiet his brain. One minute passes while we sit watching, waiting while Evan seizes. Another minute goes by and maybe another as we sit helpless watching the ugliness of this disease. Finally it's over and Evan slips into a deep sleep. I want to throw up but don't. It's over. I cry.

I know that as horrible as it is to see Evan go through this, I am thankful for the Diastat. I understand the reference to candy. I still can't relate to thinking of it that way, but f I had to choose between a chocolate bar and Diastat, I'd choose the Diastat.

Three More Seizures, One More Drug

2010-05-13T23:39:00.002-04:00

This has been a rough week for us. After Evan's big seizure on Saturday he had three more on Tuesday morning. These were different though and he was fully aware, completely lucid and we couldn't see any movement or shift in awareness or personality that would clue us into seizure activity. They were simple partial seizures and during the seizure Evan told us he knew he was having it and that he mostly felt weird in his leg, hip and butt. Later he said, "Seizures feel wierd and I don't think they're good for me. But you know what? Sometimes weird feels good." I guess if you're going to have a seizure this is the best attitude to have about them.

After calling the neurology office again, we are now increasing Evan's Trileptal, to a level we know could be toxic for him. The hope is to halt the seizures. We will watch him closely and pull back on the dosage if he can't handle it. The reasoning for this is because it is clearly time to introduce an additional drug (Lamictal) that will hopefully give Evan seizure control again and it takes several weeks to ramp up to a therapeutic dose. When the Lamictal is at a higher dose we'll start to pull back on the Trileptal.

So now we're waiting and watching and hoping for the best.

Just Joined the Diastat Club

2010-05-10T13:43:00.006-04:00

There are some "clubs" you never want to join and this is one of them. Last Saturday Evan had a seizure that lasted too long and we had to give him Diastat to stop it. The seizure stopped quickly, so fast that it may have stopped on it's own or may have been helped slightly by the Diastat. Evan did really well with the medication overall. He was very, loopy and wobbly and with slurred speech was talking about the rules he'll make when he is President, then he went to sleep for about 20 min. and woke up hungry. He went to a birthday party in the afternoon and we all went to a friend's house in the evening. So as far as Evan is concerned, all is well.

As for Rob and I, we are feeling a bit defeated. We will get past this just like we always do but the rebound time is taking longer. The lack of control in a situation like this is burdensome and something we haven't felt in a while.

I think the worst part of the whole event was when Aria started a timer and said, "I hate Epilepsy." She's only 8 years old and should not have to know what epilepsy is much less have an emotional reaction to it.

One Seizure is Too Many

2010-04-22T23:09:00.002-04:00

Yesterday Evan had another seizure and it was a long one. We woke up to him having a seizure and it lasted over five minutes. I really don't like that the length of each seizure is hitting the danger zone every time he has one. The last one was two months ago and was very similar to this one. After the seizure he was tired but popped out of bed when he thought he was going to be late for school and off he went, unfazed by the morning's events.

We spoke with NYU today and are looking at what medication options we have. We'll check his blood levels to see if there is room to increase the medication he's on and also consider adding an additional med. Tomorrow he'll have blood work done before school and the reward (read: bribe) has already been purchased. Pokemon to the rescue!

Tracking Evan

2010-04-21T17:07:00.005-04:00

Tracking Evan won the Filmmaker Award and the Fan Favorite Award at the American Academy of Neurology's Neurp Film Festival! Congrats to filmmaker, Peter von Elling!!

Another Seizure..Enough Already!

2010-02-24T00:51:00.003-05:00

Yesterday Evan had a seizure and it was a big one. It's nice that he isn't having them every day anymore, but how quickly we are derailed when he does have one. Nothing makes me feel more helpless than watching Evan have a seizure. We watch at the sidelines as his body is gripped by something out of his control, out of our control. And we can't make it stop or can't take it away.

So we watch. We hold him, we stroke his hair, we tell him he's safe, we time the length or the seizure, we worry. This one lasted too long, upwards of 5 minutes -- we don't know eactly how long it lasted because when we woke up he was already having it. You start to worry at the 5 minute mark, it's when you administer a rectal medication to stop the seizure and call 911. Rob called 911, I popped the cap of the drug, and on its own the seizure stopped. Just like that it was over. Rob told the operator Evan was ok, that we didn't need an ambulance. Evan, exhausted, went to sleep. I went to work. Back to normal...but the reality is we don't have "normal".

We were more shaken by this than Evan who woke up a little while later saying he was feeling great and wanted to go to school. He missed the bus as he slept off the remnants of his seizure so Rob took him to school -- Evan walked in as if nothing had happened.

Happy Valentine's Day!

2010-02-14T22:07:00.004-05:00

I just want to take a minute to wish everyone Happy Valentine's Day!

This photo is representative of Valentine's Day last year. A couple weeks before Valentine's Day we were in New York with another hospital visit and video EEG for Evan at NYU Hospital. We were staying at the Ronald McDonald House of Long Island and as I walked up to our home away from home, I looked down and this image stopped me in my tracks.

How fitting to see this just a couple weeks before Valentine's Day while walking up to a place who's tag line is, "The House that Love Built". I took the photo and didn't post it last year because I thought it felt like such a cliche -- love peeking though the snow... oh, please. A year later the photo still hangs in my mind so there must be something there. The truth is, when I was stopped in my tracks, I was feeling a bit sorry for myself. I had a child in the hospital, was tired from sleeping there, and was a little cranky about schlepping through the snow. I wanted to be home.

But here I was staring at a single brick that seemed to carry a message just for me. I have looked down at this walkway many times, each brick purchased by a different person and engraved. It's a long walk through names and families and I've been awestruck by the experience every time. I saw this word shouting at me from the ground and the irony was not lost. I lead a charmed life filled with love and I should never forget that. Sometimes a single word can have such impact.

Dear Seizure Diary...

2010-02-13T10:54:00.005-05:00

Not too long ago, Neurology Now did an article about logging seizures and compared different ways of doing it. I'm so glad they wrote this because it is so important to understand an individual's seizure activity in order to provide doctors with complete information. Doctors always make medical decisions based on what we, as patients, tell them and we should take that seriously and give them the best information we can!

Seizure Tracker was mentioned in the article and we were really happy to see what they said...

Neurology Now: Dear Seizure Diary

Since the article ran we've been getting a lot of emails from people who got the magazine in the mail or saw it in a doctor's waiting room. It feels good to know we are making a difference!

Happy Thanksgiving!

2009-11-26T21:15:00.003-05:00

As we reflect on the many things we are thankful for, I can't help but be reminded of what November represents for our family. November is the month Evan was born, National Epilepsy Awareness Month, the month Evan had brain surgery, the launch of www.SeizureTracker.com and of course Thanksgiving.

We've certainly packed a lot into this month and one of the things we are always most thankful for is the success of Evan's surgery. I don’t know if we’ll ever stop watching for seizures, but we’ve stopped expecting them. Two years ago we spent Thanksgiving in the hospital. On that Thanksgiving day Evan took his first wobbly steps after three weeks of being confined to a bed and having undergone three surgeries. He rode in a wagon to the hospital play room where we celebrated the holiday (and Evan's surgery) with the other families on the floor. There was turkey with all the trimmings and although it was unlike any Thanksgiving we'd ever celebrated, it seemed fitting to be there with this cobbled together group of people from all backgrounds, brought together by different circumstances, to spend Thanksgiving together.

A lot has changed in two years and I am thankful not to be spending Thanksgiving in a hospital, but in the warmth of our friend's home, in good health and surrounded by love and laughter. I am thankful not to watch Evan have multiple seizures every day and thankful for the way his future looks today. I am thankful that the seizures are not a daily occurrence and hope they remain only as memories.

I am thankful to our family and friends who have offered support in many ways throughout the years and who have been with us in good times as well as more challenging times. I am thankful to Aria who is wise beyond her years and reminds us to be compassionate to all living things and respect the earth. I am thankful to Evan who is blessed with comedic timing and can always make me laugh. I am thankful to Rob who balances me and enriches my life.

Happy Thanksgiving!
Lisa

2009-11-21T22:30:00.004-05:00

Our family was featured in Epilepsy USA magazine this month. This is a real honor, especially during Epilepsy Awareness Month. The article is a reprint from Epilepsy 360 in Australia...

Epilepsy USA Magazine Article: Evan's Story

It's great to be featured but these stories bring back raw emotions we thought were buried and gone. This photo appears in the article and this is the expression Evan wore for almost three weeks with occasional smiles that often looked more like grimaces. How far we have all come!

My Son the Chemistry Experiment

2009-10-22T21:10:00.002-04:00

We've been home from NY for almost two weeks and Evan has had two experiences with tunnel vision since we got home.

The first one was the day after we got home and we blamed it on the multivitamin he was taking. He started taking the multivitamin and started having some little breakthrough seizures and tunnel vision in the same time period prior to going to NY. Then he didn't have the multivitamin in the hospital and everything was great. We came home, gave him the vitamin and he had tunnel vision. We stopped the multivitamin and he had no tunnel vision or side effects, so naturally we took turns patting each other on the back for our brilliant medical detective work.

Everything was smooth sailing until today. We received a call from the school that Evan was having tunnel vision and nausea so we went and picked him up to wait it out at home. We're pretty much convinced that the issue is related to his medication dosing because it always happens after he would have metabolized his morning dose. After talking to his doctor we are going to try adjusting the amount he gets in each of the three dosages but keep the total daily intake the same. Hopefully that will spread out the medication better and Evan will stop having side effects.

No more wires!

2009-10-11T10:58:00.003-04:00

We are finally free!
Yesterday was a whirlwind...Evan finally got disconnected from the Video EEG, we left the hospital, packed up our stuff from the Ronald McDonald House, Grabbed a quick dinner and rode the bus home. We got home at about 10:30 last night and it is so good to be home!

The EEG was completely clean -- after 4 days of monitoring they saw no seizure activity (neither did we) and no abnormal spikes in the EEG patterns. So that's good news! As for the crazy seizure activity, tunnel vision and nausea, we don't have clear answers. Maybe it's just his body adjusting to the increase in meds last week. None of it was repeated in the hospital so we're going to watch and see how he does at home. If the symptoms persist, they will be blamed on the medication not working or Evan reacting to it and we'll switch to a different med.

So for now we wait and watch...

Pokemon Evan

2009-10-08T19:41:00.007-04:00

Evan thinks having his hair stick up from the EEG leads makes him look like Cascoon from Pokemon. I just think it makes him look studly, especially with the GQ pose!

We haven't seen any seizure activity since we got to NY and I "slept" with Evan last night at the hospital. This morning they took blood with a finger prick and Evan scored some Yu-Gi-Oh! cards. His favorite is one called Silent Abyss -- no irony there!

After the finger prick the lab said there were issues with the blood test and they wanted a blood draw from a vein. Evan was so NOT cool with this idea. As the resident tried to convince him that it would be fast I heard blood curdling screams come from my son just at the very thought of a needle. This is not typical behaviour and in the end he won...for today at least, they'll try again tomorrow.

Things got better after that and it was great having Aria here with us...even with everything going on there is still a lot to smile about! I love how close they are.

Evan Super Moss

2009-10-07T20:04:00.003-04:00

We are in the hospital and Evan is hooked up the the Video EEG and enjoying the opportunity to watch all the shows we never let him watch at home. In the hospital, pretty much all rules are out the window!

We left early this morning and Evan had more tunnel vision, threw up twice on the ride up to NY and then slept most of the way to the city. We are really thinking the tunnel vision / vomiting is a toxic reaction to the medication increase, but there is still the issue of the seizures that caused us to increase his meds in the first place.

I snapped this photo with the camera on my phone as we were walking to the hospital and thought it was fitting...

2009-10-07T00:10:00.002-04:00

Today (which has technically past) was pretty rough. Evan started having seizures this morning and they just kept coming and coming. They were Simple Partial seizures and we couldn't see any movement or twitching except for in one of them. He never lost consciousness and was able to tell us when they started and stopped and we tallied 19 seizures in break-neck speed. After the seizures stopped he moved onto several bouts of tunnel vision (possibly seizures or maybe a toxic reaction to medication) and vomiting.

So we are heading up to NYU Hospital tomorrow morning and Evan will be checked in for a Video EEG for a few days of monitoring. We are bringing Aria with us on this trip and it'll be nice to have her there with us -- we gave her the choice to come with us and she wanted to go. It might be hard for her to be at the hospital for that long but I think it's even harder to be at home waiting for information with an overactive imagination.

I'll try to post every day while we're in NY to keep everyone up-to-date. We leave the house in six hours so I guess I should head to bed!

2009-09-07T22:53:00.002-04:00

Two days ago I posted on Facebook "Today we are celebrating -- Evan is 8 months seizure-free! Every day without a seizure I feel luckier than the day before."

Yesterday Evan complained of having tunnel vision that lasted about an hour.

Today Evan had a seizure.

Tomorrow I will feel luckier than today.

Vote for Seizure Tracker to win $100,000

2009-09-03T22:36:00.006-04:00

We are thrilled to have been nominated for the American Express, iVillage & NBC Universal's "Shine A Light" spotlight award. This award is to recognize small businesses who are making a difference through innovation, customer service and community service. The winner will receive $100,000 in grant and marketing support.

We need votes to make it to the next round where judges will narrow the companies down to three finalists, followed by another round of public voting to determine the winner. This could mean a huge leap forward for our little company and will allow us to make several vital upgrades to the site as well as reach a broader audience that would find SeizureTracker.com helpful.

I am going to be promoting this and asking for votes repeatedly until September 13th and I can't apologize for spamming anyone because it really is for a good cause. So instead of apologizing I am appealing to everyone I can...

If you have ever asked us how we can afford to make SeizureTracker.com free...vote...the truth is we can't afford to fund this tool on our own indefinitely.

If you have ever told Rob or I that you admire us, find us inspiring or simply asked us how we manage everything...vote...we have big plans for the future of SeizureTracker.com and the support from this contest would be invaluable.

If you know anyone who has ever had a seizure (and I know you do) VOTE, VOTE, VOTE! SeizureTracker.com was created by a family dealing with epilepsy for the sole purpose of helping anyone living with epilepsy.

Please follow the directions on this link and vote today and forward this to your friends!

Vote Here for SeizureTracker.com

Thank you so much!

Wait and See

2009-08-30T11:34:00.002-04:00

We are familiar with the process of wait and see and that's where we are again. After following up with two nephrologists to talk about the growing tumor in Evan's kidney they both had similar things to say.

Basically, the tumor is still small, even though it has tripled in size. With the longest dimension at 2.5 cm, they won't be concerned unless it reaches 4cm. At 4 cm the wall of the tumor becomes thinner and the chance of it rupturing increases. One of the doctors suggested avoiding putting Evan in Kung Fu, Kick Boxing or Gymnastics because an abdominal blow or pressure on a gymnastics bar could increase the chance of it rupturing. Obviously, an active 5-year-old will find himself in plenty of situations where an abdominal blow is possible and we aren't going to make him feel different or incapable of doing what his friends are doing but we'll have to be selective on what activities we sign him up for. Like many other things, it's a balancing act.

The next steps are more tests to see if there are any changes so we'll just wait and hope there is nothing to see.

Renal Ultrasound

2009-07-15T21:55:00.004-04:00

Yesterday was not filled with good news. As anyone who deals with Tuberous Sclerosis (TSC) knows, you have to celebrate the times when things are going well and progress is being made because you just never know what's around the next corner or when when you'll walk into a brick wall.

We have known for three years that Evan had a small tumor on his left kidney. It was diagnosed as an angiomyolipoma (AML) which is usually benign and not uncommon for TSC patients to develop. It was the kidney involvement that confirmed a TSC diagnosis years ago. The AML was small and these tumors don't usually grow in young children so our plan was to monitor it and not worry too much, especially since Evan had three brain tumors that were causing much more concern at the time.

So yesterday we took Evan for a follow-up renal ultrasound and we approached the appointment with the the expectation that this would be a routine check-up and no real news or changes. Enter the brick wall...

Apparently the tumor has basically tripled in size, at least in length and is 2.3 cm at the longest measurement. This is clearly not good news but a growing benign tumor is a totally different issue that a growing malignant tumor and at this size it is still considered small. According to what I've read, in TSC patients, AMLs become a concern when they reach 4 cm because the wall of the tumor becomes thinner and weaker and the chance of rupture increases. When the tumors get to this size the consideration is embolization (basically tying off the tumor where it connects to an artery so it will stop growing) or for more advanced cases removing the tumor surgically. So the bottom line is that Evan is not in an emergency situation, but will need to have his kidneys monitored closely. We have an appointment with a pediactric nephrologist in a few weeks so we are eager to hear his suggestion for a game plan and possible outcomes.

At the moment we have more questions than answers but feel confident that the increase in size has been identified early and we're optimistic since the tumor is still small.

Evan was a champ through the appointment and delighted in showing the technician the temporary tattoo on his stomach!

2009-07-13T19:23:00.004-04:00

Epilepsy Action in Australia contacted us about writing a story about our family and here is the link to it...

http://www.epilepsy.org.au/pdfs/360_June09_P6_7.pdf

They were interested in our family story and how it led to the creation of SeizureTracker.com. We already had people using the site in Australia but we're definitely seeing an increase now. I'm so glad we are slowly getting the site to people who will find it helpful!

National Epilepsy Walk, March 28, 2009

2009-03-11T22:00:00.003-04:00

Amazingly, it's been a year since the last National Epilepsy Walk. We are putting together a team again this year and I find it interesting that this is an emotional experience for me. As we set up our pages this year I couldn't help reflect on our experience with epilepsy. We have seen more seizures than anyone should have to witness and after Evan's surgery we brought home a seizure-free 4-year old with a lot to celebrate! The surgery brought challenges too though and when Evan left the hospital he was only able to take a few steps before he was exhausted. He had to learn how to walk again and he's such a tough little kid that he quickly pushed forward and is now running, jumping and playing harder than ever. We've seen only a few seizures since his surgery but they are pretty much controlled by medication. Our biggest hope is that this continues to be the case!

Organizations like the Epilepsy Foundation are dedicated to epilepsy research and finding better treatments and a cure for epilepsy and we are thankful for that. We are proud to be walking the walk again this year and are looking for people to join our team or sponsor us. Check out our team page...

http://giving.epilepsyfoundation.org/goto/SeizureTracker

This is the face that motivates us...he's this cute in person too so it works against us a lot!

Congressional Lobbying Effort

2009-02-19T21:42:00.002-05:00

We are joining the lobbying effort for TSC research funds again this year and are hoping for another successful outcome! Last Fall Rob was lucky enough to sit on the panel that reviews the research grants submitted and got to see all the incredible programs being funded to search for better treatments and a cure for TSC.

There are some really brilliant minds working toward these goals and I am thankful for their dedication and commitment.

There are only a few days to go before we hit Capitol Hill and start making the rounds with the Virginia representatives. We are double-booked with appointments but we'll make it all work out!
We'll be bringing with us a collection of personal stories from Virginia families and the TS Alliance will be bringing a petition. If you want to help, please consider signing the petition...

http://www.ipetitions.com/petition/tuberous_sclerosis/index.html

There are almost 5000 signatures already!

Hooked up

2009-02-04T16:07:00.002-05:00

Here is a slightly fuzzy shot from my phone that illustrates the last couple days...hooked up to the video EEG, watching Spongebob and eating lollypops! We also spent a lot of time in the playroom and had a blast in art therapy -- not sure who it was better for, me or them!

The news is all good and I'm hoping it stays that way. Nothing to worry about on the EEG and no news is good news! We checked out of the hospital today and will head home tonight.

We're in NY for a Video EEG -- a few snaps

2009-02-04T15:58:00.003-05:00

We are staying at the Ronald McDonald House of Long Island which is pretty amazing. Everyone here is so wonderful and it really is like a hom awa from home!

Before Evan met with his doctor and checked into the hospital for monitoring on Monday we played at one of the nearby playgrounds to kill some time and burn off some energy.

Then we checked out the greenhouse and fish pond in the hospital. We timed it well and even got to feed the fish.

Evan wins the battle but his brace loses

2009-02-01T21:07:00.008-05:00

Often before my first cup of coffee Evan says to loudly and very serious, "Mom, are you ready to battle?" He hands me a Pokemon and I'm expected to know who's in the closed Pokemon Ball and what powers it possesses to be a worthy opponent to Evan's yet undefeated Pokemon. A few days ago it seems Evan "battled" with his brace and it was thoroughly defeated...

He didn't do anything out of the ordinary but was just being his normal crazy self and caused the brace to crack at the ankle. Guess these aren't much use anymore. Luckily he just got fitted for new ones and they'll be ready in 3 weeks. This will send us back to see if they can do a temporary fix on this one but I'll be impressed if they can salvage it!

His fitting last week was pretty amazing -- it was the first time he had the casting done that wasn't traumatic and emotional for all of us. It was so overwhelming for him when he was younger. Here's a snap of the casting process...

I hope the ease of this appointment is a sign of Evan being able to tolerate testing better. Tomorrow he will be checked into NYU Hospital for a Video EEG and it would be great if he doesn't freak out when they glue all the EEG sensors on his head. We'll all be keeping our fingers crossed!

Julianne Moore: Spokesperson for the TS Alliance

2009-01-21T20:28:00.005-05:00

Julianne Moore has been the official spokesperson for the TS Alliance for several years and appeared on Access Hollywood a couple weeks ago. Here is the URL to the video...

http://www.accesshollywood.com/julianne-moore-lends-support-to-tuberous-sclerosis-foundation_video_924963

She has been an amazing supporter of the TS Alliance.

Vigabatrin Recommended for FDA Approval!

2009-01-09T23:05:00.002-05:00

This is really great news and a long time coming!!!

This week an expert committee unanimously recommended the FDA approve Vigabatrin for the treatment of Infantile Spasms and Complex Partial Seizures. This is a huge step forward, especially for children experiencing Infantile Spasms which can be a devastating seizure type that can significantly impede neurological development.

Children who have TSC have a higher chance of having Infantile Spasms, a rare and catastrophic form of epilepsy that almost always starts before one year of age. The spasms typically last for one to five seconds and occur in clusters of up to 100 at a time and can cause severe developmental delay. Currently, there are no FDA-approved therapies and Vigabatrin has been proven effective in controlling infantile spasms in many cases, especially when the underlying cause is TSC. Early diagnosis and treatment is essential and can improve neurologic function.

Vigabatrin will now move toward full FDA approval, which may take four to eight months, but well worth the wait. Right now anyone prescribed Vigabatrin in the U.S. is getting the medication through Canada or Mexico and insurance doesn't cover it. I am so happy to think about the families who need this drug actually being able to get it without jumping through hoops and waiting days for it to arrive through customs.

A new year...a new seizure

2009-01-06T17:31:00.012-05:00

It pretty much sucks to be writing this and yesterday was a rough day for our family to say the least. Evan had a seizure and we ended up spending 13 hours at Children's Hospital in DC yesterday. Fortunately my parents were still in town and we didn't have to make plans at 5:30 am about how to get Aria to and from school!

Evan crawled into our bed at about 3:00 am and then had a seizure at 5:30 am. At first we thought he was going to throw up because he kept crunching his body in while lying on his side and making a funny noise in the back of his throat. Then we realized he was doing this consistently every 3 seconds and he was having a seizure. After a couple minutes we began fumbling through the closet for Diastat (rescue drug to stop a seizure) and it was expired. SHIT! We've never seen him have a seizure like this or one that lasted so long and we were starting to get worried that it wasn't stopping. Evan's eyes were open but he wasn't able to talk to us. We were starting to set up the expired Diastat, hoping it would have some effect and were thinking about calling 911. Maybe just the threat of a rectally administered drug worked because Evan’s seizure began to subside. Whew! It lasted almost 3 minutes and Evan sat up and fell instantly asleep in my arms. We called the phone service at NYU Hospital and left a message for the on-call neurologist to call us back. Evan slept until the phone rang a half hour later and I asked him to squeeze both my hands. He did fine with the left but his right hand barely moved. I asked him to squeeze really hard and he said he couldn’t. Prior to surgery he used to have weakness on his left side after a seizure but never on his right side and never this long afterward.

The on-call neurologist suggested we go to the ER to get his head scanned. Under different circumstances we may not have gone to the hospital since the seizure had stopped on its own, but last week Evan fell off a slide platform on the playground and hit his head pretty hard. The doctor recommended we get him checked out thoroughly since he hadn’t had a seizure in so long and it manifested so differently and the weakness in his hand lasted so long.

At the hospital they did a bunch of blood tests and put us in an observation room in the ER until they had an available MRI slot. There was a lot of waiting around and Evan was in good spirits. He charmed all the nurses and when we finally left the hospital we had an armload of toys and stuffed animals they had given him. The MRI results came back with no changes since the one he had last March and we were relieved. One of the blood tests was to check his medication level and that won’t be back for a couple days but we increased his meds a bit and hopefully we won’t see any more seizures. What an ordeal! Everyone at Children’s Hospital was wonderful to Evan and they worked with his neurologist at NYU each step of the way. As we were leaving one of the nurses even gave him a popsicle for the road – his fifth popsicle at the hospital, but who’s counting?

Yesterday was a bad day but today we are happy to say Evan is one day seizure-free. I hope the trend continues for a long long time.

Goodby 2008...Hello 2009!!

2008-12-31T17:17:00.003-05:00

Happy New Year!!!

I can't believe it's the last day of December -- where did the year go? For our family, this year closes with so much to reflect on and be thankful for. We celebrated the one year anniversary of Evan's brain surgery and our lives are so different and our hopes for Evan's future have significantly changed. Without the burden of daily seizures, he has many more opportunities for independence from our watchful eyes and he can run around and cause havoc without me trailing him quite so closely. He looks like a different child too: no more dark circles under his eyes from poor sleep due to seizures and his visual focus is more in the moment than wandering off somewhere.

Aria continues to amaze and impress us with her natural sense of empathy and consideration for others. I often said I worried more about how Evan's surgery would effect Aria, but she seems to take everything in stride. Her questions are challenging and we just answer everything as honestly as possible. She's looking forward to our next trip to NYU (more than Evan I'm sure) and always loves being in NY and buying things from the street vendors.

Rob and I are happy and proud of our children and the people they are becoming. Every year just gets better than the one before. Although this year was filled with medical challenges as our whole family recovered from Evan's surgery, I feel like we're closer than ever and have overcome so much.

We are looking forward to 2009 and wish everyone a happy and healthy new year!

Dr. Howard Weiner will be on TV!

2008-12-16T22:25:00.004-05:00

So if you read this blog you probably already know how much we adore and respect Dr. Weiner. He performed Evan's surgery last year and gave our family the gift of a miracle that will last a lifetime. This is Evan and Dr. Weiner before going into the operating room for the third stage of his surgery...

On Friday, December 19, The Doctors will air a story on TSC featuring the Rolfes family, Dr. Howard Weiner of NYU, and the Hammerquist family. Besides discussing TSC, the segment will focus on the Hammerquist family's son's recent epilepsy surgery. This new show appears at various times across the country, so click here to search local listings. In addition, I heard this will be the show's "holiday giving" episode.

Check out what we did yesterday!!

2008-10-05T20:59:00.004-04:00

We took the kids rock climbing and I couldn't help reflect on how amazing it was that we were able to take BOTH kids to experience this. Last year, prior to Evan's surgery he was having way too many seizures to consider rock climbing. On the way home, Rob and I were talking about how far Evan has come since surgery -- just 10 months ago we brought him home from the hospital and he was unable to walk independently and now he's climbing a big cliff fearlessly. His progress has been inspiring to say the least! Here are a few snaps from our day...

What a blast everyone had! They are already asking when they can go back and Aria told us she wants real climbing shoes.

Get Your Shoppin Fix -- For Charity!!

2008-09-05T22:30:00.007-04:00

It doesn't get better than this:
--spend $5
--the money benefits the TS Alliance
--Shop at Macy's on Sept. 20 and get 20% off

Who's in? We can meet at Macy's for a mass shopping trip unlike anything that's ever been seen before! All you have to spend is $25 to come out ahead and it's for a good cause!

SHOP FOR A CAUSE

On Saturday, September 20, Macy's stores nationwide will host a Shop For A Cause charity shopping day. Donations will benefit the TS Alliance and other local nonprofit organizations. Make a $5.00 donation and you will receive your exclusive all-day pass in the mail, and on Saturday, September 20, you will be entitled to receive a special savings of:

* 20% off regular, sale and clearance women’s, men’s and kids’ apparel and accessories, fine, bridge and fashion jewelry, bed & bath items, housewares, frames, luggage, china, crystal and silver, all kitchen and personal care electrics and technology items.
* 10% off regular, sale and clearance furniture, mattresses and rugs.

Here is the link to make sure your $5 goes to the TS Alliance:

TS Alliance shop for a cause page

Thanks for shopping! And please let me know if you want to go together!

Evan as Cover Model!

2008-09-01T22:41:00.005-04:00

A few months ago the TS Alliance asked us to write an article about Evan's experience with TSC, Epilepsy and brain surgery and how we launched www.seizuretracker.com during this time period. So we sent the article and a few photos to them and here is the PDF of it -- the article is a few pages in...

http://www.tsalliance.org/documents/Perspective-Summer08.pdf

It was pretty amazing to get our copy in the mail and see a big photo of Evan on the cover!

2008 Minnesota Epilepsy Stroll - Duluth

2008-08-27T22:18:00.009-04:00

What's a vacation without taking a break to participate in an Epilepsy Stroll! We have so much family in Minnesota that it seemed like the obvious thing to do when we found out the Stroll was happening while we were in town. We raised money for the Minnesota Epilepsy Foundation and also spread the word about SeizureTracker.com.

Here we are in our Seizure Tracker shirts before the walk.

There was a sign thanking each team that walked.

It was a beautful day and there were around 400 people walking in Duluth.

The stroller brigade rules!

Team SeizureTracker.com

Minnesota Vacation

2008-08-12T00:09:00.004-04:00

I haven't posted here often because quite frankly, I haven't had much to say. Evan is doing really well and after follow-up visits with his docs in NY, he continues to have a clean bill of health. Of course we couldn't be happier!!! This is how each of the doctor visits went...

Dr.: So how's Evan been doing?
Us: Great!!
Dr.: And what's been going on the last few months with him?
Us: Nothing!!
Dr.: Great!!

Then we chat about how wonderful Evan's progress has been and everyone smiles in agreement and we chat some more. We really should have had tea and crumpets because the appointments felt more like social calls with friends than doctor visits. This feels like a much better way to continue these appointments!

At the moment, we are in Minnesota visiting my folks, and because we have a somewhat warped sense of vacation, we are doing an Epilepsy Stroll while we're here. We just happened to find out it was going on a couple weeks before our trip and we're looking forward to it. We have so much family here that we actually have a pretty big team - about 20 people all together. Here is our page for the walk:

www.firstgiving.com/seizuretracker

Check out the photo on the page. It is of Evan 2 weeks after surgery and he is still chubby from how much he ate while he was on steroids. The scar is still healing and you can see it on the right side of his head if you look really close. I decided to use this photo for the walk page and when Evan saw it he didn't know who the boy was! I have to agree though, Evan looks nothing like this now!

Seizure Tracker on Facebook

2008-07-10T22:54:00.003-04:00

Well, I have entered this millennium and I have to admit, I feel a little old. I have embraced Facebook and it's actually pretty cool. I'm a latecomer, but better late than never I guess! I set up a profile for myself and also set up a profile and Fan Page for SeizureTracker.com. My thought is that the Fan Page can act as an online community for anyone using Seizure Tracker, and where better to do that than on Facebook? If you want to check out our Fan Page, follow this link...

SeizureTracker on Facebook

Let me know what you think!

Still Smiling

2008-06-25T21:18:00.002-04:00

If you want to see me smile...beam really...just ask me how Evan is doing! He's doing great! Have I mentioned how lucky and blessed we are as a family? It has been just over seven months since Evan's surgery and we aren't seeing any seizures. This is thrilling, but on top of that, he seems to be doing better in other areas since Dr. Weiner worked his magic.

He was always verbal but his vocabulary is really taking off, in addition to the nonstop verbal commentary on anything and everything. Last week I took Evan to PT and asked his therapist, Kim, what she thought about his progress. Evan has always had some weakness on his left side, particularly his leg and foot and immediately after surgery we saw a greater range of movement in his ability to bend his toes. This improvement has revealed itself in his recovery. Kim said although you do expect some improvement due to being older, Evan has improved too quickly for the surgery not to have played a major role in where he is now physically. Evan is starting to lead with his left foot more even when doing something hard and he is able to jump higher and even has better endurance. We've been taking him to swimming lessons and have pulled out his bike now that the weather is warmer and both activities offer really good PT for him. He puts on his "super boy" cape, blasts off down the sidewalk and doesn't stop running until he gets to the end of the street. It's quite a sight to see!

So go ahead and ask me how Evan is doing. I used to hate that question because I never knew how much or what to say, but not anymore. He's doing amazingly well and I'm even smiling as I type.

Pharmaceutical Nightmare

2008-05-26T21:36:00.002-04:00

Have you ever seen someone's head actually explode? Mine came as close as possible last week and for those of you who have never seen me really mad, you missed a rare opportunity.

We picked up Evan's Epilepsy medication from the pharmacy and the next morning when we opened the bottle, we noticed the pills were a different color. Rob and I started studying the pills. Pink? They are supposed to be yellow. And aren't these a little bigger too? The label is correct, but these don't look right. I remember a lot of hoopla a couple months ago about an anti-epileptic med changing color but I thought it was one of Evan's old meds, surely I'd have remembered if it was the current one.

It was early, the pharmacy wasn't open, so we fired up the computer. Our suspicion was confirmed. The pharmacy gave us the WRONG medication, more specifically the wrong dosage. Instead of 300 mg Trileptal they gave us 600 mg Trileptal. If we had given this to Evan he would have had twice the dosage he's supposed to have and would very likely have ended up in the hospital with a toxic level of the medication is his system.

Back in December, when we were trying to get his medication levels straightened out after surgery, he had a toxic reaction to 450 mg of Trileptal that caused some pretty scary seizures followed by several days in the hospital. Last week we were poised to give him 600 mg. I don't even want to think about what would have happened "if".

The scariest part is that there are three different steps at the pharmacy to ensure something like this never happens. So three items were ignored in dispensing Evan's meds. The level of irresponsibility is astounding to say the least.

SeizureTracker.com in Top 10% for Fund Raising!

2008-04-15T22:08:00.006-04:00

So, I think our team, SeizureTracker.com, is entitled to some bragging rights...I was just looking at the Epilepsy Foundation 2008 Walk page and I saw that our team is listed as one of the top fund raising teams! We ranked 38 out of 424 teams -- woo hoo!

2008 National Walk for Epilepsy Top Teams

Not that it's a competition, but let's be honest, isn't everything a competition? I'm just so proud of everyone who helped make this happen! Thanks!

Thank You for Your Support!

2008-03-30T21:27:00.006-04:00

We had a blast at the Epilepsy Walk and had a pretty big group of walkers...

We are all bundled up on a brisk Saturday morning. We were really hoping for a warm day but were glad there wasn't rain!

We want to thank everyone who donated to our team -- we raised almost $3700! I can't thank everyone enough for that support. The 2008 walk overall raised $1.1 million -- not too shabby!

We also want to thank everyone who walked with us and raised money: Chuck, Mary, James, Steve, Nora, Beth, Marcus, Josh, Debbie, Ken, Madison, Alexandra, Grant, Maria, Michael, Jackson, Jane, Sharon, Susan, Corrine, Robin, Keith, Chris, Laura, Luke, Rob, Lisa, Aria & of course, Evan.

Also, a special shout out to Billy at (Warning : Don't click this link if you are easily offended) www.tshirtsthatsuck.com who donated the silk screening of the T-shirts! This is the second year he printed the shirts for us and the second year that we were the best looking AND best dressed team at the Walk!!!

Aria's Thoughts

2008-03-27T21:22:00.002-04:00

Occasionally, people ask us how Aria is effected by everything going on with Evan. She seems to handle everything in stride and frequently impresses us with her ability process all the information and respond with insightful comments and questions.

Although Aria loves reading, writing is challenging for her. Each week she has a writing assignment due on Friday and this week, much like every other week, she kept putting off doing it. At dinner tonight we talked a lot about the epilepsy walk and she decided this would be her topic. She sat down and wrote until it was finished even though she was tired. This is what she wrote:

We're doing a epilepsy walk. Here's how it works, first we get a lot of people to walk with us, second we ask people to sponsor us, next we do the walk. We're doing the walk to stop seizures all over the world. I don't think seizures are very good. My brother used to have seizures, he had surgery to stop his seizures and now they're all gone! I hope some day there is no such thing as seizures.

We're Home!

2008-03-22T11:42:00.003-04:00

We're home and very happy to be back! Unfortunately Evan came home from the hospital not feeling up to snuff. Hospitals are such germy places! Yesterday we went to the doctor and had a low-key day at the house and he seems to be feeling a little better this morning. Today we are going to get out of the house so Aria can use up some of her saved up energy!

Now that we're home and I've had some time to reflect on our stay at the Ronald McDonald House I have two stories I want to share...

All the Ronald McDonald Houses are privately owned and run, so they are all different. The one in Manhattan, where we stayed on this trip, is reserved for kids with cancer. Although Evan doesn't have cancer, we were able to stay there because they weren't full. A lot of the kids are going through chemotherapy and radiation and it's amazing to see them all running around with big smiles. I remember when my dad had cancer and went through treatment and how horrible he felt -- you just can't keep kids down! What interested me in my own kids is that they seemed completely oblivious to the differences in all the kids staying there -- some were bald, some wore masks to protect them from germs, some had tubing in their hands to be connected to an IV when they went for outpatient therapy. I was waiting for questions from Aria and Evan, but they never came. That's the amazing thing about kids, they can look at people for who they are with a purity adults lack.

There is playroom downstairs and it's huge. There are craft areas and several play areas set up to offer something for everyone. In one corner there is an arcade room with several stand-up video games, driving video games you sit in and PS2 set-ups. Evan was checking everything out and was interested in a driving game that someone was playing. The older boy saw Evan and offered up his seat in the middle of a game to let Evan try. It was very nice of the boy, but offered a challenge too. The boy was in a wheel chair and had gotten out of the chair to play the game and was now supporting the weight of his body with his arms as he helped Evan play the game. I watched as he and Evan played together and was interested to watch both boys work together. When the game was over, Evan hopped down and watched his new friend play. I was struck by the thought that the interaction was probably good for both kids. We all need help sometimes, but what feels best is to be able to help someone else.

Lots of Fun at the Ronald McDonald House

2008-03-20T16:29:00.003-04:00

Yesterday was a BIG day full of excitement! First of all we got to check Evan out of the hospital which was huge, but when we got back to the Ronald McDonald House, it was party central. We started with an art project to make decorated paper Easter eggs and after that there was a celebrity visit followed by egg dying, dinner, Easter egg rolling and an egg hunt! Whew, I’m still tired just thinking about it! The kids all had a blast and it was fun watching them all have such a good time.

The celebrity visit was the high point for me, but if you don’t watch a lot of the Disney channel, his celebrity status may be lost on you. Johnny of Johnny and the Sprites came for a visit. He was really cool and sang songs and played games with the kids. Everyone had a great time with Johnny and Root, the Sprite. Evan had a lot to tell Johnny and was not shy about asking questions.

Aria, Root the Sprite, Johnny & Evan

At one point Johnny played a few rounds of Simon Says with the kids, only they substituted in all the kids' names for Simon. When it was Aria’s turn she said, “Aria says hop on one foot” so of course everyone began to hop. Then she said, “Stop hopping” so everyone continued hopping. We were all laughing so hard and Aria was getting out of breath hopping and never gave a third command so Johnny had to step in for a round of Johnny Says!

Don't stop hopping Johnny!

After Johnny and Root left, we moved right into Easter celebrations. All of the Easter festivities were fun too and it looked like every kid staying here had a blast. Most nights at the Ronald McDonald House are a little quieter, but the staff here sure does a great job at making this a fun place where everyone feels welcome.

Good News is Good News!

2008-03-19T21:35:00.002-04:00

Get ready to hoot and holler because the word from all the testing is that Evan is NOT having seizures! We didn't think he was, but we were noticing an odd muscle twitch when he falls asleep and as he wakes up. It was easily diagnosed as Myoclonis, which is basically just involuntary twitching caused by muscle contractions. Dr. LaJoie said anyone can have this, but it is even more common to occur in people with epilepsy. Sounds good to us! His EEG was clear of all unusual spiking and everyone was thrilled to see that. Dr. LaJoie also remarked on how different this EEG was compared to the one before surgery. Looks like a completely different kid -- in fact, he is a different kid. After the surgery we were told that Evan would be evaluated and treated as if he were a new patient because his brain has changed so dramatically.

We have finally gotten the go-ahead to take Evan off a drug he's been on since before the surgery. It sometimes gives him insomnia so we are happy to get rid of it! Dr. LaJoie didn't want to take him off of it until now because she wanted to have a chance to evaluate him for a few months post-surgery.

So good news all around!

Post-Surgical Testing - NYU Hospital

2008-03-17T22:38:00.004-04:00

We are back in New York and have had a big medical day. This is a routine trip to follow up on the level of surgical success. We planned the trip to coincide with Aria's spring break so we could do this trip as a family. Today we met with Dr. Weiner, Evan's surgeon, and it was great to see him. He was happy to hear how well Evan is doing and was very pleased by the MRI results. I think he's almost as interested as we are to see the results of this week's Video EEG.

From Dr. Weiner's office, we crossed the street to begin the process of checking into the hospital. It's a strange thing to have your child in the hospital because everything about your normal life is left behind as you walk in the door. The environment is surreal and if I didn't wear a watch I'd have no idea of the time of day. You order food to be delivered because it's time to eat and not because you're hungry.

Evan is a bit of a rock star at the hospital and has a way of endearing himself to everyone who meets him. We visited the nurses in Intensive Care and they were all excited to see him again and remarked on how tall he had gotten in just a few months. They had hugs and kisses for him and threw him in the air as he laughed. He also got a lot of special treatment from the Child Life Specialists who organize all the daily activities for the kids on the floor.

After all the socializing, it was time to get down to business and get Evan hooked up to the EEG leads. This is never a pleasant process and although it doesn't hurt, Evan cried through the entire process of gluing the leads on his head. That was the hardest part of today, but it wasn't a big surprise because Evan has always hated that part. Now he is being monitored through the EEG leads while being video taped and he'll be the the hospital for a few days. We are all hoping to hear good news over the next few days. We don't think he's having seizures and hopefully that will be confirmed this week.

This evening, there was a St. Patrick's Day party on the floor, complete with Irish dancers. Evan was allowed to unhook for an hour so he could attend and he ended up being the hit of the party. At one point during a break between dancers he showed off his own dance moves and then before they did their last dance he raised his hand and asked if he could dance too. They had him join the dancers and Aria and another little girl did too. It was a riot watching them all weave in and out as they did "the snake dance" (think Congo line with Irish clogging) . Everyone got a laugh at the scene of dancers and I'd say the party was a success! Evan is definitely not shy, but I'm not sure if it comes from confidence or a sense of indifference to what other people think. Either way, it'll serve him well.

National Epilepsy Walk, March 29, 2008

2008-03-08T23:37:00.004-05:00

I can't believe it's been a year since the epilepsy walk! So much has happened in such a short time. We are, of course, participating in the walk again this year. So much of what we are thankful for is due to the advances funded by organizations like the Epilepsy Foundation, so to say they are near to our heart is an understatement. We are assembling our team and would love to add members to our crazy crew! Please consider sponsoring this great cause in whatever way you can...

Team Page:
http://www.walkforepilepsy.org/goto/SeizureTracker.com

Our individual pages:

http://www.walkforepilepsy.org/goto/Evan_Moss

http://www.walkforepilepsy.org/goto/Aria_Moss

http://www.walkforepilepsy.org/goto/Rob_Moss

http://www.walkforepilepsy.org/goto/Lisa_Moss

Welcome to Lake Weiner

2008-03-04T21:55:00.004-05:00

Today we spent the morning at Children's Hospital in DC. We were there so Evan could get an MRI done prior to his next set of appointments with the team at NYU Hospital. We'll be up there in a couple weeks for appointments and some extensive testing, but NYU didn't have an MRI opening until May so we had it done locally.

One of the pretty cool advances in medicine comes in the form of digital photography. While Evan was sleeping off the heavy dose of drugs they gave him for the MRI, the nurse called the digital lab to request a copy of the scans for us. We walked to the lab on our way out and the CD was waiting for us!

Of course, we came home and popped the CD in a computer to look through all the images of Evan's brain. It's amazing to see. In November, Dr. Weiner told us that the opening left from the abnormal tissue he removed would fill with brain fluid and the brain may even spread out a little to fill the space. If a lot is removed, there will still be extra fluid and we lovingly refer that that part of Evan as Lake Weiner. Although after looking at the MRI images, it may be more like a river or stream, check it out...
You can clearly see the horizontal-ish white area where Dr. Weiner removed all the nasty bits. Evan also has metal plates on his head and I think one of them can be seen in the uneven area on the outer surface at about 8:00. Again, this is Rob's and my MRI report, so take all of this with a grain of salt!

If you are geeky like me and want to compare to the MRI done right after surgery, you can see it at this old blog entry:

Medical Maze: Brain Invasion

Overall, Evan did really well today, although he had some anxiety about being at the hospital. He was afraid he was going to have another surgery and even Aria was concerned that we wouldn't be home tonight. Clearly, we have to do a better job with our explanations. Evan seemed much better once he was convinced this trip didn't involve surgery and started noticing that he was hungry. We told him he could have a popsicle after he woke up from the sedation and the boy never forgets anything -- as soon as he opened his eyes he said, "Can I have a popsicle now?" What a trooper!

SeizureTracker.com has launched!

2008-02-23T21:05:00.008-05:00

Rob and I have been working on a passion project for months and it's time for me to take a minute to brag. We launched a website to help people living with epilepsy. The site provides a free, interactive way to log seizures, medication dosages and doctor appointments online. After entering information, a report can be created with a graph to show the number of seizures against the current medication levels. The report can then be printed out or emailed directly from the site. It's really a powerful tool and we are excited to have launched it! The response so far has been positive from both people using the tool and doctors viewing the reports. In the three months since we (very quietly) launched the site, over 200 people have set up accounts, logging close to 5,000 seizures.

www.seizuretracker.com
check out the sample report!

When we learned Evan was having seizures, one of the neurologists we visited gave us a piece of paper with a calendar containing 365 boxes to track a year's worth of seizure activity. With the frequency of our son's seizures, it wasn't long before the sheet of paper was a jumble of numbers, notes and highlighted codes. We started looking for an online tool to organize all this info and when we couldn't find one, we started working out a plan to create one. We quickly realized the application could be helpful to other families as well, so we began thinking of how to satisfy our needs while expanding our thought process to cover a broader spectrum.

Rob has worked tirelessly to build the site and I am very proud of the end result and of him. For the last year I haven't seen much of him once the kids are in bed as he works into the wee hours, making improvements and adding functions to the site. It is his dedication that has really made this happen. I can't help thinking it was Rob's way of finding something positive to direct his energy toward since he couldn't stop Evan from having seizures. I came across a quote that made me think of Rob and his unyielding focus:

"If you don't like something change it; if you can't change it, change the way you think about it." ~Mary Engelbreit

My biggest role in the development of seizuretracker was quality assurance testing. I logged Evan's seizures and looked for bugs in the tool. I was basically the chief complainer, pointing out things that were broken or frustrating from a user perspective. We've had a lot of people who have also helped us make this launch happen. Rob's brothers, Chuck and Rich, have both offered technical guidance, often saving Rob from spinning in circles when he couldn't figure something out. Our friend, Sally, did the design work and really blew us away! We just love the visual ideas she came up with. There have also been quieter helpers: our parents and Rob's sister's, Mary & Becky, who have all helped watch the kids so Rob could steal away to the computer or attend meetings. I have to admit, there are some untapped resources out there among our friends and family who we haven't reached out to yet, but you know who you are. We just hope you don't screen our call when you see the number on your caller ID!

Imagination

2008-02-08T20:52:00.000-05:00

One thing we've noticed since Evan's surgery is that his imaginative play has really increased. Our theory is that his brain isn't seizing anymore so he isn't as tired. The areas we've noticed the biggest impact are his imagination, focus and verbal pronunciations.

Evan always had a good imagination and our house has always been filled with characters only he can see, but now we have to open the front door to let them in and interact with invisible birds and monkeys on a daily basis. They all have names and they are all "so cute". Sometimes it's a cartoon character from TV, but often the imaginary friends are animals and a LOT of them are named Thomas, after Thomas the Tank Engine.

Now that Aria is in elementary school, her view of the world is a little more serious and she is starting to dislike playing along with Evan's imaginary world. At dinner the other night Rob and I got a big laugh at their exchange:

Note to people without kids: "Super Why" is a new kids show and the characters (one of them is also called Super Why) are super heroes that help solve problems.

Evan: (on his invisible telephone) Hi...Super Why?...yeah, can you come over?...ok...so you'll fly right over?...great, bye.

Evan: (to the family) Super Why will be right over.

Aria: You know Super Why isn't real though, right?

Evan: Super Why is real!

Aria: No he's not.
Evan: Yes he is.
Aria: No he's not.
Evan: Yes he is.
Aria: No he's not.
Evan: Yes he is.
Aria: No he's not.

Evan: Hold on.
(Evan picks up invisible phone and dials)

Evan: Hi, Super Why?...yeah, are you real?...oh, you are real?...great, thanks.
(Evan pushes invisible button on invisible phone to hang up)

Evan: (to Aria) Super Why is real.

Aria shakes her head...can't really argue with that logic!

Genetics Panel

2008-01-26T00:03:00.000-05:00

A couple days ago we were contacted about being on a panel to talk to 1st year medical students at Georgetown Medical School about Tuberous Sclerosis. The person who was supposed to speak couldn't make it and our names came up. The only hitch was that it was the next day so we had to move quickly to get a speech together. Rob went and gave a 20 minute speech about TSC and our family's experience.

It was such an honor to have been asked and I'm so proud of Rob for doing the speech. I was bummed that I couldn't have been there too to cheer him on though. Rob was one of a handful of people talking about various genetic disorders and it's interesting that when you are dealing with a rare disorder, a parent or patient who has chosen to educate themselves about it knows more than the average general practitioner. I'm not saying this out of conceit, it's just what we've experienced. I am in no means criticizing doctors, I'm sure TSC is briefly discussed in medical school, but what is the likelihood of ever encountering it if you aren't specializing in an area that deals with it. There are about 50,000 cases in the US, but that's still a pretty small percentage.

Being part of a discussion panel of this nature is huge because TSC is a rare disease and every mention of it helps raise awareness in some niche of life. TSC has been mentioned on a few medical TV shows and every now and then a newspaper will do an article about a child with TSC who has brain surgery, but it is still virtually unknown. One day when I say that Evan has Tuberous Sclerosis I won't be met with a puzzled look, and that's when I'll know real progress is being made in terms of awareness -- and I know that day will come.

Poke, Prick, Prod

2008-01-23T23:02:00.000-05:00

Today was dedicated to running around with Evan to various doctor's offices. Unfortunately, they all involved poking and prodding so it was a rough day and Evan was less than happy by the time we were through with everything.

Evan is still wearing AFOs (short braces) on both feet and will continue to wear them for a while to make sure his bones in his feet form properly. We saw a lot of improvement physically in this area after surgery but not enough of a miracle to toss the braces yet. He does a lot of bad habit compensations and is really good at it. Half of the cute sitting styles he has are compensations for balance issues. Thank goodness he has great physical therapists! Since he is growing quickly, it was time to be fitted for new braces. This sounds simple enough, but it involves casting both feet. In previous visits this has culminated in wails that rock the building, so I wasn't looking forward to this appointment. He surprised us all with how well he handled the casting. He was visibly stressed about it but didn't even shed a tear. Whew!

That went well, but the next stop was a lab to get blood work done. We think Evan's Trileptal level may still be too high, so Dr. LaJoie wanted to get that checked as soon as possible. Evan has been to too many labs, remembers being in them and will slip into hysterics when we walk in the door, so this is a bit tricky. Our new theory is to never use the same lab twice. We're going to be driving to Maryland for blood tests soon! He really did well with the blood draw but was crying quite a bit and of course I had to hold him firmly so he didn't move him while they did it.

The final appointment was a well child visit with Evan's pediatrician. At this age well child equals immunizations and I had completely forgotten about that. Aria had her well child visit today too, but she won't need shots for a few years. This one was by far the hardest appointment of the day. I was holding Evan as he begged the nurse, through tears, not to give him shots. I looked at Aria and she was cowering from the experience of watching her brother. I asked her if she wanted to step out of the exam room which of course she did -- I wanted to too. I held Evan in a restrained position again as he sobbed and the nurse poked him as quickly as she could.

We left the office with stickers, lollipops and a toy for each of them. Dr. Hoang felt so bad for Evan that she came out and gave him a hug and a toy before we left. Not being one to shy away from a reward based system, we also had an outing that resulted in a new train for Evan and a ladybug habitat for Aria. It didn't make me feel any better though. I was definitely the bad guy today -- luckily the kids don't seem to see it that way. Not yet at least, it'll surface in therapy years from now!

$4 Million for TSC Research in 2008

2008-01-10T22:36:00.000-05:00

Our contribution to a congressional lobbying effort paid off! Last year Rob and I were part of a group lobbying Congress to raise funding for Tuberous Sclerosis Complex (TSC) research for 2008.

We visited several Congressional offices and told our story while trying to impress upon the staffers (it's rare to actually get an appointment with a Congress Representative, but the staffers have their ear) how important TSC research funding is. This is a little tricky because you have to begin with a definition since most people have never heard of it. About 50,000 people in this country have been diagnosed with TSC so it is relatively rare. Interestingly, that's about the same number of people diagnosed with Lou Gehrig's Disease.

It was a long haul, but in the end, $4 million was provided to the Department of Defense Tuberous Sclerosis Complex Research Program. The money will be used to promote innovative research focused on lessening the impact of TSC. This program is administered by the US Army Medical Research and Materiel Command through the Office of the Congressionally Directed Medical Research Programs. It's so interesting to see where funding originates.

I am so happy to know that there are strides being made and am proud that Rob and I were able to take a stab at being lobbyists. There was no funding approved for 2007, so $4 million for 2008 is a huge step in the right direction. Nobody should have to live with this debilitating condition.

Genetic Testing

2008-01-09T20:40:00.000-05:00

Evan is now a card carrying member of an exclusive club, the TSC1 Gene Mutation club. It is VERY exclusive but not necessarily one you'd want to join.

When Evan was in the hospital last month he had a genetic test done and although we've known for a while that Evan has Tuberous Sclerosis Complex (TSC), we didn't know, until now, which gene is involved. There are two genes that have been isolated as causing TSC when a mutation occurs, TSC1 & TSC2. The main function of these genes is to suppress tumor growth, so if one of them isn't working properly, all sorts of issues can arise. The gene mutation is dominant and can be inherited or random. We think Evan's is random because for it to be inherited, Rob or I would have to have TSC, and neither of us have any symptoms. This also means Evan has a 50% chance (remember your High School Biology section on genes?) of having a child with TSC if he decides to have kids -- a long time from now.

The gene mutation happens in utero, so people are born with it and symptoms occur at different times in life, depending on what areas of the body are affected. The most common areas for tumors to form are: brain, kidney, heart, skin & eyes. Evan had three in his brain, all of which were removed and a small tumor on one kidney. As horrible as that sounds, he really got lucky that this is the extent of the involvement. Along with the tumors often comes autism and epilepsy and Evan only has the epilepsy. We are hoping Evan's epilepsy will continue to be inactive after Dr. Weiner worked his magic in the OR!

So I guess the genetic results are informative, but it really doesn't change anything in terms of his treatment. Not yet at least. It's a huge scientific step to have isolated the genes, so maybe one day something can be done to find a cure and/or keep people from getting TSC at all.

Back to School

2008-01-03T23:03:00.000-05:00

Evan is officially back to school. Before the winter break he started going one day a week at a Fairfax County preschool where he'll get PT and yesterday he went back to his other school. His teacher made a sign that said "Welcome Back Evan" and said it was as if Evan was never gone. He did really well in the class and had a great time.

Evan is doing really well overall and is back to driving his sister crazy, so I'd say all is well. It's really fun to watch the two of them together and they really do share a strong connection.

Happy New Year!

2008-01-01T20:50:00.000-05:00

It's been a crazy year and although I can't say 2007 was horrible, we don't want a repeat of it. We had a lot of great things happen throughout the year but all of it was peppered with seizures, lots of seizures. Ending the year with a seizure-free Evan is absolutely fantastic and a trend we are all looking forward to continuing!

Evan is doing really well and is continuing to improve every week. He's starting to give us a run for our money and if he decides to take off, we actually have to pick up the pace to catch him. He's a really funny kid and has us laughing all the time with his antics. It's amazing to see how much more verbal and focused he is after the surgeries.

Aria continues to impress us with her ability to take everything in stride. She is a really great big sister to Evan. She seems much older than she is when we sit back and just watch her interact with him.

As for Rob and I, we are just happy to have two healthy kids. We are all battling colds, but I'd take that over seizures any day!

PT, PT and more PT

2007-12-18T19:59:00.000-05:00

Physical therapy is the name of the game now. Evan has PT four times a week and his therapists are working him hard. He thinks he's playing, and that's pretty much the only way it'll work with kids. We've seen a lot of good progress and he improves in some area every day. He's still not as steady as he was pre-surgery, but we expect him to get back to where he was at a minimum. We are hopeful that he will surpass his prior goals, but we're all taking it one day at a time.

Watching Evan reminds me of when he was learning to walk and everyday there would be something new. We've watched him go through those milestones all over again: wobbly steps, standing up with assistance, walking with confidence, managing stairs, standing up independently, running, etc. He's still pretty wobbly when he runs and has a lot of strength to regain in his legs, but he has a lot of energy and that works in his favor!

We're Home!

2007-12-13T23:16:00.000-05:00

We are home and so happy to be back. Aria and Evan were really excited to see each other and it was so cute to see them together after being apart for a week. It is so cool to see the close relationship they have and it makes us feel so proud.

Being in the hospital is such a surreal experience -- life just stops and everything revolves around when doctors make their rounds, medical tests and hospital activities. Night and day blend and you completely loose track of the day of the week. You bond with strangers going through similar and different experiences at the hospital.

Since we were just in the hospital, Evan got lots of visits from PICU nurses and they all made him feel so special. There really is something special about someone who chooses pediatric nursing as a profession. We have met too many nurses, but the ones who work with kids are really special people who probably never even know how significantly they impact their patients.

We are again thinking about how fortunate we are to have such a strong support network, and although we're ready to not need it, we are so thankful! Uncle Chuck came through again (as always) and hung out with Aria while we raced off to NY. She may be ready for us to leave again since she's pretty much gotten her way all week -- she really had a blast with him!

Our phones have been ringing a lot and we appreciate all the calls and emails. Hopefully when we get a couple decent nights of sleep we'll be able to catch up with everyone. Evan is doing well again and we are looking forward to putting all this behind us and only going back to NYU Hospital for scheduled visits!

Toxic Evan

2007-12-12T21:32:00.001-05:00

This week has been a whirlwind we didn't expect, but we're so glad to be at NYU Hospital to get everything sorted out. The big news is that Evan is toxic and in this situation, that is good news. Dr. LaJoie suspected it and the tests confirmed it. Basically, he processed the meds differently than they would have expected. When he left the hospital after surgery his level was 9 (a little low) and they raised the meds a touch to get it up a little. For whatever reason, the level skyrocketed for him. Dr. LaJoie was expecting the level to be around 18, indicating it was a little high and it came back as 30! That made a diagnosis pretty clear and we have begun the process of reducing Evan’s meds. This means the seizures were provoked (by meds) and that is great news. We’ll be in the hospital a little longer and hopefully when the meds are worked out we won’t see any more seizures.

The hospital is really busy with epilepsy patients this week and they are diverting patients to other hospitals, so we’re just happy we were able to get in. Dr. Weiner told us he had to cancel two surgeries this week – I can’t imagine getting that call! Unfortunately, there wasn’t a room available that is hard-wired for the Video EEG machine so they had to bring the VEEG equipment into the room. Being in a hard-wired room gives you the freedom to unplug and walk down to the playroom and plug into the wall there to continue to be monitored. Evan was starting to get a little punchy sitting in bed all day, and we moved to a hard-wired spot this afternoon and he was happy to get to move around a little more and go to the playroom.

Luckily, Evan has been in a pretty good mood and that really makes things easier on us! He likes being naked and doesn’t want to wear anything so he’s been hanging out in a diaper (we’re back to the drawing board with potty training since surgery). I thought I’d share this photo from last night of Evan multi-taking: VEEG, playing with trains and watching TV. Now all he needs is someone to fan him and feed him grapes!

We finally got him in clothes today – you can’t walk around the hospital naked! At least that's what we're telling him! Things are looking good and we're waiting for the news that we can go home.

Evan's Back in the Hospital

2007-12-11T16:59:00.000-05:00

Today I am writing with a heavy heart. On Sunday, Evan had three seizures and then had two more on Monday. The seizures were a little different: longer, with dizziness and vomiting and complete exhaustion afterward. We talked to Dr. LaJoie on Monday morning and she wanted to hook him up to a video EEG in the hospital so we quickly packed a bag, called Chuck to ask him to stay with Aria, went to Aria's school to let her know what was going on and headed toward NY.

We arrived at the hospital at 3:30 pm and were in his room on the Pediatric floor within an hour. They drew blood to check medication levels among other things. Next, Evan had a CT scan to make sure everything still looked good from a surgical perspective (it does). Finally, at around 10:00 pm the EEG leads were on and he was hooked up to video. Evan was up until around 11:30 pm and seemed to feeling pretty well. We haven't seen any additional seizures, so we're just watching him for the time being.

After we got set up in the room, Rob went to the PICU to say hi and a few nurses came over to the main floor to see Evan. He has a lot of friends in the hospital! Sadly, there are families we left behind who are still here, but we were happy to see that the little girl we shared a room with in the PICU is awake. She arrived a few days after us and was seizing nonstop. The doctors basically put her in a medically induced coma in the effort to calm her brain down. We were so happy to see her awake and get a glimpse at her beautiful brown eyes. They will still be here over Christmas but they are hoping to take out her breathing tube today or tomorrow and her mother will hold her for the first time in over a month. This sounds so sad but it is really happy news.

A steady stream of doctors came in to see Evan this morning. Evan's neurologist, Dr. LaJoie, thinks there is a good chance that Evan is seizing due to the Trileptal he's on. Medications effect everyone differently and when the level is too high it is considered toxic. There are set levels known to cause toxicity, but it's also possible that the drug is toxic at a lower level for Evan. The bloodwork results should be done by Thursday, but until then, Dr. Lajoie will treat Evan as if he is toxic and begin adjusting the meds a bit. She feels the symptoms we're describing point to toxicity and we're hoping that is the case.

For the time being, we are settling in for a somewhat extended stay in New York. Evan will be in the hospital at least until Friday. Last night Rob and I both slept at the hospital but a social worker here arranged to get a room for us at the Ronald McDonald House in Manhattan. Usually the Manhattan Ronald McDonald House is reserved for cancer patients, but they had space available so we got lucky.

Our current challenge is trying to find a place that will deliver a decent cup of coffee! Our runners (AKA Chuck and Becky) aren't here so we're on our own! Coffee isn't a problem, it's cappuccino -- all the delis have the machines with the push button cappuccino and we're looking for the real deal!

I'll update when I can, hopefully with good news!

Two Week Post Surgery

2007-12-04T22:30:00.000-05:00

It has been two weeks since Evan's final surgery and he hasn't had any seizures (knocking furiously on wood) and is doing really well overall. He still has a decent amount of weakness on the left side but he's getting stronger every day. He has a lot of trouble with stairs and still can't stand up unassisted if he sits on the floor, but his train table has offered him a ton of PT opportunities he isn't even aware of. He stands at the train table, walks around it, reaches across, bends over when he drops trains, etc. Evan doesn't know it, but his passion is going to heal him -- body and spirit.

If anyone asked me to define myself in one word, I would choose "optimist". This is my gift and my curse. My gift because I can almost always see the up side of any situation and can turn any insult into a compliment. My curse because I don't like to admit when things are really rough. I never want to come across as a whiny complainer and it isn't productive anyway. I will say though, the three weeks we spent at NYU Hospital were the hardest weeks of my life. Every day was hard, each for a different reason. We were challenged as a family in ways we could have never expected and are so blessed to be surrounded by so many people who have offered support in many ways. I've said it before, but want to say again, thank you.

Chickens Dig Scars

2007-12-02T21:05:00.000-05:00

We are back home and thrilled to be here! On Friday morning we had an appointment with Evan's surgeon, Dr. Weiner, and we flew home in the afternoon. We had been coaching Evan to say "Chicks dig scars" but instead he said "chickens dig scars". I guess to a 4-year-old the two sentences make about the same amount of sense. We can't take credit for the phrase though...before we went to NY for Evan's surgery, Andrew told me to tell Evan, "scars are cool and chicks dig 'em". Apparently what Andrew didn't know is that chickens dig scars too. Go figure! If you don't believe me, just ask Evan.

We haven't seen any seizures since the surgery which is really tremendous. We're hoping things continue in this way! When we were in Dr. Weiner's office, we asked Evan what he thought about Dr. Weiner taking his seizures away and he said, "That's cool...Dr. Weiner, I think that's a good magic trick!" We think he's right, it is a pretty good magic trick, but no smoke and mirrors for this one -- just pure magic!!

Belly Boy

2007-11-29T20:40:00.000-05:00

I know I've mentioned how much Evan is eating, but I thought I'd offer up some visual proof. He has gained 5 lbs. in the last week and a half -- that's almost a 20% increase in his weight! I snapped a few shots today with my camera phone...

You don't get cheeks like this eating carrot sticks, although he eats those too!

I call this his bowl full of jelly.

We used to have to cinch all the waistbands of his pants and they still fell down, now nothing fits! His last steroid dose is tomorrow so I'm guessing things will start to get back to normal in a few weeks. For now, we just laugh and feed him -- he's so hungry!

As you can see they didn't shave his head for the surgery, just the incision line. The scar itself is pretty big but is healing well. I may post photos in a few days for the gruesomely curious, like myself. I was a little nervous about seeing Evan's head for the first time but it actually looks much better than I expected.

We'll be home Friday night!

2007-11-29T19:48:00.000-05:00

New York has been a surreal and amazing experience, but we are all really looking forward to being home tomorrow night. We'll meet with Dr. Weiner for a follow-up appointment and fly out in the late afternoon. It'll be bedtime by the time we get home, but that doesn't matter, we'll be home!

We've learned a few things being in New York for 3 weeks, mostly involving food:
--There is a lot of good pizza and a lot of bad coffee in the city, you have to know where to go.

--You can have your dirty laundry picked up at your door and returned clean and folded by the end of the day. The huge bonus is that it's only a few dollars more than doing it yourself at a laundromat.

--You can have a grilled cheese sandwich delivered to your door from any Deli at any time -- we seem to hit the 5am slot.

--At the pizza shop you can just ask for "a slice" if you want cheese only, no need to put in extra descriptive words, like "cheese".

--McDonald's will deliver if you order a minimum of $20 -- I guess this is good?

--We never found a restaurant that doesn't deliver -- this is definitely good!

--If a cabbie honks at you while you're crossing the street you're fine; if the cabbie doesn't honk, pick up the pace or you may get hit.

--City kids are afraid of dogs and people are shocked that Evan isn't scared at all by them.

--And most of all, New Yorkers are really great. We have met so many nice people while we've been here! I'm sure there are people here who fit the New York stereotypes, but we honestly haven't found that to be the case. I'm so looking forward to going home, but there is a part of me that will miss New York.

EEG & Follow-up Appointment

2007-11-27T22:25:00.000-05:00

Today Evan had a quick EEG and an appointment with his neurologist, Dr. LaJoie. The EEG looked beautiful and calm with no crazy brain wave action going on. An EEG is just a snapshot of his brain activity during the timeframe of the EEG, but the fact that there were no unusual spikes is a great sign.

After the EEG, we met with Dr. LaJoie, and she was astounded by how incredibly verbal Evan is. He's always been very social and verbal, but nothing like this. The past week or so Rob and I could barely get a word in. We don't know if it's the drugs or if the surgery unlocked something, so we'll wait for the steroids to be out of his system and see. The appointment with her went really well and she was happy with his progress. We'll be back up in NY in a few months for a 2-day Video EEG in the hospital to see the results of a longer test, but we haven't seen any seizures since the surgery and Evan said he hasn't had any. Nothing but good news and we're hoping it stays that way. We couldn't be happier.

Feed Me!!

2007-11-25T21:37:00.000-05:00

Feed me Seymour,
Feed me all night long.
'Cause if you feed me Seymour,
I can grow up big and strong...

--Audrey II, The Little Shop of Horrors
Feed Me clip on youtube.com

The steroids have hit Evan full force and he's HUNGRY. This is not some off-hand comment that Evan is hungry. It's like he is possessed by a 300 pound man who hasn't eaten in a week. The boy eats until his stomach is so full his belly button changes from an "innie" to an"outie" and then asks for more food. It's crazy, like nothing we've ever seen. Then his stomach hurts -- duh! The obvious solution is to limit his food intake to save him from himself, but hello steroids! He goes from hungry to mad and hungry and it isn't pretty. The up side is that we are in New York and every restaurant here delivers, even McDonald's if you have a $20 order!

Todays eating fest began at 6am with a grilled cheese sandwich and some left over chicken nuggets. It wasn't long before he needed another grilled cheese sandwich. At 10am, Evan wanted lunch at McDonald's but they don't serve lunch until 11:00. That delay wasn't pretty! We left the apartment at 10:30, hitting Starbucks before we showed up at McDonald's at 11am prompt. Food is the instant mood mender for Evan so he was immediately happy when he saw the golden arches. After gobbling up all his chicken nuggets and fries we had this conversation:

Evan: I'm full.
pause
Evan: Maybe I'll have just a few more french fries.
Evan eats two fries
Evan: I'm hungry!
Me: You just said you were full.
Evan: No I didn't, I'm really hungry.
Me: Are you sure? Your belly looks really full.
Evan: No it isn't. I have an idea: maybe you can ask them if they have more chicken nuggets and they will say, "yes". Is that a good idea?
Rob: We might try to find you something healthier than McDonald's.
Evan: Hmmm, maybe I'll have a grilled cheese sandwich instead.
Rob: You want to go back to the apartment to have a grilled cheese sandwich?
Evan: No, I want to eat it here.
Me: McDonald's doesn't have grilled cheese.
Evan: Yes they do.
Me: They have cheeseburgers, but no grilled cheese.
Evan: OK, I'll have a cheeseburger.
Rob goes to buy a cheeseburger

Pretty much every conversation with Evan goes this way and although it's sometimes hard (like when the food takes a while to arrive) there is a side of it that's funny. So, in the end, we just let him eat but try not to let him gorge himself too badly.

Freedom!

2007-11-24T20:35:00.000-05:00

They released Evan from the hospital yesterday!!! We are so happy not to have to sleep there anymore, but we may go back to visit in a few days when Evan has a follow up appointment. We thought the doctors would discharge Evan today, but he wanted to leave so badly they gave in and let him leave a day early. Dr. Weiner wants us to stay in town for a week just to make sure everything continues to go well before we leave town, but we will be making our way back home soon.

When Evan was discharged, Chuck, Roman and Aria were still in town, so we all crammed into the studio apartment last night and had a great slumber party. After Aria and Evan were in bed, Chuck hung out with the sleeping kids at the apartment and Rob and I took Roman to the observation platform of the Empire State Building. It was a great view of NY at night, but probably someone smarter would have done it in the summer -- it's really cold and windy on the 86th floor in November! It really was breathtaking though and well worth it. By the time we got back to the apartment, Rob and I were zombies but Roman seemed like he could have kept on going. I vaguely remember being 16!

This morning Rob took Roman and Aria to the museum to check out the Egyptian area and all the suits of armor. They all came back smiling and seemed to have a great time. Chuck, Roman and Aria took the train back to DC this afternoon, so things were pretty quiet after that. It was sad seeing them leave but wonderful to have them up here for a few days.

Evan is still pretty wobbly when he walks but we get him walking often so he can build his muscles back up. We have been holding his hand when he walks and each time he looks like he has regained a little strength. We think he'll need more therapy than what he usually gets for a little while in order to get back to his pre-surgery form, but we are definitely seeing physical improvements we never expected. Evan is curling his left toes and he never could before and when he walks barefoot, he doesn't look like he's dragging his left toe like he used to. The best news is that we haven't seen ANY seizures! We're hoping Evan's progess continues in the same direction and we couldn't be happier.

Happy Thanksgiving!

2007-11-22T22:11:00.000-05:00

Today, the hospital catered a Thanksgiving feast for everyone on the pediatric floor and we all (Evan, Rob, Aria, Roman, Chuck and me) joined in the festivities. It was great to get Evan out of his bed and he spent about two hours at the Thanksgiving "party". He also walked for the first time after surgery! He’s wobbly, but he’s been in bed for almost three weeks and was stoned on morphine at the time. Afterward, he was really wiped out so we brought him back to his room where he took a seven hour nap. It's my night to sleep at the hospital, but I have a feeling there may not be a lot of sleeping going on. I hope the nurses are ready to be entertained!

The best news is that we haven’t seen any seizures and our plan is to continue on this path. It also looks like he has a little greater range of movement in his left foot. Maybe Rob and I are imagining it, but it sure looks like there is some improvement there. Prior to surgery, Evan had a slight weakness in his left leg, but it would sure be great if it's even less! This can happen after an epilepsy surgery but it's never expected, just a bonus if it does. We're looking forward to seeing him walk again tonight and can't wait for his therapist, Flavia, to do a post-surgery evaluation.

I have to say, this is the best Thanksgiving we have ever had. I would never choose to be staying in the hospital for a holiday, but the fact that Evan had his last surgery just before Thanksgiving seems very symbolic to us. There are so many things we are thankful for and Dr. Weiner’s skilled hands are at the top of our list this year. We are also thankful for the care Evan has gotten at NYU Hospital – everyone here has been amazing. We feel fortunate to have such a strong support network of family and friends who have been with us through a lot of challenges. People often ask us how we manage everything and the real answer is that we don’t do it on our own -- somehow we have managed to surround ourselves with a lot of fantastic people who probably have no idea how much they have helped us at various points in this process.

Right now I am thinking how fortunate we are and what a charmed life we have. Evan just had three major brain surgeries and he is doing amazingly well, but there are other kids around us who are still struggling and my heart goes out to those families. You develop bonds and relationships with people in the hospital and everyone pulls for each other and cheers when kids get well enough to go home. I'm glad to say we've seen a lot of kids get discharged and we're so happy for the families who leave us behind and we're eager to follow.

Third & Final Surgery Complete!

2007-11-20T22:12:00.000-05:00

Evan's third surgery is complete and everything looks good! He's moving everything and talking, so that's a great sign that his motor strip is still intact. He's also asking for food and mad that we won't give him any -- we'll take both of those as good signs too. After anesthesia, the stomach is the last thing to wake up so if we give him anything to eat it'll probably just come right back up.

Dr. Weiner said the surgery was pretty dramatic and he removed about as much as he did on the last surgery. All the tissue he removed was abnormal and was the focus of the seizure activity we've been seeing this week, so he feels very good about the success of the surgery.

Right now Evan is sleeping and I'm hoping he doesn't wake up until his stomach does because it breaks my heart to tell him no. He didn't go to surgery until about 4:30 or 5:00 tonight, so it was a long day without food. He napped off and on before he was brought downstairs to the OR and when he woke up we all tried to entertain him to distract him from his hunger. We went through our repertoire of songs and drew a train on Aunt Becky's tummy with markers. Evan scowled through that, but we thought it was funny. Becky was a riot making the train move by rolling her stomach.

I'm going to go back to Evan's room now to watch him sleep. I remember bringing him home from the hospital after he was born and just watching him sleep for long periods of time. There have been many times here at the hospital that have reminded me of those early days. Evan looks peaceful and comfortable and I'm hoping he's feeling well and in good spirits in the morning.

Final Surgery Tomorrow, 11/20

2007-11-19T21:34:00.000-05:00

I'm am very happy to say that Evan's final surgery has been moved up a day, so Tuesday, 11/20 is the big day. We are glad to be able to move things up a little even if it is only a day. I have to say, it is great to be on the final stretch. Dr. Weiner feels really good about the final surgery and sounds confident about the outcome. We are confident too, but from the sidelines.

At the moment surgery is scheduled for sometime around noon, but Dr. Weiner will be in early in case an OR space opens up early. He said he'd be pacing until he gets in the OR. He seems excited to do the surgery and it's cool to see him so passionate about Evan's case. He really is a great man, in every aspect.

Waiting for Surgery

2007-11-18T16:21:00.000-05:00

We only have a few more days to get through until Evan has his last surgery and we're ready. Evan is somewhat moody from the steroids, his head itches from the wrapping and he can't get out of bed because he has hardware in his brain. After the next surgery, he will return to the PICU for a day or so and if all goes well will be moved to the main pediatric ward quickly. Once he is out of the PICU, he'll be able to move around and go to the playroom. As long as he doesn't hit any snags he'll be checked out of the hospital a few days after that.

The doctors all feel confident about the surgery and we are still feeling optimistic about the results. As my mom said, we only need one miracle.

Having a steady stream of family here has been a huge help. Chuck was here first and created a good rhythm of starting us off with strong coffee and doing runs for whatever Evan wanted. Debbie G. came for a visit on Evan's worst day, but it was great to see her and she stocked me with trashy magazines -- I know all about Britney's issues, the tell-all book Tom Cruise is nervous about, the rumors about Angelina Jolie's pregnancy and the latest drama on Dancing With the Stars! Bob and Beth brought my mom and Aria to NY on their way to visit family and it was really great to have them with us. This is a hard place for Aria to be, but I do think it was good for both her and Evan to be together for a few days. We didn't feel like we had any quality time with Aria or my mom but having them here was wonderful. Rob's sister Becky came the day before my mom and Aria and she just extended her trip a few days, so we still have a runner for Evan and she does jumping jacks and crazy dance moves to make him laugh. I like it best when he holds out to laugh to see how far she'll go!

After Evan's surgery, Chuck is coming back up with Aria and our nephew, Roman. They will all be here for Thanksgiving and in spite of where we'll be, I think this will be the best Thanksgiving ever. It will be the beginning of a whole new existence for Evan.

Brain Invasion

2007-11-17T22:15:00.000-05:00

Being visual people, Rob and I always get copies of Evan's MRIs and look at them with our untrained eyes. It used to be we had no idea what we were looking at, but Evan's most recent MRIs are pretty dramatic and it's pretty easy to find what we're looking for. Since I have the CD of MRIs, I thought I'd share these really freaky pics of Evan's head...

After the first surgery, Dr. Weiner inserted a depth probe to about the middle of Evan's brain, where the two sides divide. He inserted grids on the surface of the brain too, but the depth probe goes in much deeper and has 8 points on it that collect seizure info. The advantage is that it is getting information from deep inside Evan's brain instead of from the surface. This was extremely important in Evan's case because Evan had three tubers in this area and Dr. Weiner was able to put the probe through all three. The probe ended in the tuber deepest in and this is where the seizure activity was originating in Evan's brain. Up until this trip, every doctor thought the seizure activity was coming from the largest tuber closest to the surface. The image below is of the depth probe in Evan's brain after the first surgery. The white area close to the center of the brain (where the depth probe ends) is the tuber causing all the trouble.

After the second surgery another MRI was done and you can see the area removed in the image below.

If you look really close, you can see a depth probe on each side of the area removed. They go deeper than what you can see in this image and are picking up additional seizure activity. The final surgery will be to remove a little more brain tissue to eliminate the rest of Evan's seizures and remove all the grids and probes.

The crazy thing is that Evan is completely normal after having this much of his brain removed. His spirits are effected by all this brain invasion, but you'd never guess by talking to him or interacting with him that he just had two pretty major brain surgeries.

Evan is Charming the Nurses

2007-11-16T22:39:00.000-05:00

Today, I am happy to say, we saw longer glimpses of Evan's true personality. He spent several portions of today flirting with and charming nurses. When he's feeling ok, he's really funny! This morning, at 2am, Evan invited one of the nurses to go on a rocket ride to the Moon, but he told her she needed a space suit first, then he told her it was on backwards! I guess this was her first mission, because she forgot her helmet and then put it on backwards too. After she was suited up they blasted off and visited the Moon and Pluto.

Having Aria here has directly improved Evan's mood and I'm hoping it lasts when she leaves for a few days! She'll be back up here for Thanksgiving, but we don't want her to be here on the day of surgery, it's just too much waiting around.

We spoke with all of Evan's doctors this morning and they are seeing a decent amount of sub-clinical seizures (seizures with no visible signs) on the EEG, and all the seizures are all coming from the area surrounding where the tubers were. This is good because it means Dr. Weiner is getting a lot of clinical data which will help him fine tune what additional tissue needs to be removed. Also, there are no seizures coming from unexpected regions of Evan's brain. After the third surgery they will remove the grids and close everything up. Depending on how quickly Evan bounces back, he'll be moved onto the main pediatric unit. This can happen in just a couple days, but it's different for each person so we'll just have to see how he does. For the moment, Evan's surgery is scheduled for Wednesday, 11/21, but Dr. Weiner is hoping to do it on Tuesday instead. He'll have to go through some negotiations to get OR space, but we're hoping it won't be too hard with the holiday coming up.

MRI

2007-11-15T20:50:00.000-05:00

Today Evan had an MRI to get a picture showing the new placement of the grids Dr. Weiner put in yesterday. He couldn't eat because he needs anesthesia with MRI and that was pretty tough because he didn't get brought down for the test until 3:30. That's a long time for a hungry kid to wait to eat!

Evan knew Aria and my mom were on their way up for a visit (thanks Bob and Beth for bringing them up here!) and he was really looking forward to seeing them. When we knew they were close, we told Evan that Aria would be here when he woke up after the MRI. As he awoke, his first words were, "I want Aria". They really do have a special bond. Evan cried when he saw her and then was in really good spirits for the rest of the night. He requested McDonald's for dinner and Aunt Becky (who arrived last night to relieve Uncle Chuck) went running to do Evan's bidding. When she got back he was fast asleep.

The not so great news is that Evan is still having seizures. But the up side is that there is still one more surgery and Dr. Weiner will be able to remove more and hopefully end Evan's seizures once and for all. This is pretty typical with a three-stage surgery so it wasn't a complete surprise, but we were hoping Evan would be done! We should know more tomorrow after Dr. Weiner looks at the MRI and EEG data, but we do know the next surgery will be more involved than just removing grids.

For now I'm just happy Evan is in good spirits and still feel we are on the right track. Seizure eradication, here we come.

Our Son is a Rock Star!

2007-11-14T15:07:00.000-05:00

Evan is out of surgery and everything went very well!!! The OR was available earlier than expected, so Evan's surgery was moved up. We were glad to have him go in early because he was complaining about being hungry and it was nice to move things along more quickly for him.

After surgery, Dr. Weiner said he was really excited at how well everything went and he was beaming. He couldn't have been more encouraging. Evan woke up easily and was able to move everything and respond to commands. This is huge because a big concern was the possibility of a deficit on his left side and it looks like everything is exactly as it should be. We'll know more in the coming days, but so far everything looks good.

Dr. Weiner put the grids back in to do more monitoring and the final surgery is scheduled for 11/21. The last surgery gives him the option of removing more brain tissue if necessary, otherwise it'll be a quick surgery to just remove the grids.

I have to say that when we got to the OR I felt so good about everything that I wasn't even worried. It just felt right. Some people say moms have a special intuition when it comes to their kids. I don't know if that's true or not, but I just felt so good waiting for the surgery to be completed, not at all the emotion I'd expect to be feeling.

When I walked out of Evan's room to write this he was sleeping and Chuck just came out and said Evan is sitting up, eating ice and saying he's a rock star! I'm going to go see my rock star now.

Surgery is Tomorrow

2007-11-13T21:17:00.000-05:00

As I mentioned earlier, Evan produced a lot of seizures and the doctors got all the info they needed to move forward with surgery. The stars were shining on us and an OR space came available for Evan for tomorrow, Wed. 11/14. Evan will probably be brought downstairs for surgery a little after noon.

We are not a particularly religious family, but we really appreciate our friends and family who are. Evan has been put on a lot of prayer lists over the last couple years and there have been a lot of prayers going up the ladders of multiple faiths: Catholic, Jewish, Christian, Protestant, Mormon, Muslim, Hindu, Buddhist, Quaker, Lutheran, Sikh, Pentecostal, Greek Orthodox, Hasidic and probably some I don't even know about.

We just want to thank everyone for their prayers, well wishes, good vibes and positive energy in whatever form they come in. Please keep it coming, tomorrow is the BIG day!

We feel extremely confident about the surgery and I think tonight we saw our last seizure.

Still Grumpy

2007-11-12T13:41:00.000-05:00

Evan has moments of being in a good mood, but is generally grumpy. He asks to go home and continues to ask for Aria, but the good news is that Aria will be here next weekend. We've had offers to get her here earlier, but I think we're going to stick with the original plan because we don't really want her here the day he has surgery.

Evan's surgery is scheduled for Thursday, 11/15, but there is a chance they may do it on Wednesday, 11/14, instead. They have gotten all the clinical data on seizures that they need, so if they can arrange to get the OR they'll push it up a day. It's good news that Evan has been having seizures while we've been here because it gives the doctors a more clear picture of what to remove. There are kids who come in for this and have the first surgery, then never have a seizure and end up going home without going any further in the surgical process. I'm just glad we're not in that situation. We've heard more than once that Evan is following the textbook and we're hoping he keeps it up all the way to being seizure-free after surgery.

Yesterday was a little rough. Evan pretty much slept all day and then threw up a couple times in the evening. He was hard to wake up but his vital signs were good. As a precaution, they sent him downstairs to get a CT scan and after the test he perked right up and was pretty cheerful for a little while. The CT was fine and the nausea might be from the medication so they also gave him something to settle his stomach. One of the hardest things has been seeing Evan so sad and upset -- it's just so out of character for him. We find ourselves just waiting for those moments where he will smile or giggle. Then we sigh in relief, hoping it will last as long as possible before we have to wait again.

McDonald's chicken nuggets seem to brighten his spirits and Uncle Chuck has offered to go to McDonald's ten times a day if he has to! Evan also sat up and requested hot chocolate, so Chuck was off and running for that too.

Evan Misses Aria

2007-11-10T14:54:00.000-05:00

Today has been a little rough. Evan is having some pain from the surgery and his stomach is really bothering him. He is on steroids to reduce swelling and they tend to irritate the stomach so that's probably what's going on. This morning my mom called and Evan got to talk to Aria. We thought this would be great for him, but it ended up making him really sad. He spent the next 3 hours fluctuating between whimpering and actually crying because he misses Aria. It was so sad to see and Rob and I felt helpless since he latched on to the one thing we really can't do anything about. We can get him more morphine but getting Aria here instantly is a little tricky. She'll be here next week, so he'll just have to settle for the extra morphine for now!

He's napping at the moment and we're hoping he's in better spirits when he wakes up.

Finally he smiled!

2007-11-10T00:34:00.000-05:00

The doctors and nurses have been pleased with Evan's recovery and we have too, but it's been hard to see the expression of pain on his face for the past couple days. Today he smiled and actually spent about an hour this evening joking with us and being very animated. We were so happy when we heard him giggle for the first time. Evan spent most of the yesterday and today sleeping, but we think tomorrow will be "game on!"

Rob's brother Chuck came up to NY yesterday and it has been great to have him here. Evan has enjoyed having him with us and Rob and I were able to leave the room to look at the MRIs with the surgeon. It really is a huge help to have an extra adult in the room.

Evan had an MRI before yesterday's surgery and another one this morning. The purpose of the second MRI was to view the placement of the grids Dr. Weiner put on Evan's brain to map his seizure paths. We were able to seen all the grids on the MRI and it was pretty cool -- in a geeky, medical way.

Now we wait for seizure activity. The goal is to capture enough seizure activity through the grids to be able to give Dr. Weiner even more specific information about the area he will remove. So, this is the time we hope for seizures. The second surgery is scheduled for Thurs., 11/15, so if Evan is consistent, They'll have enough info by the end of the weekend to make a solid evaluation.

Dr. Golden Hands

2007-11-08T16:55:00.001-05:00

Thank you everyone for your posts to the blog, phone messages and good vibes! Evan had his first surgery today and everything went well. Dr. Weiner has done a decent amount of work in Italy and they have a nickname for him that translates to "golden hands". Can't ask for more than that!

Dr. Weiner said he was able to see the tuber he's going to remove and feels really confident about the next surgery. He expected this surgery to take about three hours and he was done in half the time! Evan was in his room at 3:00 and he's pretty wiped out and sleeping soundly so far.

That's the basic update, I'll post more later.

We're in NY

2007-11-07T19:17:00.000-05:00

We got up at 4:30 this morning to fly up to NY and although it was a bit stressful getting everything together last night, we were glad to have been here early. It gave us a chance to get settled and make sure everything was in order for tomorrow. It is, and Evan will be at the hospital at 6:45am tomorrow morning. He'll get anesthesia, have a MRI and then go directly into surgery. Whew. We are expecting him to be away from us for about 5 hours, so hopefully we'll have some info by 2:00pm about the first surgery. Wish him luck and we'll post when we can tomorrow.

ta-ta Topamax

2007-11-05T20:36:00.000-05:00

One of the things about shifting Evan on and off anti-epileptic drugs that always surprises me is the side effects we see, or more frighteningly don't see. It is not uncommon for a drug to have some seizure control for a couple weeks and slowly the seizures ramp up again. The drugs all effect him differently, causing sleepiness, aggressive behavior, insomnia, cognitive regressions or just a general dulling of his personality. The thing that makes it tough is that the changes happen slowly over time, so they are easy to miss.

When we notice the differences in Evan, we start wondering if it's the drug or a side-effect of the seizures themselves. Only when he comes off a drug do we really see clearly what the real culprit was.

We just completed a wean off Topamax and it's astounding to see how different Evan is now. I feel like we did him a real disservice keeping him on that one for as long as we did. He was only on it a few months but it really slowed him down mentally. In the last week we've seen him become much more engaged and talkative...actually he doesn't shut up now. He's creating imaginary games about going to the moon in his rocket ship and has his attention span back. He hadn't been playing with his trains as much and now he's at the train table for over an hour at a time. He's having long and involved conversations with us instead of one or two sentence conversations.

I'm happy to see our son's true personality is back, I just wish we'd pulled him off Topamax sooner.