Friday, May 14, 2010

For the Newbies

I thought that I should, primarily because so many other blogs I frequently read are smart enough to have this, create a brief summary (as brief as I CAN) of what this place is all about for those who might be visiting for the first time. If you are visiting for the first time...welcome.

As for me, my name is Ken Lilly. I was born in 1967 in St. Louis, Missouri but consider Baltimore, where I spent a great bulk of my existence, as 'home'. Currently I reside in Columbus, Ohio. Why? Because my wife, Jennifer, is from here, and this is where the bulk of her close family lives. We've been married since 2002.

We have an older son, named Carter Maximus, born in 2004. We also have a younger son, Bennett Leonidas, born in 2007. This blog started out initially as a hobby for me, something to pass the time since I enjoy writing and have been a part of online communities throughout my career as a Product Designer/Product Manager for various Toy and Collectibles companies.

It quickly morphed into primarily being a blog about my family, with particular focus on Bennett, our youngest boy, and his struggles with a Premature Birth, Epilepsy (Infantile Spasms), a Brain Tumor, Brain Surgery and Pervasive Developmental Delay: Not Otherwise Specified (PDD-NOS), a sensory/processing issue that puts him on the Autism Spectrum.

Here is a breakdown of the history:

November 10, 2007
Bennett was born. He was born 23 days premature. He had low blood sugar levels, a 'dusky' look, and had a difficult time breathing and so the doctors put him on a CPAP.

He was only on the CPAP for a few days, the rest of those first three weeks in the NICU were spent trying to teach him how to eat. Eventually, he did go home with us, and appeared to be a healthy, feisty newborn.

December 2007 - January 2009
His first year was fairly uneventful as far as anything going on in his life that would be considered scary. There were some odd behaviors I began to notice in the Autumn of 2008. Strange things he would do that I could not explain. Spinning in a circle, certain preoccupations with things, and sometimes just the way he looked at me.

It didn't feel right, and I would often tell Jennifer that I thought he was acting 'retarded' at times. This was before I even knew the first thing about whether that was a 'correct' term or not. It was the only term I knew. We often argued about this particular subject, as she felt I was over-labeling things that all infants do. And she was right to question me.

And that was because in every other way he was developing. He was walking before the age of 1, and he had a vocabulary of about a dozen words by the time we entered the first month of 2009.

February 11, 2009
Bennett received his 15 month DTaP immunizations. Up to that point he had received every immunization to date with no complications or issues other than a light fever.

February 12, 2009
Jennifer is at aerobics and I am watching the kids. At 7:44 PM I notice an odd behavior of Bennett. A sort of 'body hiccup'. I grab my video camera and start recording. I show it to Jennifer and we are both baffled by it. Never seen anything like it before.

February 20, 2009
Over that week only once or twice Bennett had the 'body hiccups', but as the week went on he seemed to be having them more often. We made an appointment with the Pediatrician and organized copies of the videos to take along.

February 24, 2009
After seeing the videos, which the Pediatrician had no explanation for, we had an EEG scheduled for as soon as we could get it. During the time between this appointment and his EEG, the frequency of the 'body hiccups' were increasing. We still had not connected the dots that these might be seizures.

March 5, 2009
Thursday morning, unforgettable, was Bennett's first EEG and the discovery of a type of Epilepsy known as Infantile Spasms or West Syndrome. That day, we were admitted to Nationwide Children's Hospital for immediate testing. MRI, video-monitored long-term EEG, and so on.

March 6, 2009
Results of the MRI come back and Bennett is diagnosed as having Cortical Dysplasia. We are offered a choice between two medicinal treatments to try to stop seizures. Prednisone and ACTH. ACTH, at 25K a vial, would have to go through an insurance approval, so obviously we chose to go with Prednisone immediately, which proved to be ineffective.

March 12, 2009
Bennett is admitted to the NCW again, this time to begin treatments of ACTH. They have to train you in hospital how to inject your kid with a needle. And to see if something dreadful happens in the first couple of days. Bennett was on ACTH for a while, but it also proved ineffective against the seizures. After an attempt a few weeks in to raise the dose again, it still proved useless, and we began to taper the drug.

March 23, 2009
Bennett has Topamax added to his drug regimen. Again, fairly ineffective in doing anything other than making him sleep a lot. We get shuffled from one doctor to another, and then another, at NCW.

April - May 2009
Lots of nothing happens in April. Treatments tried, treatments failed. Appointments made. Appointments CANCELED by the hospital with no explanation. In fact, so discouraged were we by the Keystone Cops approach to medicine that many of the doctors seemed to be practicing in the Neurology and Epilepsy departments at NCW that Jennifer and I decide to get a second and third opinion.

Sadly, the last Epileptologist we saw at NCW showed great promise, but by then it was too late. We just couldn't go back, we had to find someone to be the Quarterback for Team Bennett.

We begin to try to schedule an appointment to see a Dr. Chugani in Detroit and also a Dr. Lachhwani at the Cleveland Clinic.

June 4, 2009
We begin the 3-day inpatient visit at Detroit Children's Hospital. We have a PET scan done, a new MRI and a new EEG. Chugani confirms...sorta, the Cortical Dysplasia diagnosis. But he also says that it is inconclusive, since it is, to him, simply a mass at this point. He dropped the 'tumor' word in there but Jen and I both kind of shrugged it off because he did too as the data was not conclusive either way.

Chugani noted some un-explained PET Scan readings on the right side of the brain, though nothing conclusive could be made of that either. Chugani recommends holding off on surgery and trying more medications first. He prescribes Vigabatrin and Keppra, both of which ultimately fail.

As before, it didn't feel right when we got home. It did not feel like this new doctor had any more of a sense of urgency than the doctor's had shown at NCW. He was nice, he was polite, he was more aggressive than NCW, but we were still VERY unsatisfied. Naturally, as parents, we did not enjoy the trial and error process on our son. We wanted decisive action.

Meanwhile, all we could do as we waited for the appointment at Cleveland Clinic was watch Bennett have seizures and lose a ton of the abilities he had gained. It was one heartbreaking summer.

June 24 - June 26, 2009
We go to Cleveland Clinic for our first visit. Almost instantly, we were totally sold that THIS was the place he needed to be. We had an EEG and a meeting with Dr. Lachhwani, the Epileptologist who I could see from the very instant I met him that he really understood the urgency of things and he cared. We scheduled a battery of tests and planned to return within a few weeks to do them.

Meanwhile, he is still having seizures through all this time, and Lamictal is added as Keppra is taken away. He remained on Vigabatrin and Lamictal most of that summer, though neither had much of an effect and the seizure intensity and frequency slowly but surely kept increasing.

July 25 - July 27, 2009
New high-resolution MRI, long-term video monitored EEG, Neuro-Psychology evaluation, and some other testing was done in-patient at the Cleveland Clinic. EEG reveals no clear-cut focus to the seizures, though the suspicion is that this malformation in the left Temporal Lobe is the suspect. All the data gathered in this session and from the two other hospitals will be presented to a review board.

August 4, 2009
Although scheduled for August 24th, the doctors at Cleveland Clinic decided to push Bennett ahead for the review meeting and it occurred on the 4th instead. Why the rush? They explained it. They were convinced by the data that Bennett did not, in fact, have Cortical Dysplasia. They believed he had a brain tumor and suggested that surgery was not only the right path, but the sooner the better. We agreed.

August 18, 2009
Meeting with Dr. Bingaman, the surgeon who will be taking the tumor out. Alhtough he is a Steelers fan he was very engaging and informative. I have known a LOT of surgeons in my life, because of my Mom's career, and a lot of them are arrogant pricks. When they are NOT, you have one that you know is a good one. I liked him right away.

August 27, 2009
The surgery occurs. Both sets of grandparents come with, a few family members spend lots of time in and around the hospital, and one of my very best friends flies in from out of town to be by my side (more on that later...I STILL have not decided how to tell that story).

They think the tumor is a Ganglioglioma, vary rarely malignant and very rarely re-occuring, so we all breathe a sigh of relief, though they will have to wait until Pathology reviews it the following week. They go pretty deep into the brain to make sure they get everything and Bennett does very well physically in recovery.

August 28, 2009
At around 11:00 in the evening, recovering in the PICU, Bennett has another set of nasty seizures. Recovery continues.

August 29, 2009
Bennett has what will be his very last set of seizures in the evening. We did not know this at the time, so we kept looking for a long time afterward, but this was the last time he had a cluster of seizures. Recovery continues, and we are released from the hospital on Monday, August 31. We weren't even in there for a WEEK.

Can you believe that? Wild. Plan is to continue with the Vigabatrin and the Lamictal post-surgery, pain medicine and the like, but Bennett was healing very well, was very responsive and doing great.

September 4, 2009
We learn that the tumor was worse than they thought. It is a grade II Oligoastrocytoma, and it is something to be more concerned about. INSANELY rare in kids. Usually this tumor occurs in people in their 40's and 50's. The surgical team believes they got all of the tumor, but an appointment is scheduled with a Neuro-Oncologist so we can all have a plan for how to handle this long-term.

October 14, 2009
Follow-up at the Cleveland Clinic with Surgery and Epilepsy people, and meeting with the new Neuro-Oncologist joining the team. Surgery says he looks great, explains that his lack of speech could take a LONG time to improve. Maybe even a year or more. Epilepsy decides to let us begin a taper off of Vigabatrin (which we had actually already started on our own as we had concerns about vision loss), while staying on Lamictal as prescribed. Still no seizures for Bennett, though cognitively he struggles and his speech is all but gone.

Dr. Oncologist gives 30-40% chance that the tumor could return in the next 2-3 years. Plan is to have an MRI every three months. The first of these is scheduled in the first week of December. If it DOES come back it typically comes back in the same region, and the first reaction is surgical.

November 18, 2009
Bennett is evaluated extensively to see if his disabilities mentally could be categorized as Autism. Since surgery, all speech is gone, cognitive skills improve, although slowly, but there are tons of sensory issues, engagement issues, and the like. He is diagnosed officially with PDD-NOS, which stands for Pervasive Developmental Delay - Not Otherwise Specified. In short, he is on the 'Autism Spectrum' and will need a lot of therapy in order to try to guide him through those things which most kids learn naturally.

We apply for entry into a special school, called Step-By-Step Academy, and we do get in. But there is a waiting list, so he will not be able to start until 2010.

December 2, 2009
I celebrate my One Year Smoke Free Anniversary. Most people are stunned to the core, who know me and know how much I loved, LOVED, to smoke, that I have not picked up the habit in light of ALL that has happened in the past 11 months.

February 1, 2010
Bennett has his six month follow-up EEG, MRI and meetings with Neuro-Oncology, Neuro-Surgery and Epilepsy folks at Cleveland Clinic. They report his healing inside the brain is going well, no tumor regrowth that they can detect, though there is some odd reading in the right side of the brain. No one knows what it is. Surgery tells us to let it go, as it is likely just being read too critically.

February 15, 2010
Bennett begins attending Step-By-Step Academy. He receives 35 hours a week of ABA Therapy there, and so far the results have been very good. While he still is not speaking there are other skills that he is able to learn.

I think I'll leave it here for now...we are now in May, a few months into the school. Was I expecting more as we round the last corner and head towards our 'One Year Surgery Anniversary'? Yes I was. A lot more. Am I grateful for what we have? Absolutely. It could be much worse.

Though I spend much of the time feeling lousy I do still have moments of clarity. Moments of non-worry about his future, and our entire family. But those are things I go over day-to-day in the blog. This was meant to be a re-cap, a brief 'history', with less commentary than the longer 'Bennett History' I need to update. But even so, despite my best efforts, it is still VERY long.

BUT...I am what I am. And I always get diarrhea of the keyboard when I get into these things.

Anyway, if you read this far and are new to the site, I hope it helped you get up to speed. If you have any desire to ask me something or need anything, feel free to e-mail me at

I'm usually around. :)


Wednesday, May 12, 2010

Here's Another Video and the Carter Re-Cap

Another video, taken a few weeks ago. Bennett spins a Frisbee in the driveway of his grandparents house.

He loves to spin things.

Listen for the coughing thing in the video. He imitates a cough he hears in the background, which he does rather frequently now (though we never know if he HAS a cough or is imitating) and that's something to note. When you are dealing with a situation like this, it's the little things that you have to use as positive reinforcement for your own peace of mind.

Sinead, one of my SN Sisters, calls them 'Inchstones'. I loved the term, and use it now as if it were my very own. In a journey with your kid who is disabled for whatever reason, you have to measure things in 'Inchstones', not 'Milestones'.

If you don't, it's extremely easy to get bummed right the fuck out. Hell, that's easy anytime, but it's even easier unless you can hang on to small positives.

Oh and I know some folks were expecting a report on Carter and the visit up to CC. I'll give you as brief a version as I can. He had a great time. I posted some photos of the trip on my Facebook page. Go check them out there, I don't feel like re-formatting them for this space right now.

But as far as Carter going along...he was delighted to be there and I think felt much more connected to all of us. He was inquisitive, funny and we got to spend a lot of quality time together. Funny that he could not grasp the concept that Hotel TV is shit compared to anything we have at home (as far as selection, etc.).

He did great through all the waiting for the MRI and junk, and he did even better having to wait at least 2 hours, maybe more, to get anything to eat or drink, cause none of us wanted to do it in front of Bennett since he could not have a thing. Eventually Jen, Carter and I had breakfast together while Bennett was getting magnetized.

I should mention that the last couple of hours before heading home he was a tremendous pain in the ass, as he wanted to get the hell out of there as much as we did. Very whiny, very hard to manage.

The offices were hot as hell, we waited an unusually long time and all of us wanted to hit the road. Including him.

Eventually we did.

Was it easier to take him? No, absolutely not.

Am I glad I did?

Hell yes.


Tuesday, May 11, 2010

In the Meantime...

I've actually been working on an 'introductory' time-line for Bennett for people who are new to this space. It's been harder than I thought researching all the dates and junk. That, along with some extra work shipping some stuff out, has kept me off the blog for a while.

In the meantime, here's a recent video I took of Bennett. He does this kind of thing a lot.

I'm starting to really see the sensory stuff more now than I used to. Guess I was in denial or something. I dunno. He still ain't talkin' much, if at all. In fact, even 'Dadda' is pretty much gone now. Now its 'Gaga'. Still hear a 'Mama' every once in a while and sometimes a 'NahNah', but he is still very non-speechy.

Loves to giggle and play though, so there is that. And things could always be worse, I get that.

I'm bummed today. Can you tell?


Wednesday, May 05, 2010

For Those Who Check In

This quickie post is just for those who like to check in to see the skinny on Bennett and his journey down the Special Needs Rabbit Hole. We had the MRI on Tuesday, and it was still clean. Translation? No evidence at this time of regrowth of the Grade II Oligoastrocytoma. (That's a brain tumor that usually occurs to middle-aged people, for those of you who might be new to the party.)

Next scheduled MRI will be in late August/early September. That visit to Cleveland Clinic will be major, probably requiring three days. Lab work, MRI, PET, EEG, meetings with Epilepsy, Neuro-Surgery, Neuro-Oncology and Neuro-Psychology. I think that's it.

As for a more detailed report of the trip, I'll get it done tomorrow or Friday. Today is a catch-up day with work-type stuff.

So that's it...light is green, trap is clean. For now.


Monday, May 03, 2010

On The Road Again...

Off to Cleveland Clinic, for just a couple of things. Another MRI...remember Bennett has to get one every 3 months, and Neuro-Oncology will be taking a look-see after that. Right now we are scheduled to be back Tuesday night, but as before we have left it open in case any other appointments or things open up.

One difference between this trip and those that have come before.

Carter will be coming along.

Usually, when we go to the Cleveland Clinic (since the distance almost always requires a hotel stay) we leave Carter here with his grandparents. On the longer surgery trip he stayed with his Aunt. But this time, after getting a phone call that Carter was having a few issues with the other kids in the Peer Program at Bennett's new school, it got me to thinking...

See...recently Carter has been really up and down. I haven't spoken much about it yet because it is fairly new, and of course like anything else it is yet another thing for me to try to wrap my brain around in this fucked up Special Needs Universe in which we try to exist.

Lately I have heard quite a bit of ‘You love Bennett more than me’ and ‘You don’t even like me anymore’ or even ‘I wish we didn’t have Bennett here’. Heartbreaking things to hear come out of your child's mouth, in many ways worse that Carter telling me 'I hate you!!!!', which, while I am sure is coming someday, is easier to take than him questioning whether or not his parents care about him.

Like most things with this ride we’re on, I have no idea how to even begin to fix it and feel powerless. It is yet another casualty in this war...the shrapnel of these Special Needs Grenades goes EVERYWHERE and takes a piece out of EVERYTHING.

After I got the phone call from Step-By-Step Academy, that afternoon I invited Carter along for this trip. He seems to be happy about that. I think once he gets there and sees how boring it is he’ll choose his grandparents instead on future trips, but at least this lets him feel less excluded.

That’s the plan anyway.

As for the interactions he is having with the Autistic kids at the school and with heart I know he is a good kid. He means well and he's often shown me to be very bright, generous and giving. But he, like Jen and I, are under lots of new and unique pressures we’ve never faced before. Our worlds are up and down a lot, and sometimes we don’t know which way is up.

That’s got to be affecting him since he is so young and doesn’t know how to process the feelings. We do the best we can with trying to work through stuff with him, but the bottom line is that if the kids at the school are being negatively affected by Carter in any way then he’ll need to be pulled out, since it is their needs and growth that is paramount here.

The person I spoke with at the school about it is going to try to work with Carter, and we'll be syncing up with each other later in the week to see how it is going. On the home front, in addition to the invite, Jen and I will try to be more aware of Carter and his needs, but it is a difficult thing to do.

Bennett requires a LOT of attention and unfortunately we JUST THIS WEEK lost his current Nurse's Aide. She was coming 4 nights a week and Saturday mornings but now we only have her one night, and it will be a while until we can set up another agency that accepts the Medicaid waiver. That's hard to find.

Long story, one that I will hit when we get back.


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