Saturday, December 31, 2011

Walking the halls of the hospital clinic this week, I heard some poor kid's panicked wails echoing off the walls.

"It's going to HURT! I don't want to do it! I want to go home!"

Perhaps somewhat inappropriately, I smiled as I looked down at Spike and said "Quiet down buddy. It's just a blood test."

Spike went through countless blood tests, IV insertions, surgeries, healing, poking and prodding with nary a complaint and now he was screaming about a simple blood draw? Yet another happy sign of normalcy as far as I was concerned.

Go ahead Spike, scream your head off. It's NORMAL for a four year old to hate blood tests!

We were in for a follow up visit with his wonderful Duke neurologist. As Spike and I entered the examining room, the nurse told him that she was going to take his blood pressure. Spike cheerfully declined, saying, "You don't need to check my blood pressure anymore. I am a healthy boy now!" His blood pressure was, of course, normal.

Medically, things could not be better. Although he is not out of the woods yet, every day that passes without any seizures further reduces the chances of them returning ever again.

In three or six months he will have his first post-operative EEG. Waiting for those results will be stressful as any abnormalities could point to potential trouble. Or not. The problem, diagnostically, is that a normal EEG does not indicate that he is cured and an abnormal one does not indicate the seizures will return. Epilepsy is a devious monster that will always lurk in the background but may never show its face again. In fact, at this point, Spike is probably beyond the 50% likelihood of recurrence point - on the good side of 50% for once. Consider that as late as November 8, the chance of him having a seizure in the NEXT HOUR was far greater than 50%!

The doctor did tell us that the longer we keep Spike on anti-epileptic drugs, the lower will be the likelihood of seizures recurring. As I have been vocally anti- anti-epileptic drugs for quite awhile as they were not helping Spike and they were certainly having adverse effects, the doctor took great care in explaining why they keep patients on them so long.

1. The surgery itself may create conditions conducive to seizures regardless of any cure of the original ailments.

2. Some patients who are weaned off of the drugs too early after experiencing no post-operative seizures may suddenly develop seizures that do not respond to any medication OR surgery.

3. There's a lot we still don't understand about epilepsy and the drugs may provide some insurance if the side effects are acceptable.

Well, sign me up for a lifetime supply of drugs then! I will do whatever is necessary to reduce the chance of new seizures.

Of course, I knew this was coming so I was insistent (pushy, demanding, over-bearing) about getting him on an acceptable mix of drugs BEFORE the surgery. The hyperactivity side effects that he experienced from some of the drugs would NOT have been acceptable for a year or longer after surgery. Now he is perhaps a bit happier (in a very slightly drunk sense - not impaired at all, just overly happy) and a bit more hyperactive than he would be without the drugs but the happiness tends to offset the hyperactivity and renders it mostly harmless. In fact, never having raised a little boy, I have no idea what normal is for his age. What's important is that his current condition is more than acceptable forever as far as I am concerned.

The doctor also provided a clear explanation of the pathology results that confirmed my amateur understanding of the report. The malformation in the excised tissue was congenital, meaning that it was present before birth. Something happened long ago in the initial development of that part of his brain that just wasn't going to be fixed or go away on its own. It had to be taken out. Thankfully, we live in a time when that is possible.

Of course, for many children, such solutions simply do not exist. As I was making a follow-up appointment, a family came up with a young boy in a wheelchair along with a seizure dog. The boy smiled at me and I nearly cried. He was alert and aware but obviously crippled by some neurological condition. I'm sure he was there to see the same doctor we had just left and would receive the same quality care that helped Spike. Nonetheless, some random string of events occurring probably before birth left this child with fewer good options. I think about that a lot because I fully expected to be wheeling Spike around myself given how his condition deteriorated throughout the year. My heart goes out to all the kids and families who deal with severe medical issues. I had to take care of my own kid this year. I hope someday I find a way, I hope many of us find a way, to help others in the future.

Spike enjoyed a great Christmas. I'm not real big on Christmas traditions but he has somehow picked up the finer points of the holiday season. He insisted on outdoor lights and he even dragged me out to get a wreath for the door because he said, "You just have to do that at Christmas!"

For the first time, Spike was not the least bit cautious around Santa. In fact, he didn't bother waiting in line. He just marched right up and started reciting his well thought out list of gift requests. Of course, he can blame his lack of inhibition (manners?) on the phenobarbital. Santa understands. I sure hope the poor little girl who was on Santa's lap at the time got her requests in!

We have enjoyed glorious weather the past couple of weeks in North Carolina and Spike and I head out to the woods or water every day. For some reason, he objects to going out every time but I insist and then he has a great time. He runs, kicks pine cones, throws sticks, digs in the dirt, wanders into the undergrowth and basically makes a nuisance of himself. All blissfully normal behavior for a four year old boy.

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Yesterday I took him out to the dam at Jordan Lake (the prettiest setting in all of central North Carolina) for some free range running with a playground nearby in case he showed interest. The first thing we did was climb a steep hill to the lookout platform. I run every day and yet I was getting winded about halfway up. He stopped, wiped his brow dramatically and said, "Phew! What a climb!" He then SPRINTED to the top, leaving me in the dust. That's a remarkable recovery less than two months after such major surgery.

For the first time, he also showed real interest in the playground and climbed around for awhile before running off down a newly discovered trail through the trees. His strength may lag his age peers a bit but he is rapidly making up for a lost year of real physical activity. His coordination is also as good as ever.

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Even though Spike continues to object before going out every day, I have to drag him home out of the woods as the sun goes down. He pretends to lock himself to park gates and trees and then always blocks my way as a last effort to stay outside just a little longer. He generally wins these battles as I cannot imagine better physical and emotional therapy than being outside on yet another father/son adventure.

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On January 2, 2011, Spike suffered his first seizure. That one was the worst by far and still gives me nightmares. As I watched him and grabbed for my phone to call the paramedics, I wasn't sure he was going to survive long enough to get to the hospital. When he came out of it and I raced him to the emergency room faster than the paramedics would have been able to, horrible thoughts crowded my mind about what this all meant. The reality that developed was far worse than all of those thoughts combined. Several times during the year, I was sure we were going to lose him but he just kept fighting back. 3,000 seizures later, Spike has apparently beaten the monster with the help of all the medical professionals on his team.

2011 will probably always represent Spike's worst year. Right now, it also represents his best but I just know he has even better ones ahead - starting tomorrow.

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Saturday, December 10, 2011

An Energetic Milestone

One month ago yesterday, Spike underwent major brain surgery.

Yesterday, I took him to the park once again to enjoy some fresh air.

The kid in the park yesterday is NOT the same one that I helped wheel into the operating room.

The New Spike is not only seizure free after a month, he is a bundle of joyous energy. He is happy all the time and he just can't get enough of everything he encounters.

I figured we would walk a mile through the forest. After three miles, he was ready to do it all again - and he didn't walk, he ran. As I kept up a steady pace, he stopped to look at everything and roll around in the duff. Then he would pick himself up, run past me and do it again. Big hills, slippery paths, tricky tree roots - nothing stopped him and the whole time he chattered away happily, making up stories and asking a million questions. Not the same kid at all.

After seeing the hills and the condition of the trail, I decided to sit out my race today. I figured I had gotten enough exercise with him and it would be nice to sleep in for once on a Saturday. My feet hurt too. And my knees. And I had a paper cut on my thumb. And I'm sure I had other excuses too.

Having made the irrevocable decision to skip the race, I found myself at the starting line this morning at 9:00. If Spike can handle the course after all he has been through, I figured none of my excuses were valid. Ran my best race yet, with my fastest time. Fastest, not fast. After a day of rest and ibuprofen, Spike and I will head out to the Cary Soccer Park to walk next week's course. Soon, he'll be running with me.


Wednesday, December 7, 2011

Life Goes On : Another Walk In The Park

Everybody enjoys a walk in the park with their kids on a perfect autumn day but no one more so than me, taking walks that I feared would never happen again.

While Spike continues to show no interest in leaving the house, once I actually get him outside, he has a great time. While his physical therapy seems to be working well, he remains hesitant about climbing in the playground. I think that has more to do with nervousness about other kids flying around than it does with his own abilities. He justifiably remains tentative about his balance and strength. Worrying about someone suddenly running past him while he crosses a swinging bridge or pushing him aside as he gets ready to go down a slide takes the fun out of the playground. So when I get him to a park now he immediately wants to walk through the woods - which is just fine with Dad!

On Sunday, I took him to Bond Park in Cary. Aside from getting him outside, I wanted to walk a bit of the course that I will race next weekend. I knew that we wouldn't be able to walk the whole three miles but figured I would at least get a sense for the course. As it turns out, it's going to take more than three miles to tire out the new Spike! While we didn't walk the course, we did spend more than two hours walking everywhere else. Up and down hills, across the dam, through the woods, along the docks - we did it all and he left asking for more as the sun began to set. That's when I realized that Spike has once again become what we've all wanted all along - a normal kid.

Now that Spike has returned to this blissful state of normality, continuing his blog would be the self-indulgent crowing of a proud papa. Which, of course, doesn't mean I won't do that! However, I have decided to cut back on the frequency of updates so as not to bore everyone with the minutiae of the daily life of a four year old and to give myself more time for other writing.

I originally started this blog with the sole intent of updating my family on Spike's medical issues. So much was going on with him that I had little time or energy to update everyone individually with e-mails and phone calls so I figured that posting a quick update once a day was simply efficient. The blog turned into so much more. For one thing, the audience quickly expanded far beyond my family to include several hundred people scattered all around the world. These ramblings have now been viewed over 10,000 times by people who care deeply about Spike even though they might never meet him. The e-mails I receive continue to brighten every day for me. From my selfish point of view, the blog gave me a refuge from the hospital during those most stressful times. Even if I was writing while sitting next to Spike's bed in the ICU, I could escape, mentally and emotionally, while remaining present physically to handle whatever might come up. Most importantly, I felt the caring and support from everyone who followed Spike. That helped more than you can know. As I have said before, no matter how strong and independent you think you are, if you find yourself overwhelmed by a crisis and someone offers help and support - TAKE IT. Thank you all for the many ways you have helped me, sometimes by simply being out there and listening.

I will post updates at Christmas, on Spike's birthday in February and whenever he reaches major milestones in his recovery. If there are major setbacks, which there won't be, you will hear about it here.

Enough words! I will give you something far better now. A little walk through the park with Spike.

Who wouldn't want to take a walk with a normal little four year old?
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Of course, "normal" can mean just about anything at that age. A nice quiet walk in the woods, watching deer and picking up sticks can quickly devolve into an air guitar solo from Rock Star Spike!
air guitar

Once he hears that beat in his head, can you blame him for breaking out in dance?
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It's all fun and games until he threatens the paparazzi with stick. For people who crave the spotlight, rock stars can be so unreasonable when fans want a photo.
stick daddy

Only one thing to do then - tie them to a post until they clean up their act. Spike blamed his violence on the drugs. Yeah, they all do that.
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Just when you think you've rehabilitated the criminal, you find him carrying a weapon! The shadows do not lie - look at that right hand!
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Busted!
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Yes, he's a little devil and here's the proof.
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But that music in his head will just not be silenced.
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This time he locked himself to the post and claimed he lost his "arm key" so we couldn't leave the park.
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He then decided that being in the park was a vital part of his physical therapy regimen. Hard to argue with that so we stayed a little longer.
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Thank you all for walking with us through Spike's entire journey. Now that his medical adventure is over, it's time for him to walk into his future, under his own power thanks to the skilled hands of a surgeon, with the support and love that all of you have shown.
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Friday, December 2, 2011

What's That In Your Hand Spike?

Spike came to me today holding something I had not seen him carry in a long time. A book!

Yes, he actually put his iPad down, went a got a book and asked me to read to him. That's a big change for him as he just has not had the attention span for books in the past year.

A couple months ago I had gotten him some very nice books by Sara Varon. They are long stories told all in pictures. I thought he might like that better than wordy books. Anything to get books back in his life. He enjoyed them at the time but today said he wanted me to read a real book with words. I've been reading to him at bedtime but this is definitely the first time he has gotten a book on his own initiative in the middle of the day. Progress, slow but steady.

Unfortunately, Spike has not been progressing as well with his various fears. He is scared of heights, elevators, loud noises and who knows what else. These are all new or re-emerging fears since his hospitalization. of course, it is hard to associate them with his illness versus his being a four year old. In fact, as I was talking to him today about them, I explained that when I was a kid I was afraid of heights, escalators and, most of all, boats, especially sailboats! That sort of argues against it being illness related.

I told Spike that I overcame my fears by just going out and doing things to show myself there was nothing to be afraid of. I am obviously no longer afraid of sailboats but I AM afraid of the cost and time commitment required for my sailboat addiction! Not sure that's a good trade-off.

Spike asked if I was still afraid of anything. I told him I don't much like heights but the only thing I could think of that I was actually afraid of is snakes. To prove that he had been listening to me, he promptly grabbed a stuffed snake and stuck it in my face to help me get over the fear. Didn't work.

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I spent four days working in Chicago this week. It is getting harder and harder to be away from him. Guess I'll have to bring him along. He should enjoy the long elevator ride to the 41st floor and the floor to ceiling windows looking down on the noisy construction site. Er, maybe I should hold off a bit on that trip.

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