The Amazing Owen
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So, you may ask, just how is Owen these days?  Well as always there's good news and bad news.  And as always I'll save the good for last so that we can leave on a happy note.

The not so great news is that Owen's seizures continue. Every time he gets a virus we go through a seizure.  Well, you may think, a seizure every few weeks isn't so bad - and that would be true if they were quick little seizures.  Owen does not have quick little seizures, or at least he rarely does.  This was the scene on the side of the road on I-79 on our way home from the trip to Niagara described in my last post:


I shoved aside all of our luggage and gear to make room to spread him out.  This is a scene that I would like to see a little less of, and so would Owen I'm sure.

We had been more or less pleased with our local neurologist until recently.  Due to economic considerations he has had to move from his 27 year old private practice to one in the hospital clinics.  Since then you can't get ahold of him, it takes days to hear back from him even with the nurse is uncertain about which meds he's really supposed to be on.  It's a bit nerve-wracking.  I believe that a very good and knowledgeable neurologist is being ruined by "the system".

We had been talking about getting a second opinion even before his neurologist moved - just because Owen's seizures are so severe and it seemed that it would just be silly not to ask around a bit.  Given the overall circumstances we decided to call down to Duke - where so much of Owen's care has taken place - to see one of their pediatric neurologists.  We were lucky enough to get in on a cancellation and went down the day before yesterday.

Just as I was packing up the car to head down on Sunday - our appointment was early Monday morning - Owen had a nice seizure to send us off with.  We ended up leaving a few hours later than planned.

I was pleased with our initial meeting.  The doc spent 45 minutes with us going over Owen's history and examining him.  He agreed that we are currently in a very bad place - so many meds on board that we are experiencing loads of nasty side effects, but also still having all the seizures.  You could put up with the side effects, or at least some of them, if it was stopping the seizures - but it hardly seems worth it when the seizures are staying about the same. 

Owen is currently on three different seizure meds - Zonegran, Trileptal and Lamictal.  He has three different sets of doses that are given at wakeup, 1:00pm and bedtime.  The combination swings him wildly between zombie and frantically happy throughout the day.  His motor skills have been heavily affected by the Lamictal.  He bites his own arm all the time - not to bleeding, but to bruising.  He is constantly in motion hitting (not to hurt, but just for movement) his head, his tray or something else all the time.  He is sleepy all morning and overactive in the evening. He has become less and less talkative. 

The Duke neurologist seemed to feel that all three meds work on the same channels in the brain and therefore their side-effects tend to be cumulative.  We need to get rid of at least some of them.  Owen has also never had the levels of any of his meds checked in his blood.  After reading other blogs where level checking seemed routine I asked our local guy why he didn't ever check levels.  His answer was philosophical and probably has some merit - that if you are still having seizures then you need more, and that if you are not having seizures then you have enough.  But the more I have read lately I see that children really seem to metabolize the meds at very different rates - some will take a lot of meds but process them so quickly that they aren't helpful by the end of the day, and others will take a bit and not process it at all and end up with sky-high levels.  So it seemed that you might at least want to get a baseline for what your kiddo does with the meds.

The Duke neurologist ordered bloodwork for Owen to be drawn before we left the hospital on Monday to see where we were at. Once we get the levels back later this week we will begin weaning off the Trileptal.  Depending on what the levels say, he may bring the Lamictal up because eventually he wants to end up with just the Lamictal and a new drug Depakote.  Apparently Lamictal and Depakote work well together.  This is going to be a long process and at the end of October Owen will be admitted to the hospital to the epilepsy lab.  There they will also take away the Zonegran and hope that he will have a seizure during a week of continuous monitoring.  Since Owen's only trigger appears to be viruses, it's hit or miss if he will have one or not, but hopefully removing another med will lower his threshold and being in a hospital brings up the odds on having a virus.

We want to catch a seizure in action for a number of reasons.  Beyond it just being helpful to see it on an EEG, we want to see where the seizure originates from.  There is a very small possibility that Owen might be a candidate for surgery to help control his seizures. With the extensive brain damage that Owen has, it is likely that a whole lotta things are mis-wired up there and that there isn't a single point which is causing the seizures.  If there is more than one "focal point" generating the seizure then surgery won't help.  However the fact that Owen's seizures always follow the same pattern and always affect the left side of his body only means that there is a reasonable chance that they are in fact always coming from the same spot.  If so then he might benefit from surgery to help control the seizures.

We also discussed the possibility of a Vagus Nerve Stimulator (VNS) which is a small device implanted just below the shoulder.  It acts sort of like a pacemaker for the brain and has been helpful for many people. 

We know that the odds of control with meds are very low at this point.   Once you have tried two different meds and failed to affect the seizures, the odds go down to something like 10% for each med you try thereafter being effective.  But, we are going to at least try the Depakote before we bring out the knife again. 

So, that's where we are now with the seizures.  Now, on to the good stuff!

Today was Owen's first day at his new preschool.  He had been going to the same Montessori school that his sister attends for the last two years.  He only went a few days a week and it was wonderful that he was able to have that interaction with the other kids.  We were very grateful that they welcomed him into their classroom.  This year, however, Owen was eligible for the Virginia preschool initiative in the public schools.  It wasn't an easy decision to leave an environment that we were comfortable with, but in the end we decided on the public school.  They have just built a brand new school right across the street from us and it is an incredible facility.  They also can offer lots of adaptive technology and have bent over backwards to make his classroom accessible.  He will have teachers with lots of experience in special ed working with him.  They have ordered a special tricycle to help him navigate the hallways, they have adapted swings on the playground, they have brought in a chair with sides from him to use while working.   We just couldn't turn down that opportunity for him.

Today was his first day and he had a great time.  He's still a bit shaky from his last seizure - and a bit icky from the cold that brought on the seizure, but he still played with toys and enjoyed the swings.  I think it's going to be really good for him.  Owen qualifies for a one-on-one aide.  The aide that had been with him for a year and a half quit before school started and we were scrambling a bit for a while there, but it has worked out allright.  I was originally going to be a substitute special-ed aide this year - just to get me out of the house a bit.  So, instead of being a sub they just promoted me to full time aide and for at least the next few months I'm going to be Owen's aide.  There will be other aides that will be shadowing me throughout the year and if Owen's seizures calm down we might transition him to someone else and I'll take on another kiddo in the same school, but that's a long way off given where we are right now. So I get the job I wanted and Owen gets to go to school.  Everyone wins!

Allright, that's a lot of verbage, time for a picture!

Here is a blurry, useless picture that I took of Owen at school today:


He wouldn't sit still long enough for me to get a picture with my phone.  The phone requires the subject to be absolutely still if you are inside, and Owen is rarely absolutely still unless he's asleep. But you can see the really colorful rug that they have in the classroom that he loves to crawl on.

I also put together a little video of why it is that we can't get a still picture of Owen anymore.  Just ignore Mommy's commentary - I didn't have time to find a soundtrack - and enjoy watching him climb around:

I will close with a picture of Owen and his sister hanging out in their favorite rocking chair:


Ah...We Meet At Last!
Just about 4 years ago I began writing this site.  The time during the pregnancy was, as you can imagine, somewhat difficult.  I don't want to say that we felt alone, because that would be a disservice to the wonderful family and friends that showed us so much love and compassion during that time.  I think a better way to describe it would be to say that we were hundreds of miles out to sea floating on a raft.  Our friends and family could visit us on that raft, bring us care packages and words of encouragement, but no matter how much they wanted to they couldn't help us get off the raft.  We were completely surrounded by unknown waters with no way of knowing where our raft was taking us or where we were going to find ourselves when we landed. 

This website was many things to me when I started it.  We had gleaned lots of bits of information piece by piece as they had passed by our raft in little bottles and I wanted to be sure that all of that information was spread to everyone on the other rafts that I knew must be out there.  I wanted to be able to share what was happening on our raft with our family when talking about it was hard.  And I wanted to reach out to all of those others rafts and say "Come, lash your raft to ours and we'll float through this journey together."

Never could I have dreamed that so many rafts would join us that we would become a flotilla.  Never could I have imagined that even when we reached land we would stay connected to the people on those rafts in such a meaningful way.  We are spread all across the continent, but we are still lashed together. 

From August 4th to August 6th the most amazing thing happened.  Those of us who have stayed the closest together over the last few years met together in person in Niagara Falls.  Some I had met when their kids had come in for cord blood infusions, and others I had only gotten to know through the wonders of the web.  It was an incredible experience.

This was the best picture that I took of the group of kiddos.  From left to right, with links to their blog sites:  TylerElijah, Isaac, Elisabeth, Matthew, Cayman and my Owen.


I think Kristen got a better photo where you can almost see all of the faces:


Not pictured above is Ben, who made the trip with his Mommy, but didn't make it to the State Park that day.  I shamelessly stole this picture of Tyler (left) and Ben (right) from Tyler's website:


The kids made instant friends:





The above picture is actually taken from Cayman's website, and in truth Elisabeth and Owen were have a pretty funny disagreement over who should play with the football that Owen stole from Tyler.  You can read about that here.

And I love this picture of Elisabeth with Isaac and Matthew.  You can almost hear her saying, "Yeah, these are my boys..."


And lets not forget the siblings.  Sammy was very excited to meet other kids whose lives were more like hers.  Sometimes it is hard for her because her classmates and other friends just don't understand that a bad day isn't "My brother got more jelly beans than I did", but more like "My brother had another seizure and is in the hospital". 


Top Row (left to right): Alexandra, Megan, Grace, Micah, Sheri
Bottom Row (left to right): Katelee, Spencer, Sammy, Lorelai and Mason

Plus, it was just a good excuse to run around with a bunch of other kiddos, especially when there are sprinklers going:


We made a pretty good sized group all spread out with our gear, and Owen's stroller is behind me so it isn't even part of the scene:


But who could ask for a better backdrop for such a gathering than to be just a few feet away from this view:


I loved this picture from Elisabeth's website...I think it's possible that we Mom's took a few pictures:


And speaking of Moms - yeah, it was really the Moms that were wanting to wanting to get together for a big ol' chat in person:


From left to right that's: Diane (Tyler), Amanda (Isaac), Jen (Elijah), Me (Owen), Jill (Matthew), Lisa (Elisabeth) and Kristen (Cayman).  Plus there is Elijah trying to get to his Mommy.

A chat, plus some just plain silliness.  We all rode the Maid of the Mist together that afternoon.  Depending on which camera was pointed at us, different people's faces were blotted out by the water drops:



but it was wonderful fun getting wet whether the cameras made it through dry or not! Those pictures are of Jill, me, Kristen and Diane.

Owen was just fascinated by the raincoat:


And he giggled when his face got all wet at the base of the falls.  Sammy enjoyed it very much as well and even though we had just gone on the boat the day before when we first got into Niagara, she was keen to go again when the whole group went.


In addition to the day at the park there were dinners and long hours by the pool at the hotel for catching up on our kiddos and chatting up a storm.  This is definitely a day we will all never forget and we all hope to do it again in the not so distant future.  Our rafts have all drifted back to Virginia, Washington state, Toronto, Missouri, Nebraska, Ohio and Massachusetts, but they are tethered together stronger than ever.
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