The Amazing Owen
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Merry Christmas

I thought that this Christmas deserved a special season's greetings message from us.  If you follow the archive links to the right, you will see that last year at this time Owen was Seizing Thru the Season.  It was one step forward and four steps back.  I believe I described it as "The Long Dark Tea Time of the Soul" (quote stolen from author Douglas Adams)  Not fun.

This year was shaping up to be the same way - from September until mid December he was unable to stay awake more than a few hours a day.  We couldn't figure out why.  We had pneumonia, poo issues and vague symptoms.  EEG after EEG, CT scans, x-rays, the works. 

But then things turned around.  We got the poo cleaned out and that solved the pain issues.  And then we got the big answer.  He wasn't sleeping due to shunt problems or seizures, it was mono.  The simple, obvious, and we never thought about it because 5 year olds don't usually get mono, but this 5 year old spends a lot of time in germ infested hospitals and doctor's offices.  But eventually I started showing the same symptoms that Owen was.  I was exhausted for no reason.  I went to the doctor and the blood test confirmed it - I had mono.  We had the same test done on Owen, but it is inconclusive in young children because they don't produce the same antibodies.  But with me testing positive and him starting to perk up in just the right timeline for mono to be overwith, it's a pretty certain thing. 

And so now Owen is slowly coming back to normal.  He is staying awake all day and he is moving around more and more.  It is taking time for his strength to build back up, but he is getting there quickly.

But wait, there's more!!!  It has been 2 months and 22 days since his last seizure.  This is an unprecedented break for us.  Between the VNS, the new meds and Jigsaw's help, Owen has finally managed to get enough of a breathing space to be able to thrive again.  This alone would be an unbelievable Christmas present!

These pictures are from Owen today:

Owen taking a cookie out of a bag all by himself.  It may seem simple to you, but this is a complicated task requiring him to hold on to the bag with one hand and to reach in with the other to grab something he can't see.  It was a task that he finally learned how to do a few months ago, but then stopped doing again while he was ill.  At 5 years old he has finally truly mastered this basic task.  He spent his morning happily pulling animal cracker cookies out of a bag.  Hey, it's Christmas, he can have cookies if he wants to!


And Owen just loves to push buttons.  He can't play the games or follow the instructions that the toy is giving him, but he knows that if he pushes buttons things make sounds or flash lights and he likes that:


His friend Mya sent him some jingle bells that he had a wonderful time with:


Recently Ms. Pat, Owen's special ed teacher, started trying him out with an iPad.   I have downloaded the same apps onto my iPhone to help him start to learn the basics.  The best one is a virtual xylophone where you just have to touch the screen and it will play tones.  Owen isn't up to touching specific spots to make specific things happen yet, we are just trying to teach him to touch the screen to cause something to occur.  He is learning and he likes the xylophone sounds.  Grandma and Grandpa recently got an iPad and here he is with Grandpa trying out the xylophone (Music Sparkles is the app name):


So this Christmas we are counting our Blessings.  Having two healthy kids who are home for the holidays and doing well makes this an awesome Christmas!


Merry Christmas to all, and to all a Good Night!

So, What's Up?
I thought I'd use my hours sitting in the hospital (for a little procedure for me, not Owen) to do an update of how the boy is doing these days. 

Firstly we had another meet up at Duke while a couple of adorable girls were getting their infusions.  I was thrilled to be able to hold Miss Claire again, it had been a few months and I really missed her Mommy and Daddy (Amy and Brad) as well since I had spent so much time with them when Owen was in for seizures earlier this year while they were waiting for Claire to be born and then spending time with her in the NICU at Duke.  I can't believe how big Claire has gotten! 


And how could you not love that smile?


Owen looks pretty much like he felt at that point - tired from a long day, but it was great to finally have the two of them meet.  Owen was never allowed in the NICU with me, or the step down unit so he had never gotten a chance to meet Claire in person. 

Claire was also kind enough to share her toys with Owen:


She even shared her most very favorite toy: Mort.  I wonder if she would have been so generous if she had been awake :-)


And I couldn't visit Claire without getting in some serious snuggling:



We were also thrilled to meet a new family whose little one was getting an infusion this day as well.  Introducing Kahlyn Soto along with Owen and Claire:



Owen was enjoying hanging out with two such beautiful girls I think:


Gosh, he looks like Gulliver in those pictures! 

Jigsaw had had a long day by this point too and she had just made herself comfortable and slept while we visited:


Of course the instant she hears the bleep from the camera focusing she opens her eyes, but you get the idea. 

Sure Steps
In my last update about Owen I said that we were going to try out some SMO's from Sure Step to help out his balance to see if we could get him walking a bit better.  They finally came in.  As I will talk about in the next section it's a little hard to know how much they are helping due to seizure stuff, but they certain seem to make him more stable.  Here you can see them on his feet while he's climbing the stairs:


Owen peeking back at his Mommy to see if I'm still there:


He is supposed to be wearing shoes with them, but he is very good at taking the shoes off.  Speaking of shoes, Blake Cotten was wonderful enough to give Owen his old shoes that fit his AFO's, which work much better than the standard Walmart ones that we had.  Blake is the little boy in the middle with the helmet in this picture that I posted a few months ago:

Eventually we did get him to keep the shoes on long enough for a picture:



Owen has certainly picked up speed in walking around on his railings since getting the Sure Steps.  I also have a little video of Owen showing off one of his more impressive skills.  He actually learned how to do this last year, and then lost the ability for quite a while due to the seizures, and then started doing it again after getting his VNS.  I have just finally gotten around to video taping it.  This is Owen climbing the ladder into his sister's bed.  For some reason he is absolutely fascinated with this and will crawl from the living room, up the stairs and into her bedroom to climb the ladder several times a day. 

Well it's the fall and for Owen that has always meant that he enters the most seizure rich season of the year.  The VNS certainly improved his situation - we are only having big ones every few months instead of once a week, and even the big ones aren't as severe as they were before the VNS.  We are not, however, seizure free. 

When last we discussed seizures he was having small ones every few days and they had increased his Depakote and given us Ativan to stop the seizure before it hit if he was starting to act strangely.  As soon as he started taking Depakote during the daytime, we lost most of the progress that we had made with the walker.  If you remember I posted a video back in August with him making an epic walk at the mall, and he had been doing that regularly.  Once we started the daytime Depakote he stopped the long walks and would only do a few steps at a time.  We decided to continue giving it a go though to see if it would stop the seizures. 

On Owen's birthday (September 25th) we decided to take him out on a boat for the first time - we used to spend lots of time sailing and diving and it was time to get back on to the water.  He spent most of the day just completely out of it.  We did give him Ativan, and he was awake, but he was moving very slowly.  The day after that he slept almost the entire day. The next day he was awake for most of the day, but he couldn't pull to stand and even his sitting was very wobbly - since he had no obvious illness or seizure it was time to check the shunt.  We got him in for a CT scan and it showed that the shunt was fine and he eventually got less wobbly and was able to stand back up.  The assumption was that he had had a huge seizure that no one saw.  Or perhaps that whole day on the lake was a seizure, just with no convulsions or vomiting.  A few days later he had the biggest seizure he had had in months and actually needed Diastat. 

So we increased his daytime Depakote again.  Now before the big seizure that we didn't see we thought that perhaps we had started to see some absence seizures.  This type of seizure is hard to be sure about because they are quick, they last less than a minute and by the time you can get to him to poke at him it's usually over with.  After the last increase in the daytime Depakote though they seemed a bit more obvious.  We also had a morning, 4 days into the last Depakote increase, where he had lots of tremors in his hands.  Tremors are a common side effect of Depakote and so I called the neurologist to be sure that we didn't need to do something about it.  He said just to wait and see and it wouldn't be permanent even if the Depakote was causing it.  By the next day the tremors were completely gone- which means it wasn't the Depakote.  He had had yet another seizure without enough outward symptoms for anyone to catch it.  This was scary, very scary.  He is monitored by someone 24 hours a day.  I sleep with a video monitor next to me and the dog sleeps with him.  He is never alone.  So how can I fight what I can't see?  How can I treat the seizure if I don't know he's having one? So it was back into the car to see the neurologist at Duke again.

Dr. Gallentine agreed that something is not right.  We are still giving him Ativan every four days or so, and if we don't he seizes so it's obvious that we are treating the seizures with the Ativan more than we are the Depakote.  And we are having lots of side effects from the Depakote which is undesireable.  He ordered a boatload of bloodwork and an ambulatory EEG.  So once we have the levels back and some more data we will decide about maybe backing off the Depakote and just using the Ativan every few days.  The ambulatory EEG will start on Halloween and last for 5 days.  The bummer is that you have to bring it in every 48 hours to download the data.  That's a 7 hour round trip so we will only be home for 2 out of the 5 days.  Hopefully though it will let us know where we are because things have become so vague.

The Good News 
The good news is that while we have lost some ground with the walking and the seizure frequency, we have seen some progress in other areas.  I need to get a video of him in OT soon.  His OT has these plastic oreo cookies that come apart and their filling has different shapes in them for you to match and put back together.  The filling is not very thick and getting them apart requires some real fine motor skills and yet the first day that she handed them to him he got one after the other apart.  And Owen has never been willing to put something in to a container.  He can take it out, but he wouldn't ever put it back in.  He is now doing it all on his own without even any cueing.  He has started to say Hi again, so we have Mama and Hi.  He has begun to sign more frequently as well and is using "want" on a routine basis in addition to the usual "more".  He is also using the separate sign for "eat" rather than just using more for eat.  So we are slowly regaining some of the ground that we lost in the seizures last year. 

And I will close with a picture of our birthday boy out on the water for his first time - 5 years old, wow!


Let's Try That Again, In Reverse
So, I'll be ending this blog entry with some really incredible walker action by our little man and then the title will make all kinds of sense.  Before that though we have some medical things to take care of.

When last we chatted about Owen's seizures I described the fact that we were trying out the use of Ativan for short periods when he most seemed like he was going to seize (usually it's when he can't sleep).  Well it turned out that we were having too many seizures while we were in the 7 day waiting period between doses.  It had become clear that it was time for a new plan. 

So last Friday we headed down to Duke to see what Dr. Gallentine had to say.  First he increased the current on the VNS, and then he changed the waveform.  Instead of the current turning on for 250 milliseconds, it now turns on for 500 milliseconds.  So we are hopeful that this will help.  Finally we decided that it was time for some daytime seizure meds.  He had been taking Depakote at night to help him sleep, but none during the day.  In order to introduce it slowly we took the dose that he was getting at night and split it in two, half given in the morning and half at night.  We also switched to the liquid form because it's easier to split a liquid than it is to separate out several hundred little sprinkles inside a capsule that dance everywhere as you try to get them on the food.  If the Depakote doesn't work, then we will try a few months of Tranzene.  The problem with Tranzene is that much like Ativan you will eventually build up a tolerance to it and that tolerance can also effect the ability of the rescue meds to work - but the idea is that we are just buying time until we can work the VNS up to its optimal settings.

The daytime liquid dose began the same game we've always played with seizure meds.  A zombie in the morning when it hits him, then he processes it too fast and he becomes uncontrollably zippy by the afternoon.  As a side bonus though, he started sleeping through the night, which has been a pipe dream forever.  So today we have tweaked the plan a bit.  We are trying the sprinkle form during the day to try and level out the effects, but keeping the liquid at night because we REALLY like sleep.  

The good news is that we haven't seen any seizures in the last few days.  We have also seen some progress in the last few days in his speech, he's making sounds that he hasn't made in a long time.  He crawled up the stairs yesterday, which he hasn't done since last fall.  I think he's been capable but he hasn't shown any interest.  He's also back to roaming the whole house and getting into things again.  He had started to roam some in the last few weeks, but it's non stop now which is a mixed blessing :-)

Walking Progress
Last Wednesday we had a stellar walking day at the mall.  Firstly he wasn't on any meds or seizing, which always increases his performance, hopefully being on the Depakote won't change that.  We also had bought him some new shoes with higher tops to increase his ankle support.  His feet are still tiny (though growing fast) and they don't provide much of a base of support for walking and his ankles are tiny too so they need a bit of help.  We may need AFO's at some point in the future, but right now his PT is afraid that they will actually prevent him from building the strength that he needs.  I do think the hiking boot configuration has helped.  Finally, we decided to try turning the whole rig around.  Owen has always preferred to push something in front of him rather than pulling it behind him, but it is nearly impossible to find a pediatric walker that is designed to be pushed rather than pulled.  So on a whim we tried turning around his existing one.  In the video below it was before we had a chance to increase the friction on the wheels, so Ms. Nacol is in front of him keeping him from going too fast, but look at those little legs go!  And this is only half of the big walk that he did that day!  At the end he did get tired and a bit cranky, but check out the controlled descent when he decides that he's done.

This progress is also a testament to how much the VNS has helped.  Even though we have been fighting seizures, they aren't causing the same damage that they were before and we aren't facing one to two weeks of recovery after each one.  The issue now is that the frequency is so high that we're dealing with it too many days out of the week so if we can just get that down with the meds there's no telling what he will do!
Update on Owen

So it's time to update Owen's info and how he's doing medically.  If you have been following the family blog at all then you know that he is making big strides in several areas.  I'll repost the highlights at the end of this entry for those who haven't seen them because I like to always end on a happy note.  Firstly though, we'll delve into the depths of Owen's seizures and our decision on school in the fall.

I guess I'll start with school.  Last year we tried Owen out in preschool.  In the fall, before the virus season got underway I think it was a good experience for him to be around all of the other kids.  He learned some new words and he gained some skills.  This was great.  And then the viruses started and with them the seizures resumed in earnest.  He eventually lost all of the nifty skills that he had picked up because when Owen seizes he regresses.  By the time we got to spring we were going day by day - will we take him in or won't we?  Every morning we had to ask this question. It was exhausting.  I really began to dread the whole thing.  He was never able to make it through a whole week because as soon as I'd bring him in we'd only get a few days before he would start the cycle of seizing all over again.  In late May I finally called it and said we'd just try again in the fall.

Well we have finally decided that we will not in fact be trying again in the fall.  I will be sad not to be returning because I enjoyed getting out and seeing actual people during the day too, but it is not meant to be at this time.  Owen has made a lot of progress this summer and we don't want to lose it.  We still don't have his seizures anywhere near under control and we can't ask his little body to keep up the pace that he did last year.  And the truth is that Owen is not ready intellectually to learn anything at all that they will be teaching in Kindergarten, and in our county it is inclusion-only so there is no chance of a special needs classroom.  He also missed most of his school based therapies and special instruction last year because they were tied to him showing up for school and he missed more than half of the year.  If we declare him home-based then he will receive those services whether or not he is well enough to make it into school, and without being exposed to all the germs. It has been a difficult decision because it feels like we're moving backwards, but I feel that it will be the best for him in the end.  And he won't be all alone - we will have play dates with Mya and we'll go on lots of outings where he won't have to touch lots of toys that other kids have just put in their mouths.  And maybe, just maybe we'll make it through to June with all of the skills that we started out the year with this time.

So the seizure front is still a struggle.  The VNS has made a difference in his overall awareness level, and it still continues to make the recovery time much quicker than it was and his mood is still better than it was before.  However the honeymoon that we experienced just after the surgery has been slowly fading in terms of seizure frequency and severity.  I was inspired by my friend Melanie who posted cool graphs on her blog (sorry, her blog is private I believe so I won't post a link).  It really made it easy to see just how we are doing with the seizures, which is a really subjective thing from day to day.  The seizures don't feel as bad because he isn't a wreck for a week afterward, but the results on the graphs were kind of startling to me.  I broke them down into two categories: big and little. My criteria was that if the seizure resolved on its own, with no need for Diastat or oxygen then it was a little one. If I had to intervene with meds or O2, then it went into the big category.  I should probably have also added a catastrophic category to break out the really horrifying ones, but I didn't. So this is what we ended up with:




Owen's VNS surgery was in 1/2011.  We weaned the Keppra throughout 5/2011. The really big spike in total seizures was when he was totally off meds and no VNS last year (that was all kinds of fun!)  What becomes rather clear is that particularly since we weaned the Keppra, we are getting quite a few little ones through.  In fact what we often see is a small cluster - two little ones followed by a big one and then a break. 

We really don't want to put him back on full time meds because he reacts so poorly to them.  He cannot go back on Keppra - it made his already touchy GI tract an absolute nightmare and he was completely miserable and in pain most of the time.  We have, for now, tried an interim solution.  Owen's neurological status tends to cycle.  We will get a week of good sleep and then suddenly he won't sleep for more than a few hours.  Once this starts he will start getting more and more manic and zippy and eventually within a few days we will all be exhausted and he will seize. And then the cycle starts all over again.  So, at our last neurology appointment we decided to try giving him Ativan when he starts the cycle of not being able to sleep.  We will give it to him for 48-72 hours and see if that is enough to stop it.  We tried this once for 48 hours and he was fine while he was on the Ativan and for one day afterward, and then he started a cluster.  You can't give Ativan long term and we have to wait at least a week in between rounds of it.  We are currently trying it again.  Last night he couldn't sleep so we started it first thing this morning - which is probably a full 24 hours earlier than we started it last time because we waited for a pattern of two nights. We are also going to try for 72 hours.  I'll let you know how it turns out.

If our Ativan experiment doesn't work out then we'll have to see about adding back in another drug if this trend continues.  Boo.  I discussed this plan with Dr. Gallentine at our last visit and it will probably be Lamictal that we try.  We tried it once before, but it was combined with two other meds and one of them was Trileptal which we suspect was actually making things worse.  We didn't see a whole lot of side effects immediately with the Lamictal, so it seems like a good place to start if we have to get back on that horse again.

On to the Good News
As I said, Owen has made really good progress this summer despite the seizures not being what we had hoped they would be by now.  He has finally started to make some use of his walker now that we have moved to the mall.  He doesn't like to use it at home, it's just too comfortable of an environment where he is used to being able to crawl everywhere.  In the wide open spaces of the mall where he has never crawled though, he is willing to give it a go most days.


He has finally learned how to stand on a step stool without going off the side so that we can wash his hands in the sink - he just likes it because he enjoys playing in the water and looking at the lights and mirror:

This has made cleaning up after our painting sessions a whole lot easier!

He is chosing to play in a high-kneel position more and more often, which is building hip strength:

Next up we have Owen doing his work.  Ms. Pat - Owen's Special Educator - made up bags for Owen for each letter of the alphabet that are just awesome.  Each bag has a box with an item that starts with the current letter:


On this day we had a moon for "M".  He can finally open the box on his own and take out the object!  Then each letter has a book associated with it - this is Owen's favorite part and it is almost always the first thing he pulls out of the bag:


And then he has a book with a page for each letter.  On each page we glue three pictures of objects that start with that letter, and then we have a stamp pad to stamp the letter onto the page.  The gluing is all hand over hand, but he will occassionally make an attempt to put the stamper on the page if he's in a good mood.  We hadn't started the page for the letter "M" yet when I took these pictures so I showed him looking at the letter "L".  He really loves to look through the book he has made.  No, I don't think he has any idea what the letters actually are or what they mean, but he likes the pictures and maybe he does realize that it is something he made and likes to admire his hard work!



We have also done a tremendous amount of painting this summer. He still won't actually put the paint brush on the paper under his own power, but he will now let me do it hand over hand with him so he is at least getting the experience of the different wrist motions that are involved. He will occassionally pick up the paint brush and use it to paint his own hands, which is messy but still counts as tool usage I think. 

Finally we have moved Owen to the family table, rather than in a booster seat with a tray attached.  He has finally reached the point where he will leave the plate on the table, rather than just using it to dump all of the food on the floor in one go.  He only uses the fork to bang on the plate and make great, loud noises, but he does seem to be interested in at least touching it again.

So that is where we stand now.  I know that if we could ever get the seizures under control we would start seeing the huge leaps that we have seen in the past when they calm down - so now we just need to get there to keep the ball rolling! 

Today our family and Saint Francis Service Dogs were featured in an article in the Salem Times-Register.  We were thrilled to be able to share our great experiences with Jigsaw with so many people.  You can read the article here.

I will close with this picture from today's walking therapy:


So Where Are We Now?
Today we went down to Duke to meet with Owen's neurologist.  We were lucky enough to be able to meet up with two other families that were also at Duke today for appointments and I'll get to that fun part at the end of this entry, but I also realize that with all the excitement about Jigsaw that it has been a while since I have done an update about Owen's medical stuff.

Owen continues to have some fairly nasty seizures when he gets a virus.  Stomach viruses in particular produce the most spectacular seizures for some reason.  After watching the cycle start all over again when we started having him in school full time again, we decided that it wasn't in Owen's best interests to be in school at this time.  We pulled him out for the last two weeks of school, and we're going to play it by ear as to whether or not he needs to return in the fall. 

So, you may ask, was it worth doing the VNS given that he is still having seizures that are occassionally spectacular and are still not stable enough to take a vacation without having to bail early the way we did in early May?  Yes it was.  We've had two huge seizures in the 5 months since the VNS was implanted.  Our average was every 7 - 9 days before the VNS.  We would go through long periods where we expected a seizure with convulsions and significant oxygen drops every week. Now if he's not in school and not being exposed to viruses we often go two to three weeks without a seizure and they are generally mild. So we're still way better off with the frequency. 

Next would be the meds themselves.  Owen is incredibly sensitive to even small doses of seizure meds and starts experiencing big side effects almost immediately.  The Keppra that he was on starting last Thanksgiving, at a mere 1.5 ml twice a day, caused enough mood problems to need 100mg a day of vitamin B6 to counteract that.  The 100mg of B6 caused nausea so he needed Nexium once a day to counteract that.  And the Keppra constipated him so badly that he was in nearly constant pain from his belly even while taking Miralax at every meal.  He was absolutely miserable on Keppra.  Trileptal made his seizures worse, Depakote made him so sleepy that he couldn't get off the floor, Zonegran zipped him up and ruined his coordination.  At this point we have weaned all of his seizure meds except for a very small, non-therapeutic dose of Depakote at night to help him sleep.  The last time we tried to wean him off the meds it was a disaster, he started seizing almost non-stop and regressed horribly.  He hasn't done any such thing this time.  His background state with no meds is still much more coherent with the VNS than it was on meds before the VNS.

Finally we still continue to see that his recovery time is much faster with the VNS than it was before.

In my discussion with the neurologist today we really talked about the virus thing.  Nothing has ever made any difference with the viruses and the seizures they produce. The VNS has made the recovery time quicker, but hasn't stopped the speech regression.  He did say that there are a lot of kids for whom a virus just means a seizure no matter what they try.  That's the bad news and means that we may not be able to have him in school.  The good news is that many kids outgrow having these seizures all the time as their immune system matures and they aren't catching something every other week. 

And his buddy Jigsaw continues to stay by him during his seizures.  She had been sleeping in this position, but she always opens her eyes when she hears the bleep from my camera that says that it has focused. 


Intellectual Development
I posted last fall about all the words and signs that he knows.  The problem is that every time he has a big seizure he loses just about all of them because his seizures occur mostly in his temporal lobe, which is where speech is processed.  He has a few basics like "ma ma", "more" and "cookie" and "up" that he seems to keep, but all the rest are just like starting over from scratch each time.  As such we never really get all that far with them. 

He does not know his colors or body parts.  The most complex command he can really handle is "stop that".  He still does not seem to have the idea of objects having a specific purpose - to him a spoon is not a tool to be used to move food into his mouth, it's a shiny object that has a neat shape.  He won't try to make a mark with a pencil or crayon, he doesn't build block towers. 

He does have some really good problem solving skills though.  If he wants something and he has to move something else to get to it, or pull a string to get it, etc he will be able to do it.  He will search for hidden objects, and has a good memory as to where his favorite items are.  Even when we were out of school for three months, the day he returned he unerringly crawled straight to his puzzles which are not visible from the main room and meant he had to go into another room.  He can take the puzzle pieces out and play with them, but he can't put them back in. 

Fine Motor Skills
He can push buttons and knows that they activate lights and sounds and such on his toys.  He can push the keys on his pianos and keyboards and loves to do so.  He does not have any rotary motion though so he cannot turn knobs.  He can turn the page in board books, though not in paper books.  He looks at board books by the hour and has a large collection.  He does not have a reliable pincer grasp and will generally use his whole fist.  He doesn't get the idea of a writing utensil and so doesn't really do more than hold it in a fist grasp with you holding his hand.

As I said above, he doesn't get the idea of a spoon or fork as having a specific purpose.  He has the coordination for it, and if you work really hard at repeating the motion of putting a spoon into the food and then into his mouth he can repeat it.  If you move the plate though, he will scoop the empty air and put it in his mouth.  He is however, capable of shoveling any type of finger food into his mouth with his hands and he is quite efficient at this.  He will pick up a piece of food, take a bite off and put it down and then repeat the process without shoving the whole thing in his mouth.  He can reach into a bag and pull out items inside while using one hand to hold and stabilize the bag.  He can drink from any cup with a straw independently.  He currently weighs 37 and a half pounds so he is putting on the pounds nicely, just ask my back and my knees and my hands from lifting him :-)

Gross Motor Skills
We have seen huge progress in this area.  He now does a proper crawl with his belly completely off the floor, and can do this at rather high rates of speed. He can get himself into a high kneel position and play with a toy.  He can pull up to stand on almost anything.  He will climb absolutely anything that he can find to climb on.  His favorite place to hang out is on top of our coffee table.  He can cruise anywhere as long as he has something to hold onto.  And, we are finally making progress in his walker!  Check him out in action here:

He is so very close to walking now. We have signed him up for twice a week physical therapy for the summer to try and kick-start his mobility and get him walking soon!

So that's really where we are now in his development.  Since getting rid of the Keppra and the tummy pain that came with it he has stopped having days/weeks at a time where he just whines all day and bites his wrists because of the pain.  He is back to his lovable self that will seek you out with a "ma ma", crawl up to you and put his arms up to be picked up.  Of course he's a busy boy now and he won't stay long before he crawls off again for another adventure, but the smiles are back. 


And finally we are up to today's visit.  By the sheerest coincidence Owen, Kendal and Blake all had appointments at Duke today.  Owen and Kendal even had appointments with the same guy - Dr. Gallentine the neurologist, and all within an hour of each other.  Such an opportunity could not be missed to finally meet up so we all got there early to have lunch.  It was a bit hectic trying to get five kids (Owen and Kendal brought their sisters along), a dog, three Moms and a Grandma all through lunch and to the appointments, but I'm glad we made the effort.  It's always awesome to meet with other Moms, to get to see the kiddos that you've seen online in action in real life, and for the siblings to get a chance to see other kids whose lives are like theirs.  Blake and Kendal are just adorable and both loved Jigsaw.  I wish I had thought at some point to take a picture of Jigsaw on her first visit to Duke - where she was wonderfully received by hospital personnel, doctors and the kids in the waiting area - but Kendal's Grandma did get an awesome picture of the kids and their Moms by the fountain in the lobby at Duke:


So Much To Tell
I hardly know where to begin - so much has been happening lately and all those things seem like they should be first in this entry.  So I'll go with tradition and do the medical stuff first and work our way through therapists and meeting another hydro family to finally sharing a picture of the wonderful dog that Owen will begin his training with this week.

Owen's progress since his VNS surgery has been nothing short of remarkable. Before the surgery, and before we started removing meds in the fall, our norm was a major seizure about every 7-9 days.  These had gotten increasingly violent - the last seizure before his surgery, while on Keppra, had almost 20 minutes of full body convulsions including both arms, legs, his head and even his eyes.  His oxygen dropped dramatically.  All of his seizures ended with an 8-10 hour postictal period where he was so deeply subconcious that he could not be awakened no matter what you did to him.

We are now averaging 14-18 days between seizures, so that's a 50% reduction.  They are also nowhere near as severe.  We have not had any convulsions since his surgery.  Even if his oxygen has dropped, we are dropping into the low 90's, not the low 70's or less and the breathing problems are not lasting anywhere near as long.  And better yet is the recovery time.  Instead of 8-10 hours of deep subconciousness - which would mess up his sleep schedule for a week - he only sleeps a normal sleep for one to two hours.  He can be roused if you try, still responds to stimuli and woke up after only 45 minutes after his last seizure because we were on a bumpy road.  Once awake he's right back to baseline crawling around and eating.  Previously it had sometimes taken a week to get back to normal because he would be shaky and uncoordinated. 

Now that the seizures have slowed way down he is back to making intellectual progress again.  He has regained all of his words and signs and has picked up a few new ones.  He now says "dog" and "all done" and signs "thank you".   You can now hand him a granola bar and he will take a bite off and put the rest down instead of cramming the whole thing in his mouth.  He has learned how to climb the inclined ladder into his sister's mini loft bed.  He will now hold a bag of fig newtons with one hand to stabilize it, and then reach in to get food out.  Previously he would just keep pushing the bag with one hand and it would keep moving further and further away from him.  He can pull objects out of the "what's inside" box because he seems to actually know that there is something in there. He just seems to be able to figure things out that have baffled him in the past.

But wait, there's more!

And finally on the VNS, there are the smiles.  Owen had started to have some serious behavior problems before his surgery.  He would swing wildly between rage and manic happiness and as time went on the rage was lasting longer and longer.  He would spend entire days (and nights!) whining and crying.  He couldn't sleep.  This is why he missed almost two months of school.  There are almost no pictures of Owen during that time where there is anything like a smile on his face.  Here are my pictures of Owen from the last two and a half months since his VNS:

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That's right - I've got a smiling boy again!!  And that would have made it worth the surgery all on its own.

His improved frame of mind has also made therapy somewhat more useful.  So here is Owen and the people that he works with at school.  I still have a few more to catch on camera, and I need to get a better picture of Ms. Amy but I didn't want to leave her out.  As an added bonus, we have even more smiles!

Ms. Ryan - Preschool Teacher

Ms. Julie - Music Therapy

Ms. Stacey - Hearing Therapy


Ms. Angel - Occupational Therapy


Ms. Amy - The Other Preschool Aide

And Ms. Pat - Special Educator, Advocate and the one that make Owen crack up!


And now we are up to last week's appointments down in North Carolina. They increased the current on his VNS, and he did a stellar job during his audiology appointment.  Here is another big leap since his VNS. We have been trying for two years to get Owen to indicate in some reproducible fashion that he has heard a sound.  This skill is to be used for testing his hearing with his cochlear implant. We generally have to give him a toy, let him focus on it and then see if the sounds in the sound booth cause a change in expression or him to look up from his toy.  Not the most reliable method of testing.  Ms. Stacey now has him pointing to his ear quite often in practice testing during therapy and he did it THREE TIMES during his testing with the audiologist.  This isn't enough for a full test, but it is three times more than he has ever done before and we are hopeful that he will continue to improve.  He never seemed to "get" what we were asking for in the past and now he seems to understand it at last.

We also had the wonderful fun of meeting another hydro family while we were down this time.  We were actually supposed to meet a few new families and meet up with a few old friends too, but due to an incredible set of circumstances we only actually got to snuggle one new baby - and I did get to chat with Claire's Mom (and her Dad too on the phone, so we didn't forget you Brad!).  The other families were greatly missed and I hope that we will be able to see them soon. So may I introduce Owen's newest friend, Marlena:



She is adorable and it was great to meet her family too.  Marlena was in for her second cord blood infusion and we peeked in just before they got started.  Owen must have liked her because I found her hospital bracelet in his stroller about an hour later - he wanted something to remember her by!

And now for the dog.  I didn't have a picture of Jigsaw to put up with the story in my last post, but his trainer was kind enough to send me one today.  Here is Jigsaw posing beautifully on the Blue Ridge Parkway:


How could you not love that face?  We will begin our training on Wednesday with this beauty and I can't wait!  I'm sure there will be many blog entries to come about our training.

Finally I'll close with an awesome picture that Daddy got of me and the kids at the St. Patrick's Day festival this past week:


Good News and More Good News...

The first good news is that Owen had a seizure on Superbowl Sunday.  Well, it's not good news that he had a seizure, but it is good news that the magnet was able to stop it.  No convulsions, no breathing problems.  He just threw up and then went to sleep for two hours (we are used to an 8 hour or more postictal deeply unconcious state after a seizure) and then woke up and had dinner.  A big improvement.  Yesterday we went to Duke and they increased his current. Since his background current will now be as high as the current that stopped the seizure that day, we are hopeful that we are getting into the range where it might start preventing seizures from happening.

And in even more good news we are really seeing some rapid progress in Owen's cognitive abilities.  Owen had a fair amount of background abnormal brain activity even when he was on meds in the past.  One has to wonder if the VNS hasn't calmed some of that down.  The other day I mistakenly set a whole granola bar (one of the soft ones) down too close to Owen.  I generally have to break it into pieces or he tries to shove the whole thing into his mouth, and generally succeeds.  He grabbed it, took a bite and set down the rest of the bar.  I just sat and stared at him.  We had tried forever to get him to do this without success and here he is just doing it like it was natural.  And then last week I put him down on the floor in the classroom and he crawled over to the shelves where the tubs of toys are kept.  He sat down in front of the shelf, reached up and used one hand to stabilize the tub and the other to pull it out. So instead of the whole thing dumping on the floor as soon as it cleared the front edge of the shelf, he carefully put it on the floor.  We spent months and months in OT trying to get him to stabilize with one hand and manipulate with the other with no success and yet he did it all on his own and has repeated this feat almost every day we've been in school since. 

And finally, the big kahuna:  I brought Owen's Crocodile walker into school this week so that he could start using it a lot more.  I have 5 hours a day dedicated to just working with Owen when we are at school, but at home there are 100 other distractions so I thought I'd have more success there.  I brought it in on Monday and we were gone on Wednesday and look at where we are already:

If the mat hadn't been in the way, who knows how far he would have made it. Considering I brought it in on Monday, he was too sick to use it on Tuesday and Wednesday he spent at Duke, that's not bad for two days effort at school! 

One Step Closer...
Firstly, on the VNS front, Owen did have a seizure last Saturday.  We didn't expect that the VNS was turned up high enough to be able to stop seizures at this point.  We did manage to avoid convulsions this time, though it was weird because he threw up, we swiped the magnet a whole bunch of times and then he went to sleep.  We thought it was all over, but he woke up 45 minutes later all spaced out and then he would suddenly snap out of it, reach for his toys laughing and then suddenly go back out of it again.  And then he finally started having trouble breathing and we gave him the Diastat.  Definitely wierd.  He woke up the next morning just fine though so at least he wasn't shaky for days.  We go back tomorrow to increase the current again.

In more fun news Owen got a shiney new Crocodile walker just before Christmas.  He wasn't able to use it for a couple of weeks because of the surgery, but we have once again started putting him in it and he is quickly getting the idea of what this thing is for.

These two pictures were taken either the evening that he got the walker.  Daddy is holding his hands to get him to take a step:


And he is standing up to play his drum:


Those pictures were taken on New Year's Eve. We had to take a few weeks off for the surgery, and then we tried him again a few times.  Here he is on the 24th of January engaging in his favorite pastime - emptying out the utensil drawer in the kitchen:



He is certainly standing more freely than he's ever done before!  And then here is today trying some outdoor locomotion:


And finally, a little video of Owen getting much closer to moving it about on his own:

Not too shabby for his first time on gravel!
Post-Op and Snuggles!
So today was Owen's post-op checkup for his VNS.  All went well. We saw neurosurgery first and Dr. Grant said the incisions look good and Owen is cleared for school again. Then neurology came in and Dr. Gallentine checked the implant by putting a wand over his chest.  He said that the leads checked out fine and that it seems to be working properly.  He then reprogrammed it to increase the current a bit more.  We'll go back on the 31st to increase the current again.  He will increase it twice more (if I've done my math right on the milliamps) and then we'll waita while to see where the seizures are at.  On the Keppra and out of school and therefore away from the viruses that are his worst triggers, Owen was having one seizure a month. It was a big, nasty seizure, but not all that frequent. Therefore it will be hard to know for a few months if it is helping the seizures and so we'll level out for a while to see what happens.  If he keeps having them then they will increase the current again.  If the seizures level out then we will try weaning the Keppra.

So all seems well in VNS land and if all goes well at Owen's GI appointment tomorrow - we're still having lots of reflux as a side effect of some of his meds - then Owen will return to school on Thursday. He hasn't been in school for more than a few hours here and there since October.  Owen continues to sleep through the night - which has Mommy and Daddy dancing in the streets!

Owen and I actually went down last night because the weather was supposed to be bad this morning. I can remember when we used to stay in hotels and I could lay him down on the bed and take a shower and he'd still be there when I got back.  Now I don't dare to go to the bathroom without some real forethought. I turned my back for a moment last night to unpack things and turned back to see Owen sitting up in the chair looking quite pleased with himself:

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Or maybe he was just laughing because he was tickling his own foot - another little talent he has developed.

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I took the pictures with my iPod so they aren't the best, but you get the idea.

I also used to sit in the waiting rooms and crochet and read while Owen hung out in the stroller and napped. Not so anymore, now he's a boy on the move:

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He was cruising from one bit of furniture to the other and I had to wait for him to sit still for a minute to get a picture!  Certainly a lot less boring these days!

Today little Claire (from a few entries ago) was getting her stem cell infusion. This is always an exciting occassion and we got to see Dr. Kurtzberg again when she was done with Claire, which is always nice.

The last time I saw Claire was 12 days ago before she had been shunted.  I could only see her for a few minutes before they shooed me out so that they could do an MRI. Here is the picture from that day: 


It was great to meet her, but I didn't get to hold her because she was a busy little girl that day.  Today I got in some serious snuggle time:


And this time she was awake and alert the whole time I was holding her. She spent most of the time just gazing at me and I even got a few smiles!  (Yes, you can tell me that's just gas at this age, but I'm still gonna believe they were smiles!)


After these pictures Owen and I went off to our appointments, but then I just had to sneak in one more snuggle before I left. 


And finally I caught a cute picture of Claire giving us a big yawn!


It was a wonderful visit.  I can't thank Amy and Brad enough for letting me share in the joy of their little girl.  And I thank Brad too for giving up some of his precious time with his little girl to watch Owen so that I could see Claire.  I have met so many wonderful families through this site and I cherish each and every one.

And so now we have the first family photo of Amy, Brad and Claire:


I wish you well and I hope we see you again soon!

And finally another bit of great news that I just read a moment ago... Matthew is going home today and is doing well.  Really, what a great day!
One Week Since the VNS Surgery
It has been one week now since Owen's VNS surgery and what a week it has been!  I have hesitated to blog because you don't want to believe it's true.  You want to wait one more day just to be sure that it really is going to last.  But it has been a week now and it's time to spill the beans.

Owen has slept through every night of the last week.  Is it the VNS?  Is it the Depakote that we added the night before he got the VNS?  Is it a combination of both?  Who cares, OWEN SLEPT THROUGH EVERY NIGHT FOR THE LAST WEEK!  And that my friends, is priceless. 

And his mood. Oh his mood.  Owen has been happy without being manic, and angry without losing his mind.  I do believe he has been enjoying himself. 

We learned a few things by accident during this week too.  His throat was really sore from the breathing tube and he wouldn't eat anything solid for two days - thankfully his main seizure med, Keppra, is a liquid.  He would not take his Clonidine (for mood leveling) in the morning.  Without the Clonidine he did not take a nap in the morning at 9:30 am, which was making school impossible.  When he did finally take the Clonidine two days later, he took a nap again in the morning.  We stopped giving him Clonidine in the morning. He did not lose his mind like he had in the past.  We did learn that he needs his B6 though -which is given to help with Keppra rage. Owen is still not a happy camper when he doesn't have his B6.  The B6 really upsets his tummy so we are trying different times and different dosing to help, but he is definitely in a bad mood without his B6.

Whether it is the VNS or finally getting some sleep that has Owen in such a good mood is hard to know.  I do know that for 7 days now we have not had a manic swing.  The manic (way toooo happy with constant tics and insomnia) swings were always the worst for sleeping and he would have one every few days.  I can't remember the last time he made it 7 days without a swing into severely Happyland.

But wait, there's more!! 

Before the VNS surgery Owen had lost all of his verbal words, most of his signs and had not pulled up to stand for months.  He had regressed almost to infancy.  In the last week I have heard "mama", "dada", "light", "up", "more" and "eat" verbally.  I kid you not.  The signs have come back as well, though we aren't yet back up to the three word sentences that we used to have.  And look at where Owen spent most of his time today:


Last night he pulled up to stand for the first time in so long it was almost as exciting as the very first time he did it.  And today he climbed up onto the couch - and everything else he could figure out how to climb on!

We've been seeing a lot more smiles out of Owen this week:


And what is he smiling at?  See here what he was doing:

Yes friends, it has been a good week.  Next Tuesday we go down to have his incisions checked and to have his current turned up.  Whether or not this will last is anybody's guess, but I will say this - the VNS certainly hasn't done anything negative this week and I'll be thankful for where we are now which is so Blessedly better than it was a week and a half ago!
Cleared for Launch
Owen is doing well this morning and his neurosurgeon has cleared him to leave as soon as he is done getting his last dose of antibiotics - which should be finished infusing around 10:30am.  There will be the usual fussing about waiting for discharge, but we are hopeful that we'll be out before lunch. 
Surgery a Success and Welcome Claire!

Owen came through his surgery just fine.  Dr. Grant said that all went well and he was happy with the placement of the VNS.  The device is turned on with a very low current.  We will come back every two weeks for the next two months to increase the current slowly.

He is very shaky, but he has been sitting up and drinking and is looking more and more alert:


And here is a picture of where they did the incisions:


He's not quite his perky little self yet, but he doesn't seem to be in any real pain and is resting comfortably.

And in other great news, Claire was born today!  Yesterday this was Claire still in her Mommy's tummy:


And now just down the hall from us is a brand new beautiful girl:


I can't wait to meet her! 

So all in all, a really good day!

Surgery started

The actual surgery started at 11:35 am.  Should hear something more in an hour to an hour and a half....

Owen is Out
I snuggled him while they put the mask on.  He's out now and they are prepping him.  I'm going to go get some lunch.  I'll post when they actually start the surgery.
Meeting the Gibbs and VNS at Last!
It has been a suspense filled lead up to the surgery - again.  The day before yesterday I found that the insurance company had denied the approval for the VNS surgery.  They felt that we should try the resective surgery first.  Since that surgery requires removing the focal point for the seizures from the brain, and Owen's focal point is the entire right side of his brain, this did not seem like a good option to us.  After much scrambling by our neurologist and neurosurgeon and their staff the doctors were able to convince them that this surgery actually was the best way to go.

I know we had said that we were considering the possibility of trying the meds for a while longer, but he had a big seizure with 20 minutes of full body convulsions (even with two Diastats) last Sunday.  Even if the VNS doesn't prevent the seizures altogether, you can use the wand to shorten them and that is becoming increasingly important.  And it should help even out his mood.

So we are sitting in the waiting room.  We've talked to Dr. Grant - the neurosurgeon - this morning, signed all the forms, and now we're just awaiting our spot in the OR which should be in the next few minutes.  Owen is not minding the wait at all:


He fell asleep out in the main waiting room and has stayed asleep while we've been checked into a pre-op room.

Last night I had the wonderful fun of meeting the Gibbs family.  Their daughter Claire is probably being born even as I type this, or will be very soon just two floors up from where we are sitting.  I met them through the website and since we were all here we thought it would be fun to get together for dinner.  Here is me, Amy and Owen (and Claire still snug in her Mommy's tummy)


And a group shot of Amy, Brad, Owen and Claire:


It was fun to sit and chat and I'm really hoping that we get to meet Claire before we leave. 

At the end of our visit I was walking out the door when I realized that Owen's drinking bear was gone.  Amy and Brad were so very kind to help me search high and low for it, but it was nowhere to be found.  So Owen and I made a quick trip to Kroger where I bought a honey bear and some straws to make temporary replacement:


As you can see, he drank almost the whole thing this morning so it looks like we have something that will work for the next two days. 

After Owen's surgery we will be admitted overnight.  This is normally an outpatient procedure, but since we'll be working on the same side as his shunt tract they want to give him IV antibiotics just to be sure that the shunt is safe tonight. 

I'll update more as things progress today.  They say they'll be back in 20 minutes to bring him to the OR.  The surgery lasts for an hour to an hour and a half, and the prep will take 45 minutes and the cleanup usually takes a bit too. 
It's All the Rage
It has been almost a month since I last blogged.  Usually I apologize for long lapses, especially when there has been a lot going on that I should be blogging.  This time I won't.  Believe me, it was better for everyone that I didn't.  I have spent the last month, well two months really, in what author Douglas Adams affectionately called the "Long Dark Teatime of the Soul".  Usually I can stay positive through the pediatrician visits where kids a quarter of his age call Owen a baby because he's in a stroller and they aren't.  I can generally tell myself, "But just look at what he can do!" when I cut up his food and realize that I'll probably still be cutting up his food when I'm sixty.  But for the last two months I have failed at the whole positive mental attitude thing.  The last two months have been, in short, a long hard slog.  Thankfully, things have improved, but I don't think I was ready to blog until they did.

You see, until just a day before Christmas Owen had spent a great deal of time screaming with some unknown problem.  Was it rage from the Keppra?  Did he have a headache?  Was it because he hadn't slept in a week?  Why hasn't he slept more than a few hours at a time for the last week or two?  Was it the shunt?  Was it his belly?  Owen can't talk.  He can't tell us what is wrong.  And can there be anything more frustrating that knowing that something is very wrong but not being able to figure it out? It went from just some whining here and there to outright rage attacks once or twice a day to rage attacks several times a day and night.  And he just couldn't sleep even though we were pumping huge amounts of sedatives in the boy.  My nerves were shot.  The positive mental attitude goes out the window at 2:30am while your kid is biting himself, you and anything he can get ahold of. I did not comment much on blogs or on Facebook. 

So we went through the usual checklist.  We checked the shunt just before Thanksgiving.  We tried every med known to man in attempt to get him to sleep.  And then we noticed that he hadn't put out any poo in a few days so we gave him an enema.  And he put out 2 pounds, 2 ounces of poo (Sammy thought it would be funny to weigh it).  This was about two and a half weeks ago.  The next day we gave him another enema just to be sure and got another pound.  We gave him another day or so and still he didn't go on his own.  This started a long string of Miralax and enemas that produced very little.  We hadn't thought much about poo at first because although Owen used to have lots of problems in that area, he had been much better since he had gotten more mobile and things had been running smoothly.  But that was before Keppra, which is constipating, and the pneumonia which kept him lying down most of the day.

Finally it was three days before Christmas Eve and Owen was screaming a large portion of the day and night.  No amount of intervention would bring on the poo.  It was time for the big guns to come in.  I took him down to the hospital for an xray of his belly and they found that he was pretty well filled to the brim.  They sent us home with more laxatives and different stuff to try.  They did nothing except make him even more uncomfortable.  It's now two days before Christmas Eve and we head for the ER.  He was admitted overnight for a cleanout. 

They placed an NG tube and pumped three liters (yes, that's three LITERS) of a nifty liquid called GoLytely.  It is pronouced GoLightly, proving that manufacturers have a sense of humor.  Oh, and I must say that the poo jokes shared on Facebook by my friends definitely improved the tone of our experience!  Things went well for a few hours.  My brother stopped by with some necessities (when the doc set up the whole thing his nurse failed to tell us that rather than the 1 hour massive cleanout we had done previously, they would be doing it more slowly and we would be admitted for at least a day).  Just as my brother went to leave Owen started seriously raging.  Versed, Valium, nothing had an effect.  My brother gets the gold star for staying there with me to hold him down so that he couldn't pull out the NG tube.  And my Mom and Dad get the gold stars for cooking dinner and throwing the family Christmas party that night while I sat in the hospital awaiting poo. 

At about 5:30 the next morning I woke up to the sound of Owen filling his crib in one horrifying whoosh.  After levitating him above the bed to change out the sheets I got him cleaned up.  It was a lot but I figured that there was more to come.  I had no idea.  At 8:00am the doctor came in.  I hadn't met this GI doc before, but I do like him.  He was covering for our normal guy over the Christmas holidays.  He came in and said he needed to do a little checkup to see how Owen was doing.  If you are squeamish you probably should skip to the next paragraph, but it's just too funny not to share.  So the doc puts his finger up Owen's bung, and then a few fingers, and then suddenly he reaches in and says "This will make him feel better".  Apparently there is a button that you can push somewhere about wrist deep in a kid's abdomen that will release the world's largest fountain of poo.  It hit the crib walls, the floor, and formed a complete lake around Owen.  It was the single most impressive thing I've ever seen.  And he was right about how it would make Owen feel.  I sadly didn't get a video of the fountain, but after cleaning him up, this was Owen's expression:


A few hours later we headed home.  He was much better that night.  He was still somewhat cranky on Christmas Eve, but it took a while to completely clear all 3 liters of that stuff.  Our Christmas miracle was that Owen was in an absolutely great mood all day.  No rages.  I didn't get bitten, scratched or pinched all day.  How cool is that?

Owen has continued to be much happier.  He still doesn't sleep past 4 or 5 in the morning, but he's just up there playing instead of screaming.  I don't know that he could be in school yet because he still wants a nap at about 10:00 in the morning. 

His VNS surgery is scheduled for January 5th.  We are on the fence about it.  Owen has not had a seizure since starting the Keppra.  Without the pain of the belly issues, he is actually in a pretty good mood most of the day - the Clonidine is doing its job at leveling out the mood.  But there are some down sides.  He doesn't seem to want to pull up to stand much anymore.  He can't seem to quite get himself onto the couch - he's lost some strength during the last two months.  And he still has a tendency toward going off the handle if you ask him to do anything he doesn't want to.  And he still can't sleep. And it constipates him. We are going to reassess at the end of this week.  

So, I apologize for not being around the cyberworld much lately and for being a grump to those who have dealt with me in person.  As Owen's mood improves so does mine for the most part.  I still have some issues to work out - I have degrees in physics and computer science and I expected to use them.  Being a babysitter and housekeeper with no creative outlets just doesn't work for me.  I love to teach too, and I enjoyed being with Owen at school - but he hasn't been in school since October.  And teaching a child that if I work with him all year might manage to put the paintbrush onto the paper to make a mark without me holding his hand is not exactly sharing my knowledge with others. Though it is still way better than being in the house everyday.  And yet there is no way that I could have a regular job even if we got an aide to go to school with Owen.  Owen has been in and out of the hospital over and over again during the last few months.  How could I make a coding deadline and commit to deliver anything if I have to keep taking time off without warning to take Owen in to get cleaned out or scanned or whatever?  And that's not even counting therapy and doctor's visits.  My only hope is that he will settle down enough soon that he'll at least be able to go to school, and maybe we'll find a respite worker again that can give us a break now and then.  

 And now I have said my piece.  I thought long and hard about whether or not to share my teatime on this blog.  But I committed early on to sharing the good with the bad and it's not realistic to think that you will go through year after year of dealing with medical issues without occassionally having some rough emotional patches.  While I was in the hospital with Owen once a doctor suggested that I see about getting anti-depressants because I seemed a bit down.  I asked him if it would make Owen's situation suck any less.  I pointed out that clinical depression is when you are depressed even though you are in a situation where you should be happy or at least neutral in normal life.  Being thrilled while you're dealing with a very depressing situation is a sign of dementia in my book.  It wasn't normal for me to be happy about that situation and it is perfectly normal to have times when it just isn't easy to cope with looking at a lifetime of having your life interrupted by medical issues. 

I always try to leave on a positive note and today I will do the same.  We were very thankful to have Owen's biggest issues taken care of by the time Christmas came.  I will close with a picture of a very happy Owen hanging out with his sister and grandparents on our couch:


For now I'll just be thankful that he is no longer in pain and that he can smile again!

It's All in the Details
A few people have mentioned some details that I have left out of my posts.  I feel somewhat like our local news people that tell you about an exciting new store opening up but don't bother to tell you its name or where it's located.

So, to clear up the confusion - we are home.  We came home late Sunday night after the seizures.  Owen has not been admitted for his pneumonia, we are hopeful that we caught it early enough that lots of rest, fluids, antibiotics, humidifiers and warm air will take care of it.

Owen's neurologist wrote back to us this afternoon and said that he thought it was a good idea to put Owen back on the Keppra until the surgery.  We didn't like the side effects of the Keppra, but we hopefully have a strategy to minimize them this time.  We didn't like the side effects of the other meds we tried either, but at least the Keppra had the added value of actually stopping the seizures.  We started him on it tonight.

I am more at Peace tonight.  We had wished to have the surgery sooner but you don't always get what you wish for.  We have a plan, and that's just the way it's going to be and so that's that.  Time to move on to other things that I can actually change.
Fun, Fun, Fun!
So, the aspiration during the seizure must have been worse than they thought in the ER because Mr. O now has pneumonia.  Which means that he won't be having any type of surgery any time soon. 

The next available slot for the VNS surgery was December 22nd.  I wasn't comfortable with this because it is three days before Christmas - if there are any complications there isn't likely to be anyone around to deal with them.  So I had opted for a January 5th surgery date.  I had tried to argue for sooner than the 22nd, but that was before I knew about the pneumonia.  Owen had been doing better yesterday and was finally up and cruising around like his normal self - but his temperature was still higher than it should be.  Still, I figured that it meant that things were taking a turn for the better.  Well this morning his temperature was shooting up again and he was miserable.  His cough was much worse and he fell asleep after breakfast and was panting a bit.  It was time to assume that this wasn't just a cold.

The pediatrician confirmed that it is in fact pneumonia.  It's still in the pretty early stages so we are hopeful that a round of oral Clindamycin (antibiotic) will take care of it. 

In the meantime we're talking to the neurologist about possible meds that we could put him back on until January to slow down these seizures a bit.  Hopefully they will come up with something soon.  I have suggested perhaps going back on Keppra.  It caused him to rage in a scary way, but it was the best at stopping the seizures.  Owen is on Clonidine to level out his rage and manic (too happy) swings and that is working well.  I am wondering if the Clonidine might not also level out the Keppra rage.  If so, Keppra can be brought on fairly quickly and might be of help at least for a while.

Hopefully I'll be able to post some cheerier news soon!
No Surgery for Owen Tomorrow
We were on our way to Durham for Owen's VNS surgery tomorrow when he had a pretty nasty seizure. After 25 minutes I got him to cough enough to clear what he had aspirated, but then he started seizing again. Two seizures in 25 minutes and his core temp crashing = trip to ER. Owen's temp is 101.6 so he is clearly sick and therefore they won't do the surgery tomorrow. We never made it to Duke, we're still in Roanoke waiting to see if the Tylenol brings down his fever.
Surgery Set for Monday

Sorry for the delay in posting details, I took a day or two off for the holiday.

On Wednesday we finally got the situation straightened out for Owen's VNS surgery.  I do not like the way I had to go about that.  I do not like to get what we need by being that forceful.  I simply felt that it was time that neurology began to feel the urgency that we did about the situation.  Since we began trying to get more aggressive about Owen's treatment in August it seems that every step has been a long waiting process.  Need a seizure study?  Fine, our first available is 8 weeks out.  Had a really horrible event this weekend?  It'll be three days before we call you back and you'll have to call a few times to remind us that we need to call you back.  If you don't then it will be five days before we return your call if we even bother.  Oh, and if you call and tell us that the med is making it so that he can't even stand up we'll tell you to double it because we're not listening to you and just heard that he had a bad seizure on it.  I am tired of watching Owen regress while people tell me about their scheduling problems.  The VNS might not help him, he might be part of the percentage that gets no benefit from it.  However, it's certainly not getting better on its own either and if it might help then we must try it and waiting another month isn't going to increase the odds of it working - but having it sooner will possibly save him from a month of anger, seizures and unpleasantness. 

So I wasn't leaving on Wednesday until we had a plan.  The ER docs felt so strongly about the situation as they saw him swing between manic and raging all day and hearing about the increased seizure activity we were seeing that they said they would not release us from the hospital, unless we did it Against Medical Advice, until we either had a surgery date that was close in, or a plan for seizure meds if it was going to be several weeks before the VNS.  We left the hospital with Clonazepam, which you can use when it looks like they are working on a seizure.  Lately Owen's mental status has been changing in the hours before a seizure - almost like he's having absence seizures leading up to the biggee.  He gets angrier and he has trouble focusing on things and stays still for long periods.  We tried this yesterday when it was really looking like he was slowing down and it definitely helped.  They had also prescribed Clonidine on Monday night to help level out some of the rages and manic episodes - I do think this is helping as well.

The VNS will be implanted on Monday (November 29th). We have to be at the hospital at 9:30am, his surgery is scheduled for 11:30am.  It is a fairly simple procedure compared to the other ones that Owen has had done.  If you want details go to my entry from the other day here and scroll down to the VNS heading.  I'll post updates as soon as I know anything on Monday. 

As always, I thank everyone for the amazing support that they have shown us in the last difficult month.  Let's hope that we are on the path to getting back to something manageable!

A Not So Fun Day
So it all started last week.  Owen had had a great day at school on Monday - best he'd had in ages.  I do not remember much about Tuesday, but I do remember having a good speech therapy session, although he was a bit cranky.  On Wednesday morning he had a seizure on the way into school.  A little one, but I did have to put some oxygen on him. We went home to sleep it off.  On Thursday we tried to go to school but he whined and wailed for the hour that we stayed.  I took him to the pediatrician that day cause he was running a little temp by then and wasn't eating.  He said his throat looked a bit red but the strep came back negative and he thought it was just a virus.  So we went back home.

On Friday we brought Owen down to see Dr. Gallentine, which was the subject of my last post.  Owen wailed and whined through the whole visit but he was sick and he was in a doctor's office so I figured that was it.  On Saturday morning he was back to eating and seemed healthy enough, but that morning he broke into a rage that was so bad that Mommy, Daddy and Owen all had bloodstains.  He bit and scratched us and him and bit through his lip and wrist til they were bleeding.  This was a fairly ugly scene that we had not experienced since he was on Keppra.  The rest of the day he bit his wrists and palms on and off and was generally pretty fragile in what would set him off.  On Sunday he was happy most of the day, but we just left him alone and asked absolutely nothing of him.  He ate fine.  That night I picked him up to put him into bed and he suddenly went off in a rage that lasted for a half an hour and once again left both me and him bruised and bloody.  Not good. 

On Monday (yesterday) I called the neurologist's office in the morning to say that things weren't going very well and that we needed to address this issue.  That rather than waiting until sometime in December to do the VNS, maybe we should do it SOON because it has a real mood leveling effect.  I got a call back from neurosurgery scheduling that morning, but they called my house and I was at school with Owen and by the time we came home at 1:30 she had left for the day.  As for Owen as school - I only brought him in for about 2 hours and I didn't try to bring him into the classroom or the cafeteria where he might get too much input. I just brought him into the quiet therapy room and ate lunch while I talked to his special educator (Ms. Pat).  After lunch Ms. Pat and I took Owen out to the playground to sit in the warm sun - it was almost 70 degrees out.  When she tried to pick him up he tried to bite her.  He loves Ms. Pat.  Then the music therapy people were there so I thought he could stay for that session because it's his single most favorite thing in the world.  He whined and cried through most of it and did not participate at all.  We went home.

By the time we got home at 1:15ish, Owen just didn't look right.  The eyes are open but nobody is home look.  He would drift away and then suddenly seem to come back to himself. Even earlier that morning at PT, which we do at home, Ms.Nacol said that Owen just wasn't making eye contact.  But still I could rose him if I poked at him so I wasn't sure that it was a seizure.  At 4:28 though the seizure finally came - desat, shaking, wretching, the whole bit.  It passed very quickly and I didn't even need a Diastat, but it was definitely a seizure. 

I called neurology for the second time that day and asked 1) why on Earth hasn't anyone called me back yet, and 2) um, he's been raging for 4 days, ends in a day where he looks wrong all day long -  can't we fix this?  I yelled a bit.  About 15 minutes later the neurologist himself calls me back.  He prescribes a drug that should level out his moods, though it doesn't do anything for seizures, I can't remember right now what it's called.  We agreed that a CT scan was in order to be sure that the shunt wasn't aggrevating anything and that he would try to get the VNS fast-tracked and we would use this other drug in the meantime.  Owen woke up in the best mood ever 4 hours later, as if a reset button had been pushed.

So, this morning I headed out for Duke at 7:30 am.  Owen was barely awake.  As the trip went on it became clear that he was now in the "manic phase" of his swing.  This is where he is just unnaturally happy.  His body is in constant motion, arms, legs, head, everything.  He cannot stop and sit still.  This is a bad day for a CT scan.  We had to go to the ER because they couldn't schedule a slot for us today.  So to the ER we went. 

They got us in for a shunt series fairly quickly and since that takes a split second they got their images easily enough.  The shunt tract appeared intact.  Then we tried for the CT scan.  First we just tried without any sedation.  Complete no-go he was just waving his arms and legs and moving his head back and forth the whole time.  So we brought him back and tried some oral Versed because we know that it isn't easy to get a line into Owen.  He went out OK, but when he was supposed to go into the scanner they had an emergency with a brain bleed come in and he got bumped (yes, I'm OK with this - we're not that bad off!)  By the time the scanner was free again the Versed was starting to wear off. So they tried twice to put a line in him to give him something that they could control better, but twice they failed to get a viable IV.  Then they tried to give him some more orally to top him off, but somehow spilled some on his shirt when they gave it to him so we don't know how much he got.  And so we tried the scan again.  This attempt was the same as the last.  Although he was pretty calm all the way down to the scanner, he woke up as soon as we laid him down and started his bit of waving arms, legs and shaking his head.  We didn't even try as it would be extra radiation for no good reason. 

Back we came and tried for an IV again.  Since he still had some Versed in him he didn't fight and they got a good viable line.  And so we waited for the scanner to be free again.  The nurse stuck her head in and said that Owen would be next and she went to get the IV Versed.  While she was gone Owen's pendulum swung the other way.  He went from too happy to screaming rage.  By the time the nurse came in I was just trying to hold him down enough that he wouldn't fall off the bed.  He blew the IV.  So, with our options dwindling the doc says our last hope is to try an intramuscular shot of Ketamine.  Not a fun idea, but it would work.  Owen has never had Ketamine before.  Since it's full sedation they had the ER doc, a person from respitory and several nurses in the room while they did the scan.  This was because there is a less than 1% chance of a severe reaction.  Leave it to my boy to find his way to less than 1%.

The scanner finished whirring and a few seconds passed by.  I was just starting to walk toward Owen when the whole crew rushed in from behind the barrier.  I looked and the pulse-ox read 58%.  For those who have not seen a Ketamine sedation, I don't recommend watching one. It's visibly pretty awful to watch.  It also increases their secretions.  And since Owen was on his back the extra saliva was making it hard to breathe.  In addition there was some swelling in his larynx.  Sats were down to 45% as they were putting oxygen on him.  They reposition him and his sats start to climb back up.  When they hit 100 they put him in my arms so that I could hold him in a good position for the short run back to the ER where they could work on him better.  Once back in our room they started suctioning him and that eased things up quite a bit.  They had to suction him for about another half an hour before he was awake enough to start swallowing again.  I finally started breathing at this point.  I am very pleased at how prepared they were for that less than 1% possibility though - very nicely handled!

We won't ever be using Ketamine again.

We got the scan though and it turns out that the shunt is fine.  I was 98% sure that it was, but that 2% could have done a whole lotta damage - look what we did with less than 1% chance. 

So as he's waking up I'm describing the situation that led us to coming into the ER in the first place to the Attending.  He thinks that leaving the hospital with him possibly having been seizing or certainly in neurological distress for the better part of the day yesterday is probably not a good idea.  I tend to agree.  Neurology sent down its recommendation - put him back on the Depakote.  To which the Attending replied - isn't that the one that made it so that he couldn't even stand up at a tiny dose?  I'm so glad that at least he grasped so quickly why it was that I wasn't thrilled with this suggestion .  As it was about 9:00 pm by this time he said that we should just admit Owen and then get some answers when the daytime neurology people were on.  I felt that this was a sane suggestion.  In the meantime neurosurgery said that they would get back to us with a schedule for the VNS tomorrow.

Owen woke up and ate dinner and then promptly passed out.  He did not sleep at all last night because the seizure knocked him out from 4:30pm to about 8:30pm and then he was awake until about 3:00am.  He did not nap today (even with the Versed on board!) and I don't think the Ketamine adventure was particularly restful.  He is sleeping peacefully and Bless the attending for telling the people up on the floor that no, Owen does not need an IV put into him in case he has a seizure and they should just let him sleep.  They can use Diastat like the rest of us do. 

So I'm left in a bit of a difficult position.  I know that his neurosurgeon would get us in quickly if he could.  I appreciate the fact that he is only one human and he can only do so many operations a day.  I feel that they need to get a third neurosurgeon so that Dr. Grant can occassionally get some sleep.  I know that there are other kids that need operations too and I don't want them to suffer either.  But I also know that Owen can't do this sort of thing much longer and stay sane.  And I know that his family would really like some sleep (I think I have slept through the night once in the last month).  Can't we somehow have it all?  Can those kids get their surgeries and Owen get his without waiting til next week at least and possibly longer? 
Controlling Seizures Without Meds 101

When last we met we had taken Owen off the meds because they weren't helping, and were exploring other methods of seizure control.  The last two weeks have been quite an education.  Those of you who don't care about all the details about the various types and how they are implemented can skip to the bottom to "OUR DECISION" to find out what we are doing now.  Otherwise, strap yourself in for an alphabet soup of methodologies. 

An oldie but a goodie as the saying goes.  Developed in the 1920's, all but abandoned in the later 1930's after the development of anti-epileptic drugs (AED's) this diet has seen resurgence since the 1990's when some high profile cases got a lot of publicity. The Ketogenic Diet (keto) is usually described as a high fat, adequate protein, low carbohydrate diet. And by high fat they mean a 4:1 ratio of fat to carbs/protein. In other terms, the diet is usually around 90% fat.  Why?  Normally the body burns mostly carbohydrates for energy.  By removing most of the carbohydrates from the diet, the body is forced to burn fat for energy.  As the fat is burned the body produces ketones.  The general idea behind this diet is that for some unknown reason these ketones help to prevent seizures.  In fact there is a very good success rate with this diet.  Percentages vary depending on who you are quoting, but it seems that about 2/3 of people have a significant reduction in the number of seizures that they experience, and it has a very good rate of stopping seizures altogether.

The diet is initiated in the hospital, with a 4 or 5 day admission during which the ratios of fat to carbs and proteins are tweaked until they get the desired number of ketones.  The high fat diet is nutrient poor and so multivitamins must be administered.  Periodic blood tests must be administered to test for nutrient levels and to check for ketoacidosis - a condition where the blood pH is lowered due to the presence of too many ketones.  To be certain that there is enough protein in the diet for normal growth, weight and height must be monitored. Other possible side effects are constipation, nausea and low energy due to lack of carbs.  All food has to be weighed and portioned exactly and cheating on the diet will most likely bring back the seizures.  To achieve the necessary levels of fat large quantities of heavy whipping cream are usually consumed, butter, eggs and mayonaise are other common ingredients.  Since Owen is allergic to all of these things, we would have to make it up with coconut oil, MCT oil (see below), RCF (no carb soy formula) and other creative measures.  If a child is entirely tube-fed, then this diet is much easier to achieve.  You switch their intake to KetoCal formula in specific quantities and that takes care of most of it.

This diet is not usually used in the United States, but is common in England and Canada.  It works on the same principals as the ketogenic diet, but it uses a different type of oil.  The animal fats in the keto diet are LCT's - Long Chain Triglycerides.  The MCT diet is based on Medium Chain Triglycerides.  You don't need as many MCT's to produce the ketones as you do LCT's which is an appealing aspect of the diet.  However the MCT's come in the form of spreads and oils which some find less appetizing and some say that the MCT's are harder on the tummy.  The MCT diet was a better solution for Owen because the oils are vegetable based and therefore he would not be allergic to them.  This diet is administered in much the same way as the keto diet with the same precautions.

This diet, also known as MAD was developed by Dr. Eric Kossoff at Johns Hopkins.  This doctor was very helpful to us, answering questions via email even though he doesn't know us and Owen isn't his patient.  He was the one that introduced us to the possibilities of the MCT, LGIT (see below), and keto without diary diets.  This diet also works on the basis of producing ketones, but is less restrictive on the carbs than the classic keto.  He found that many people were able to obtain relief from their seizures while producing fewer ketones than on the keto diet.  It is still a high fat diet and still has very low carbs, just not quite as low as the keto and the portion control is less strict than the keto and MCT diets.  Since it can produce the same side effects as the MCT and keto it must be monitored in the same way. While many people do experience relief on this diet, it does have a bit lower of a success rate than the classic keto and therefore some people will start on the MAD and then move to the keto if they still need better control.

The Low Glycemic Index Treatment was developed in 2002 by Dr. Elizabeth Thiele and dietician Heidi Pfeifer at Massachusetts General Hospital in Boston.  This diet does not attempt to produce ketones, but still drastically reduces the amount of carbs that a person eats.  Since no one really understands why it is that the keto diet works, no one is sure if ketones are the actual mechanism that stop the seizures.  There is also a school of thought that it isn't the ketones at all, but a lack of sugars in the brain that stop the seizures.  While the success rate isn't quite as high as the classic keto, it does work well for many people.  The ratios in this diet are 60-70% fat, 20-30% protein and 10% carbs.  Portion size is used in a more general sense and weighing is not required.  Since ketones are not produced it is usually administered on an outpatient basis, though you still have to watch for vitamin and mineral deficiency.  Many people take the path of trying the LGIT first, then moving to the MAD and finally going to the keto if none of the previous two work.  This way you are giving the least restrictive the first try and then moving upward.  Many others start at the classic keto and then once they have seizure control start loosening up toward the MAD and LGIT until they stop having control.

Also known as VNS, this is essentially a pacemaker for the brain.  A small device is implanted just below the collarbone on the left side with electrodes going up into the neck and wrapping around the Vagus nerve.

Photo from Cyberonics, Inc.

An electrical pulse is sent out about every 5 minutes and lasts for around 30 seconds.  The interval, duration and strength of the pulses can be programmed using a magnetic wand without the need for further surgery.  These pulses reduce seizure activity in many people, though no one knows why this works either.  The wand can also be used to initiate a pulse at the onset of a seizure, which will often stop the seizure without the use of Diastat.  The procedure to place the implant is fairly low on the scale of surgeries that most hydrocephalus patients are used to.  It is done on an outpatient basis so that they are implanted and sent home the same day without an admission to the hospital floor.  Since they are working on the chest and neck, the CSF is not touched and so there is minimal (though of course there is always some) risk of a shunt infection. 

The VNS does not have as high of a success rate as the diets in completely stopping the seizures, but a large percentage do have at least some relief.  The device is not FDA approved for children, though it has been used in kids fairly widely for many years, so there aren't any numbers to quote but our neurologist says that it seems to work better in children than it does in adults in his experience.  The most common side effects are a change in the voice during the pulse, a tingling in the neck during the pulse and coughs during the pulse. Since the amount of current being applied is programmable they can work to set the levels to keep these effects to a minimum.  These side effects also seem to diminish in most people over time.

So those were our options given the fact that we had tried 5 meds with no help and a 6th wasn't likely to be any better.  While we were doing this research we had also taken some preliminary steps at home. Due to Owen's allergies to milk and eggs, his diet has been very high in carbs for the last few years.  We turned to bread, potatoes and lots of fruits and veg to make up the difference in calories: the Anti-Keto diet.  We decided that without being on the meds we should probably try to stop doing some of that.  We did not attempt to go so far as to produce ketones without guidance - that would be dangerous - but we did try to come closer to the low end of the LGIT diet than we were so that we weren't carb loading him.  The first day was fine, but by the second day he was starting to refuse the coconut milk and refusing some of the high fat food.  By the third day he would have nothing to do with any of it, refused all food and drink and constantly signed for pears, Silk and cookies.  This was not a good omen, though we were also trying this while he had a sore throat and a possible stomach bug so our timing wasn't great. 

How did we decide?  Well in a nutshell for all of you who didn't read all of that stuff above, we looked at these pros and cons:

  • Higher success rate
  • No surgery involved
  • Big lifestyle change
  • What if he just won't eat it?
  • Need for blood tests which he hates
  • Possible side effects:
    • Slowed growth
    • Ketoacidosis
    • Constipation
    • Nausea
    • Malnutrition
    • Lack of energy
  • No lifestyle change, he can eat what he wants
  • We don't have to weigh his food
  • Side effects are less scary
  • No blood tests
  • Surgery, even if it is minor
  • Lower success rate
  • Possible side effects:
    • Change in voice during pulse
    • Cough during pulse
    • Tingling during pulse

What it really came down to was the list of Cons.  We can't just explain to Owen why it is that he can't have any of the food that he wants.  Unlike an intellectually normal child that can reason out why it is that we are ignoring his requests for pears and Silk, Owen just thinks we're being mean and doesn't understand that it's to help him and he gets angry.  The quality of life for him on the diets would be significantly lower as eating is one of his true skills.  Owen knows about 15 signs and 10 of them involve food.  He can't ask for a ball but he can tell you specifically if he wants a pear or a cookie or Silk or granola bar.  And the possible side effects of the diets seemed scarier than those of the surgery to us.

If there is a chance to have the VNS implanted and slow down his seizures enough to make life more bearable, then it seems like we should at least try that first.  It will mean taking one more step towards being the true Bionic Boy as it will be a third device implanted in his body (VP shunt, cochlear implant, and VNS).  We must also remember that Owen typically has only 1 seizure per week, less in the summer when there are no viruses around.  If we had a 50% reduction in seizures it would mean going half a month in the winter and two months in the summer seizure free.  And if the pulse initiated by the wand stopped the seizure without Diastat and before the respiratory effects set in, then the impact of the seizures would be considerably less (Diastat makes him sleep much longer than seizures that resolve without it, and it really sucks to stop breathing).  

We also consulted Owen's neurosurgeon who we have come to trust over the years and who would be implanting with the device.  He agrees that this is the next logical step as well. 

So with everyone on board, we are going to call on Monday to schedule the procedure.  If it doesn't work for him, if he is one of those people for whom the VNS does nothing, then the diet will still be out there to try. 

And just because it's no fun to close without a picture, here is a picture I took last weekend of Owen and his sister playing with an old rake:


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