The Amazing Owen
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Finally!!
So yes, by finally I do mean that I'm finally getting around to posting here after a year, but I mean oh so much more than that.  2013 was a wondrous year full of the word finally.

We finally made it a full calendar year without a surgery or hospitalization.

We finally made it a full calender year without a seizure.  

We finally felt comfortable enough to let Owen fly on a plane again:

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so that we could take a REAL family vacation that was actually a few miles away from a hospital:

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Owen had an absolute ball on this trip.  One thing he loved, was when Grandpa would run down the walkways with him:

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And as you can see in the video below (one large size, one small size), he was just giggly happy most of the time. Owen loves to travel and it's great that he can finally do it again:
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We spent some time in the sun:

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And we finally had non-emergent checkups at Duke that were laid back enough for us to finally get to visit Duke Chapel, which we have been wanting to since Owen was born:

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Owen finally overcame his fear of grass - enough to even sit in the grass and leaves and enjoy a snack!

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Owen was finally healthy enough to return to school:

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which he absolutely LOVES!  It has been so good for him.  He uses his walker every day and goes farther and farther.  His class loves him and he has awesome teachers.  

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We celebrated his 7th birthday this year!  That doesn't seem possible, but believe it or not Owen is now 7 years old.  We celebrated with some yummy and vibrant Red Velvet cake:

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And here's Owen looking all grown up and sitting in the grass with his best friend for a fall picture:

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He dressed up as a ninja for Halloween and even got to participate in the festivities at gymnastics.  

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And finally Owen just celebrated his 7th Christmas.  

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2013 was an incredible year for Owen and we could not be more thankful for all the progress he has made this year!
 
Jigsaw is Ours!!! (Oh, and Appts too)
So today was a huge day for our family.  In June of 2010 we started the application process for a service dog, without any real idea of where we would end up with that idea.  In March of 2011 we got the call that Owen had been partnered with the beautiful Jigsaw. I, Owen, Sammy and Grandma Q had all met her in either training classes or interviews but Daddy still had not.  Leil, Jigsaw's amazing trainer, was kind enough to send us our very first picture of Jigsaw to introduce her to Daddy:

How could you not fall in love with that face?

It has been a long road since then with lots of hours of training - but it has been tremendous fun too. I have never met a dog that loves to play as much as this one, and who loves to work as well.

This long road has led us to today, when we passed our final tests and were finally awarded our ownership papers!  Jigsaw is now legally ours and we couldn't be more thrilled.  Sammy knew that we were testing today and when we pulled in the driveway she ran outside to find out if we had passed. I knew that we would - Jigsaw really knows her stuff and I knew she wouldn't let us down. She has been a family member since she moved in in March, but it is great to have it official.

From helping Owen to sleep off his seizures:

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To warning us of his seizures and helping him through EEG hookups:

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She has been a wonder in how much comfort she has brought to Owen. 

But she has also been a great source of joy in just playing too:

And looking beautiful whatever the setting:

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Or just being a warm furry friend:

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We couldn't be happier that she is now officially, ours forever!  And of course, there must be HUGE thanks to the entire team at Saint Francis Service Dogs for their help and generosity!!!

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As much as I'd love to leave it there with Jigsaw, I have to do some medical stuff too while I'm in here as there are some things that need updating in that area. 

On Wednesday we went back down to Duke for a series of checkups.  Owen had his first seizure in three and a half months on Monday. Boo!! But it was good timing anyway as we were headed to the neurologist in two days anyway...much better than if it was two days after seeing the neurologist.  Owen has gained a whopping four and a half pounds since we last increased his meds, so we thought that perhaps he needed an increase in his Depakote dosage. They checked his levels while we were there and sure enough they had dropped off, so we have increased his dose in hopes that it was just a breakthrough seizure because of his weight.  They also fiddled with his VNS a bit more to increase the frequency of the pulses to see if that might help.

I also asked about his EEG results.  Those of you on Facebook will know that I was driving myself straight up a tree with looking at the scribbles and waves on his EEG while we waited (rather impatiently) for the neurology team to give us official results.  I saw things like this from a known seizure in 2010 where we watched him have a full clinical seizure in front of our eyes:

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and I was comparing it to things that I randomly found in our readings in November that looked like this:

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and wondering why that wasn't a seizure as well. So I asked Dr. Gallentine to explain it to me, and he did. He said that the big ugly dark lines actually had nothing to do with seizure activity, even when it looks like this:

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those are all just muscle movement.  Even an eye blink can cause squiggles.  No, he said that the real seizure stuff is slow and rythmic. So if you look at the known seizure one again:

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it's the highlighted stuff below in thick red lines (the thin ones are the EKG lines, I should have chosen blue or something to contrast I suppose) that are the actual seizure activity:

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And there is clearly nothing like that one the scary looking ones from this year.  And now I know what to look for in future when I spend hours scouring EEG results :-)

And finally we met with neurosurgery.  Owen has never had very good balance but it seems to have gone downhill ever further in recent months. We have also noticed that he has started choking more and more on thin liquids.  Balance problems and choking are a sign of a possible worsening of his Chiari and we'll be getting a thin slice 3D CT scan in early February to take a peek in there to see if anything has changed. These symptoms could also be a sign that he needs to stop chugging his drinks so fast and the seizure meds are messing with his coordination more than we thought. I don't know whether to hope that the Chiari is worse so that there is hope that his walking will improve, or hope that it has not because it is major surgery to get that improvement.

But otherwise Owen has been the happiest he has been in ages.  He is babbling again and he is into absolutely everything, which is as it should be.  We just have to remember to keep the toilet lid closed again.  He may not able to walk, but he is an expert crawler and climber.

"Look, I'm tall enough to see over the counter...I wonder if there is anything up there?"

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"Hmmm, nope.  But wait?  What did Daddy just put up there?"

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"Ah, yummy success!!!"

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And then there is Owen's Christmas present.  I thought the relatives might enjoy seeing what I did with the Christmas money that they sent.  The makeover that I did in Owen's room for his birthday has been a wild success.  He stands up at the handrails almost every day and plays with his toys.  This is excellent, but it requires him (and therefore me) to be upstairs for a large portion of the day to get in really good standing time.  I thought it would be a good idea to give him an area on the main floor where he could get upright as well. As soon as we cleared out the Christmas tree I did this to that corner:

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I'm not sure what we will do with the Christmas tree next year, but that problem is 12 months away and for now Owen is enjoying his new play area.  I'll close with Owen catching Mommy in the mirror and giving me a big ole grin:

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Owen's New Room

Well, it's finally done, Owen's new room is finished!  But it's not just any room makeover - it's a makeover with a functional purpose(which is a good thing, because I have little to no home decorating skills!)

For the last few years we have worked hard to make as much as possible accessible to Owen through crawling, since that was what he was capable of.  We wanted to make it possible for him to explore his world and to be able to make choices about what he played with next.  We didn't want to frustrate him by having everything he desired out of his reach. We did an excellent job with this idea I must say - too good of a job really.  You see we humans need a bit of adversity to move us along.  When we get too comfortable we stop making progress and our world stagnates.  It was time to take Owen a bit out of his comfort zone to start making a bit more progress toward walking.  In this spirit I revamped Owen's room so that everything he would like to play with required him to stand up, but also gave him the tools to do so given his balance issues.  So, without further ado, here is Owen's new room:

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I have installed hand rails along the walls to allow him to pull up and to help stabilize him so that he can walk from one toy to another without crawling. I took his favorite toys and mounted them on the walls so that he can play with them while standing up.  I also got a shiny new acrylic mirror for him to look at, because he likes mirrors.  I removed most of his other toys from the room so that he wouldn't be tempted to just sit and play with those.  I bought one of those standard activity tables - the type that is meant to be used for a train set - and extended the legs so that he has to stand up to play with anything on it.  The table is placed just far enough away from the hand rails that he has room to move along the rails, but can also transition from the rails to the table without sitting down:

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You can almost see on this wall:

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that the fabric border above and below the toys, which turned out to be a nightmare to get even remotely straight because I had to cut out those rows of squares from a large quilt pattern and then piece them back together on the wall, is also functional.  The squares have different raised surfaces, including some furry ones, to invite him in tactilely.  The blue background is a fleece material that I put up ages ago for Sammy.  I used to have sea animals that I had sewn for her velcroed to the wall, now Owen loves to run his hands over the fleece.

Here is an overview of the other wall, with a toy that can be reversed on the left, the cool new mirror, a set of jingle bells that Sammy made, and one of his favorite toys that his friend Mya gave him a long time ago but that he still plays with constantly.  The painting of the elephants (which is actually a little coat rack, but it's hard to see the pegs) was a present from Grandma Q.

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This project has been weeks in the making.  Here is a shot of Sammy doing some of the artwork on the table:

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I bought the table unfinished so that I could attach the leg extensions.  I didn't like the idea of a regular table with long legs, I was afraid it would tip if he tried to pull up to stand - this design is very sturdy.  I also bought it undecorated so that Sammy and I could have the fun of decorating it for Owen.  Here is a sampling of our artwork on the table:

Sammy's big lady bug, with embellishments, in the middle of the table surface:

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The bugs around the outside of the table:

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And here is my helper posing with her handiwork:

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She not only helped me with the art, but held things on the wall while I put in the screws and answered the question, "Does that look centered to you?" a whole lot :-) Oh, and Grandpa Q gets some credit in these pictures too, as the dresser that you see in the first one is the dresser that he built for me when I was a kid.  Sammy used it for years and now it is Owen's.  And finally Daddy gets cred for lifting and moving the heavy things for this project!

Finally we removed Owen's old bed.  In May of 2009 Sammy and I made and decorated a bed for Owen:

We made it with walls that were just high enough to keep him in while he slept, but low enough that if he climbed out he wouldn't hurt himself (this picture was taken before the kids switched rooms, so the alcove in this room is on the opposite side as his current room).  This arrangement worked really well for quite a while, until he finally learned how to climb out earlier this year.  Shortly after he learned to climb out of his bed, he learned to climb on to the queen sized futon that we kept in the room because Mommy and/or Daddy have to sleep in his room so often.  Once he had a taste for the wide expanses of the futon, there was no going back to the confines of that tiny twin sized bed!  So, rather than fighting to keep him in the old bed, we just took it apart and moved the futon into the alcove.  The queen sized futon completely fills the alcove, which makes for a nice cozy nest.  And as you can see, we did keep a bit of the old bed in the new room:

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The picture above is a piece of Sammy's artwork from the old bed that is now on the side of the alcove above the new bed.  You can also see a painting of some cute giraffes in the background, which are also a gift from Grandma Q - we all like to paint!  Actually, here is a better picture of the giraffes:

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So the next question is, has it helped?  Does he even like it?  Well, here is Owen 30 seconds after I finished mounting the first toy to the wall:

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I wish that there had been a way to get the whole thing done while he was sleeping elsewhere so that I could spring it on him all at once, but alas that was impractical and so he got to play with each bit as I put it up.  Here are a few more views of him enjoying his new playground:

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We have already seen huge progress in his motivation to be fully upright.  We keep finding him standing up in all kinds of places.  I wish that I had had the camera at the ready more often in the past weeks to catch him at the dining room table, the end tables, the bathroom sink, the writing desk in the living room, and more.  Here is what I did manage to catch though:  Here's Owen checking out what Mommy is making for dinner:

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And trying to climb the stairs the hard way:

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So yes, it has helped already.  And he seems to love it.  In fact even as I type, at 9:12 pm when he should be sleeping he is in fact standing up and playing with his toys in the dark. 

The table has been in for one week now, and the railings for just over two weeks.  This little video shows just how much progress he has made in his cruising in this short amount of time:


He has really taken to the idea with no problem at all.  I'm not going to mention the "s" word in this post, but lets just say that their recent absence has also been extremely helpful in this endeavour. 

So it might not make Martha Stewart happy, and my husband may be right in believing that it somewhat resembles a ballerina studio, but I think that on the whole it will be incredibly useful.  And what's more, Owen likes it.  So happy birthday a few weeks early little man, enjoy!

Oh, and since I haven't brought out many pictures of Jigsaw to make you go Awwwww lately, I'll close with these:

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Owen and Jigsaw Become Celebraties

In my last post I gave a link for an article that was done in a local newspaper, the Salem Times-Register which was a very nice article giving an overview of our life with Jigsaw.  A local TV station saw the article and decided that it would be nice to do a news story on us as well.  They came out and filmed today at our house and aired the story tonight.  You can see the whole story as it aired here on the WDBJ7 website.

Many thanks to Meg Hibbert from the Salem Times Register and to David Kaplan at WDBJ7 for taking the time to get to know our family and to spread the word about these amazing dogs and the difference that they can make in our lives.

And of course, we send out many thanks to the incredible people at Saint Francis.  You can view their website to get more information or to make a donation here.

 
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.

School
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.


Seizures
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:

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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:

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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:

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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!

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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:

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Jigsaw

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Good Times...
So it has been a while again.  I have all kinds of stuff to put up about Owen's progress. The seizures continue about the same as in the last post.  We are still trying to make the final decision on school next year.  But for this post I just want to put up some great pictures of the fun that we have had this summer with Owen's other special friends.

You have seen Owen's friend Mya in previous posts.  She doesn't have hydrocephalus, but she is special in her own way.  Owen and Mya definitely enjoy each other and this summer they have teamed up for music therapy lessons with Ms. Julie.  I thought I'd share some highlights from those sessions. 

Firstly, Mya got to meet Jigsaw and I think they both enjoyed that very much:

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Music therapy is fun for everyone, Sammy and I enjoy it as well.  Here is some of the action from our sessions:

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And Jigsaw learning to "bump" the tamborine to play with us:

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And how cute is this?  Both Mya and Owen love to touch, and so they are caught holding hands, not once, but twice:

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That second picture is from an outing at the mall. Owen goes there for practice in his walker (video on another day) and Mya joined us in her tricycle. 

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And you can also see Owen showing off his new stroller.  He finally has the strength to sit up in a regular stroller, which has been a blessing to Mommy's back.  It's a Britax Blink and it goes up to 55 pounds.  I'm loving it!

Tomorrow is our last music therapy session for the summer. It has been so much fun that I'm going to be sad to see it over.

And yesterday we had another treat.  If you remember a while ago Owen got to meet Avery (blog here ) and her Mom.  Yesterday we got to meet the rest of Avery's family for a day of fun in the sun.  We had some fun in the pool:

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Owen REALLY liked the rainbow beach blanket they brought with them:

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And Oliver was just sooooooooooooooo cute:

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Avery got to meet Jigsaw:

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And Sammy and Brogan roasting marshmallows:

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And Sammy and Avery played the "cloud game":

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And some nice shots showing everyone having fun in the pool:

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So, we'll get back to the medical stuff later, today was just about the summertime fun!
 
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.

Seizures
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. 

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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.

Eating
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. 

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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:

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An Ode To Jigsaw

An Ode To Jigsaw
By Mommy

It was hard to hear the doctor say
I'm sorry the seizures are here to stay.

We had to watch him day and night
Never did he leave our sight
Restful sleep, a thing of the past
Mommy and Daddy were fading fast.

At a loss for what to do
We searched the web to find a clue.
The answer posted on a blog:
What you need is a special dog.

This answer seemed to feel just right,
So we filled out the form on the site.
It wasn't very long at all
Before St. Francis gave us the call.

What to expect we weren't quite sure,
But the thought of sound sleep was a powerful lure.
A bark to tell us when a seizure began
Was all that we needed and that was the plan.

Our simple plan just grew and grew
As Jigsaw showed what she could do.
Retrieving meds when he started to seize
This and more she did with ease.

What we never thought of at the start
Was just how much she could touch the heart.
Kisses for Owen when he's had a bad day,
Telling Sammy she's always ready to play.

Walking the dog may not seem like much fun
But now every day I get to play in the sun.
And Daddy I think would freely concur
That there's nothing better than a friend with fur.

So thank you Jigsaw for all that you do
For we have been Blessed by the presence of you.

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Jigsaw and Bob
Just a quick note from this weekend.  We have been working hard on the relationship with our 12 year old mostly Malamute and Jigsaw.  The old boy definitely felt that he needed to be the "alpha male" when we got the two together.  But we have spent time taking them both on walks both outside of the enclosure that has been Bob's domain forever and inside it while they were on leash so that they would get used to each other.  There have been a lot of noses put in embarrassing places - as dogs will do - and some gradual readjusting of attitudes until we now have two dogs that like to play together.  They are still closely supervised of course, but here is a little video of the two of them today playing fetch in the front yard.  Well, Jigsaw is retrieving the toys and bringing them back to Sammy and Bob is catching them and taking them off to his house to tear apart, but they are happily playing in the yard together.


It probably hasn't hurt that I've had a pocket full of treats whenever I visit Bob these days too.  I'm sure that in his mind Jigsaw's arrival meant that Mommy now has treats.  Hey, whatever works!

Here are our two pups, totally tuckered out after a good romp in the front yard.  Jigsaw has some leaves in her fur, but I promise that she got a nice grooming later on. 

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Bob's tongue is about two miles long and really looks goofy hanging off to the side. We had to make them sit down to rest - I think they would have gone at it all day if we hadn't put the toys away and made them lay down. They sure did have fun though!

 
Jigsaw's First Seizure Experience

Yesterday's training session started out fine, we were practicing a meet and greet at the door.  Jigsaw and I were working in the kitchen with Leil coming in the door when we heard "he's having a seizure" from the living room.  I had just finished crocheting the medicine bag that we were going to teach Jigsaw to retrieve that day, but it hadn't been hung yet and she hadn't yet learned how to find it.  But she still proved that she's a big help anyway. 

During a seizure there are a lot of things to do in a short amount of time.  We have to keep him upright and make sure that he doesn't aspirate as his seizures almost always begins with vomiting. You have to get the magnet swiped as quickly as possible.  After that you have to get out the pulse-ox and the oxygen tank. And during all of this Owen is awake and reaching out to you and you are trying to comfort him.  During this seizure Jigsaw sat next to him and he reached out to her and pet her while we did the work.  She stayed right by him, both during the seizure and while he was sleeping it off:

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While Owen was sleeping - about two hours this time - we taught Jigsaw how to fetch this bag:

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It is a crocheted bag that is attached to the wall with Velcro.  Inside it are a magnet, Diastat and a small pulse-ox.  In short, everything you need if you are alone with Owen during a seizure to get him through the first few minutes.  By the time he needs the oxygen he is done vomiting and the danger of aspiration has passed so that you can go get the oxygen tank. 

Here is Jigsaw getting that bag off the wall.  We are sitting having a normal conversation.  With no preamble or warning I ask her to "get the bag":

She learned that in about five minutes.  Seriously - she is really amazing. 

 
Jigsaw Goes To School
So I had to take a few days break to do a few things like laundry, paperwork, housecleaning, you know - the really basic stuff.  But it's time to get back at the blogging thing to show how things have been going.

On Tuesday (yesterday I guess that would be) Jigsaw came to school with us for the first time.  Since Owen spends such a large portion of his life in school, it was important that we try this very early in the process to be sure that we would all be able to cope in that environment.  Preschools are not known for their peace and quiet and even though Jigsaw had been exposed to malls and restaurants and every kind of store imaginable in her training, schools are not public places and therefore she had not been in one. 

So yesterday we loaded her into the car and headed off to school.  Elizabeth is fond of taking pictures of my backside :-) and you can see the toys I brought hanging out of my back pocket:

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The toy (which looks just like Wubzy and therefore Owen LOVES) is to get Jigsaw's attention if she becomes too distracted by other things and I need a quick way to get her focus back on me.  But, as you can see, she's doing just fine.  I'll admit I was pretty nervous myself.

We spent a little while in the classroom, going through our normal routine:

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Jigsaw hung out under the table being a warm and fuzzy presence while we did our work.  Next up was OT.  Jigsaw helped Ms. Angel to show Owen how to put things in a basket:

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Owen generally doesn't much care for OT.  He has worked better for Ms. Angel than he has for any other OT in the past two years (we're still missing Vesna who he loved), but he would still really prefer if no one ever made him put anything "in" anything else.  And he tends to express his opinion rather clearly during these sessions.  Yesterday though he would try a bit of work and then reach out and pet Jigsaw and then go back to the work without ever really fussing. 

After school we headed home for some more work.  Leil and Elizabeth decided it was time for some heavy duty testing.  They had tennis balls, treats, toys of all kinds.  They had me walk Jigsaw through the room while throwing the balls, tempting her with treats and anything else they could think of.  To understand the full scope of this you have to understand that to Jigsaw tennis balls are the be all, end all of the Universe.  Even holding out treats didn't get her to turn her head.  So you have to get really creative to get her attention back on you.  Here is Jigsaw giving her absolutely full attention to Elizabeth who has a tennis ball in her hand:

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In the end I simply had to take her out of the room to get her attention back on me, but hey - whatever works.  After that we were able to walk through the gauntlet without stopping.  Outside of the hyponitic influence of the tennis ball I think she was able to realize that it was a setup and got back to work in earnest.

But it's not all work.  You can't hang out with Owen without getting in some serious snuggle time:

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Today we returned to the school for another day of fun.  First up was hearing therapy with Ms. Stacey:

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I'm not sure what everyone is looking at there, but it seems to have everyone's attention!

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After hearing therapy we went back to the classroom for a little while and then it was off to Art class!  Today they brought out the paint to make handprints and Jigsaw got in on the fun:

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And here are Jigsaw's paw prints on the left and Owen's hand prints on the right:

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They were mixing yellow and blue to make green. 

After art class we left and went to the Tokyo Express - a little Japanese restaurant for a little outing.  Jigsaw did wonderfully, of course, and so did Owen.  We have been working on getting Owen to have better manners in public spaces - loudly yelling "ya, ya, ya, ya" and banging on your tray is not exactly conducive to the digestion of the people around us.  I think all of my work in this area is finally paying off because he did fine today, other than throwing his cup a few times.  And Jigsaw just sat quietly under the table.  The people at the restaurant were really great, holding the door for us and Jigsaw, putting us in a booth with lots of room for Owen's chair and the dog, and just generally pleasant.  We'll be going back there again!

Oh, and Jigsaw is now here to stay.  She was supposed to head back home with Leil yesterday and return tomorrow.  We all talked about it yesterday and decided that it wouldn't be the best choice at this point. Owen and Jigsaw are really bonding well and a break at this point might make it harder to start again in a few days.  So it was decided that she can stay.  I felt bad that Leil didn't get her two nights with her girl, but I supported the idea that it isn't easy for Owen to start and stop a routine and it would be best to just keep them together since it is going so well.  So here they are right now:

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Yup, More Jigsaw
If you're getting tired of Jigsaw pictures, this entry is not for you.  It's kinda what's happening here at the Higgins' household at the moment and so I've gotten out the camera again!

But first though, I want to share a few pictures taken by Elizabeth (one of the trainers working with us) yesterday.  She got some excellent pictures of Owen and Jigsaw together with one of his toys. This toy is covered with buttons, each of which does something different.  Owen loves the buzzers.  The cool thing is that you can ask Jigsaw to "bump" things by pointing at them.  So we had her bump the buttons while Owen was pushing them.  It was really cute:

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And here is Owen playing with Jigsaw's vest:

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And finally, I have a goofy expression on my face, but I absolutely LOVE the expression on Jigsaw's face - this is how she looks when she's very alert and just waiting for the next thing she can try:

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So, now we're up to today - Jigsaw's second day with us.   Here are Owen and Jigsaw hanging out in the living room:

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And Owen learning how to dump the food into the bowl.  Pouring is not an OT task that Owen has, so I'm hoping that this will help him learn - and if Owen helps to feed Jigsaw it will stregthen their bond.  Eventually Sammy will help get Owen to do this task, but tonight she was busy making us pancakes for a "breakfast dinner" so I helped Owen tonight.  She did take a quick break from her cooking to take this nice picture though:

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Mostly Owen wanted to eat the food, but I'm hoping repetition will help him to understand what we're doing.  And Jigsaw is waiting patiently.  Normally you'd probably make her "sit" while she waits for the food, but the poor girl can't sit on our kitchen floor.  She tries awfully hard, but it's slippery and if it's more than a few seconds her back end just slides right out from under her.  So we go for a "down" instead.

After she ate her dinner she decided to help Sammy and I make our dinner by keeping the kitchen floor warm:

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When the flash went off she looked up as if to say, "Yes, can I help you?".

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While cute, this was not the most ergonomic setup so I threw down a towel to give her a "place" while we cooked so that she could stay nearby, but not block the fridge:

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It's rather useful that you can just put down a towel or blanket or whatever and point to it and say "place" and she'll just settle down there.

And finally we got the kids into their PJ's and Owen said goodnight to Jigsaw: 

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Jigsaw the House Guest
Well, today was the day.  We have finally progressed far enough in our training to let Jigsaw spend a few days here at the house!  A proposition large enough to make one both excited and nervous.  It really does feel like bringing home a baby in a lot of ways.  I went out and bought a bed, toys, food and made her place ready for her next to Owen's bed.  Thoughts of "it's going to be great" mix with "I'm responsible for this living being"!  Yup, very much like bringing home a new baby.

The kids (Jigsaw included) are in bed now and all is quiet.  We actually had a really fun night. 

Right after the trainers left, I made dinner.  Jigsaw hung out in the kitchen while I got it together.  During dinner Jigsaw hung out "under" the table:

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She had a snooze while we ate and when we were finished we took a little trip outside for the necessaries.  After dinner I decided that I should show Sammy and Daddy the "help" command, because it might be incredibly useful if Owen should have a seizure while Jigsaw is with us.  The help command should work like this: you say "help", and then she should start barking and head off to find someone.  When that someone says "what" she should lead them back to you.  You can see where this would be incredibly helpful.  So Owen and I went up into Owen's room and Daddy and Sammy stayed downstairs in the living room.  As soon as I said "help" she barked and headed off.  She went into Sammy's room and didn't find anyone and saw me and looked for what to do.  I said help again and she barked and headed downstairs and found Daddy and brought him back to me. 

Then we chilled out for a while and I took this picture:

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up in Owen's room.  After some chilling out she seemed like she wanted to play, so we showed Daddy the "find the duck game".  One of us would hide a stuffed duck somewhere upstairs (it's only three small rooms) and she would happily go off and find it.  I had her fetch some diapers (gave Owen an enema, ran out of diapers in my pile and she was happy to bring me more) and she got some good quality lovin' on.  Then she settled down for a while so that I could get Owen's meds ready and get him ready for bed. 

When I went to bring all of Owen's stuff upstairs I heard a little voice inside my head, which sounded remarkably like Leil's, saying "why are you going to make two trips up when Jigsaw can help you?".  Leil and I had worked with a bucket last week at the farm, and again with one of our buckets here on Tuesday.  We hadn't tried this exact thing, but since we had worked with this exact bucket I decided to listen to the voice.  I put owen's meds into the bucket and told her to "get it".  And she happily carried it right up the stairs.  Daddy got a picture of us:

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And here she is proudly holding her bucket for me:

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Oh, and since we had pictures of Leil up the other day, I thought it was time to have one of Elizabeth (these are the two trainers from St. Francis that have been training us, just in case you haven't been reading).   So here are Owen and Elizabeth playing the piano this afternoon:

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It was a good evening and we're looking forward to the days to come!

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Jigsaw at Home
OK, so I don't have any pictures from today.  Leil took some and hopefully when she gets a chance she'll be kind enough to share them with me so that I can share them with you.

Today Jigsaw came out to our house for the first time to see the home that she will be living in.  We mostly went through all the same exercises that we had before, but it's different every time you're in a new place.  She also got to meet Chris for the first time today. We knew that he'd love her, after all she has four legs and fur and that's pretty much the only qualification you need to meet in his book.  She seemed to make herself right at home, was happy to eat and drink here and had no trouble snoozing right there with us all.  Owen was happy to have his hands licked again, and again laid down next to her.  Owen missed most of the training today because he was exhausted and we had to put him out for a nap.  (Owen's meds really keep him awake, so it's an extra Clonidine at lunch to make him nap every few weeks when he just gets overtired because overtired = more seizures). We all went on a long walk so that Jigsaw could survey the whole of her new domain.

Jigsaw also got to meet Bob (our mostly Malamute mutt) for the first time.  He tried to go all Alpha Male on her, which earned him being tied up for a while.  We've had other smaller female dogs come to stay with us for a few days in the past and he always settled down after the initial newness wore off - we are hopeful that he will again.  If not, he's going to have to get used to being tied up while Jigsaw is out to play.  Bob is going to need a refresher in his training too to remember his better manners.

The meeting with Cloud (the cat) went better - they acknowledged each other's existence and then went their separate ways without incident.

Sammy got to sit down and brush Jigsaw's hair today - which I think they both enjoyed very much.

We worked a lot today on just getting Jigsaw used to the house, and on the logistics of handling her and Owen at the same time. We had a few rocky moments here and there, but by the end of the day I think both of us were feeling more confident.  I get nervous when others are watching what I'm doing - I'm just a perfectionist that hates to get anything even slightly wrong.  But Leil and Elizabeth are kind and patient.

The current plan is for Jigsaw to come to our house again on Thursday afternoon and then if all goes well she can stay here from Thursday afternoon to the next Tuesday when our next training session is scheduled.  Then she'll go home with Leil again for a couple of nights for us to have a break and to see if we are missing her terribly when she's gone or breathing a sigh of relief that she's gone (not likely, but always possible).  You see at this stage we still have the option to say "Whoa, this is way more than I thought it was going to be and we can't handle it".  In which case they would find another partner for Jigsaw.  The trainers can also still say that they really don't think it is working out and take her back as well.  These are rare cases, but everyone wants to be sure that the partnership is a positive thing for both the family and the dog.

If we do realize that we are missing her terribly and she is missing us during that break and if all is going well with the training by next Thursday, then she will move in with us.  We still have a lot of training after that.  We have to work together in school which we are hopeful will begin next week.  We have to pass our Level III test which says that we have mastered working together in the home. Once we have passed the Level III then we start working out in public places like malls and restaurants until we can pass our Level IV test so that she can go with us everywhere.  Then we'll begin a 6 month probation period where we have passed all of our tests and she's really ours, but there is still the option of her being pulled out if things aren't working out. After that we will finally say that we have graduated and she will be ours completely.

So, that's where we are now.  I know that I already miss her, even though today was a lot of hard work. 

 
Owen and Jigsaw Together

Today was Owen's first day of training with Jigsaw.  When people think of why were are getting a service dog I'm sure the first thoughts are that she can help retrieve things when my hands are full with Owen, carry things upstairs to cut my trips up the stairs by half, help with doors, and help to let me know if Owen is having a seizure.  These are certainly a big part of the reason, but just as large a portion of what Jigsaw will help Owen with is right here in these two pictures:

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Owen would take away his hand, clap and sign more and then reach right back out to Jigsaw.  Jigsaw was happy to lick his hand and nuzzle him.  While Owen will snuggle anyone who is willing to pick him up, he isn't the most interactive child.  He really ignores the other kids in his class and doesn't try to get their attention.  He will seek out me, his Daddy, his sister or a few other adults.  There is only one other child that he will actively crawl to and that's Mya.  I think that Owen knows that he is different than the other kids in his class, and somehow he knows that Mya is the same as him and feels more comfortable with her.  So even though he is in a classroom full of kids all day, he is also somewhat alone. To see Owen reaching out to Jigsaw today, signing for more and not just noticing her but actively trying to engage her just about brought tears to my eyes.

Yesterday we were working at the St. Francis facility, which is located on a big farm.  Today we were working in their training room at Tanglewood mall.  Service dogs need a lot of training in how to work and have good manners in public places since they are meant to go everywhere with their partners.  A mall is an excellent place to get this training.  And partners need this training too because it can be considerably more difficult to keep the dog's attention where there are a lot of distractions. 

So, first we headed out into the mall for a stroll:

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(Don't you just love the shamrock socks?)

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We also did a good bit of work on negotiating the logistics of getting through the door into a bathroom and then getting the three of us into a stall and then all back out into the hall again, but Elizabeth was kind enough not to take pictures during those proceedings!  :-)

Eventually we got brave enough to actually head outside.  This made me nervous as it is fairly busy on the road around the mall during the day and that leaves a lot more opportunities for distractions and the possibility that if Jigsaw got away from me that she could get hurt a lot more than she could inside.  But Jigsaw knew what she was doing and she's a very smart girl - we had no problems at all!

So here we are at the door, heading out into the big, wide world:

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And finding some grass for Jigsaw to do her thing in:

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And most seriously cool was her hitting the button to open the door:

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After working quite hard we let Jigsaw stretch out on the floor to rest.  I had put Owen down some distance away from her to play with some toys.  He decided all on his own that what he wanted was to play with toys (yes Lisa, that's the phone that you gave Owen three years ago!) and to have Jigsaw too.  So he crawled himself over and here is Jigsaw fast asleep and Owen happily playing:

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Many thanks to Elizabeth for taking so many wonderful pictures while we worked today, and once again to Leil and Elizabeth for their patience, kindness and great advice as Jigsaw and I figured things out. 

I can't wait to see what further adventures Jigsaw and Owen will have together!

 
First Day of Dog Training
After much anticipation, today was our first day of training with Jigsaw.  Today I went alone, we'll add Owen into the mix tomorrow. It was a full day of work in a place where Owen really wouldn't be able to get down and crawl so it would have been too much for him to sit in the stroller for the whole day.  And it was easier to start with the basics without adding in a stroller and 4 year old to work with. 

And yes, there are more pictures at the end of the verbage. 

I think it went quite well.  Jigsaw really knows her stuff and just loves to work so that makes it easier on me. Leil is Jigsaw's trainer, and she is an incredibly patient person as I try to remember the right command words over and over again.  Our pet dog Bob went through some training when he was a puppy and I still tend to fall back on the command words that I remember from his training when I get flustered.  "Heel" is a command that most people know, but it is not specific enough for a service dog - they know "Left" and "Right" so that they can go to the side that is most helpful to their partner.  I used "OK" to release her from a "Sit" or "Wait" a few times instead of "Release" like I should have. 

Today we did: 
Sit
Down
Stand
Wait
Left
Right
Let's Go
Stay
Release
Come (Come from wherever and sit centered in front of me at attention)
Here (Come to our general area, or tells them to bring what they are carrying to you)
Settle (Tells them they can relax in a specific place)
Place (Tells the the place that you want them to be in, in today's case a blanket on the floor)
Get It (You point to an object, or give them an object to carry in their mouth)
Park (Do your business now please)
Load (Get into your crate/car)
Unload (Get out of your crate/car)
No (oops, you got that one wrong, please correct it)
Yes (An affirmative that they did the right thing)
Hold (Hold an object in their mouth and don't let go)
Give (Give the object in your mouth to me)
Drop It (Drop the object in your mouth on the floor)
Leave It (Yes, I know you'd really like that smelly thing on the floor but it's time to work now)
Back (Take a few steps straight back)
Quiet (Please don't whine)

We had to do the recall from a distance (letting them sit and wait at a distance from you and then having her "come" to the proper spot) several times before she ended up right in front of me where she belonged, but we both got there in the end.  We also did a "meet and greet" exercise with a puppy that is just about to start his training.  This requires you to keep your dog under control even with the distraction of an untrained dog in the area.  We also did some of the other commands with the puppy playing in the room.  It is considerably harder to keep her attention when there is another dog to play with and it took a few tries to do some of the things but again we were much improved by the end.  I think Jigsaw and I will need some more practice in this area. 

We played games of throwing and fetching which she just loves to do.  We also went over a lot of paperwork, talked a lot about service dogs in general and discussed the testing that will come eventually.  She showed how she could open a refrigerator door, get out a bag from inside and close the door back up.  She picked up objects off the floor and put them in a clothesbasket.  She then tugged the clothesbasket across the room. We practiced going through doors and the logistics of person/dog/leash all getting through the door without getting tangled and Jigsaw waiting to be the last out the door so that she can't bolt.

And both Jigsaw and Leil were kind enough to let me take their pictures and even kinder to say that I could post them here. 

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Leil and Jigsaw demonstrating to me the position she should end up in from a "Come" command:

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And demonstrating the "Right" command:

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And showing me how patient she could be in a "Sit" and "Wait" while I took her picture:

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It was a long day for all of us, but it was a lot of fun.  We will do a half-day with Owen with me tomorrow and then come back to it next week when we'll hopefully get to start working in our home to start customizing her (and my) training to the things we'll need around the house.
 
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

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Ms. Angel - Occupational Therapy

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Ms. Amy - The Other Preschool Aide

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

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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:

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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:

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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:

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Jigsaw

This is a long bit of verbage, but it's a really good story.  So go get your coffee and come back and settle in...

Last September I wrote about the fact that we had applied for a service dog for Owen in this entry.  I explained the process in detail there, but a quick overview is that we applied last June and Owen was approved as a candidate in July.  Once you are a candidate you attend classes every three months while you wait for an appropriate dog to pass its tests so that they are ready to be paired.  Once a dog is ready to be paired they interview several people with the dog whom they feel might make good partners. When the interviews are done they choose the best fit.  Last week we finally got the call (well email) that we had been hoping for: could we please come and meet with a dog that they thought would be a good match with Owen.  And even better - it was a dog that we had met and really liked in a training class last year.

So last Thursday we went for our interview.  I really had no idea what to expect as it was our first.  The dog's name is Jigsaw and she is a beautiful black lab/golden retriever mix (I think) with long curly black fur.  She is on the smaller end, which is good for a small boy.  As I said, we had met her before and just fell in love with her.  There were a lot of wonderful dogs that we met in classes or at other functions at St. Francis, but after meeting Jigsaw at the last class I turned to my Mom on the way home and said "I know I'm not supposed to have favorites, but I really would like her."  I don't know why she stood out so much from the other dogs, but she was very friendly and at the same time very gentle with Owen.  He loved her soft silky fur.  So we were hopeful when we went into the interview that it would go well.

The first part of the interview is sitting down with the head of the program who goes over a description of how the interview process works - mostly letting you know that they will interview several people with the dog and if you aren't chosen they can't discuss why because of the privacy of the other candidates.  Then the dog's trainer sits down with you and goes over the dog's strengths and weaknesses and discusses your particular needs to see if there is anything that you absolutely need that the dog isn't suited for.  It seemed from the discussion that Jigsaw is a very sensitive dog, which would be good for being able to sense when something is wrong - like a seizure. And she is very hard working and eager to please. Her weakness was that in the past she has startled and was difficult to calm at two very loud sounds.  But the situations that they described were ones in which I'm not sure I wouldn't have been startled so it didn't seem like a show stopper. 

The next thing they do is to bring in the dog herself.  In the beginning they just sat Jigsaw down with Owen to see how they reacted to each other.  He reached out to pet her a few times and she calmly checked him out. And then they actually asked Mommy to work with her.  Looking somewhat like a deer in headlights I'm sure, I took the leash without knowing exactly what to expect.  I shouldn't have worried, Jigsaw made it so easy on me.  You start out with a game where you hold treats out to either side and get the dog to keep her attention fixed on you instead of the treats.  The dogs know this game and it is to introduce you as someone to pay attention to, rather than a background person that they are taught to ignore.  Right from the start Jigsaw just gazed deeply into my eyes and ignored the treats. 

After the introduction, we moved onto the basics like sit, down, and having her walk with me and then with Owen in his stroller.  She was just flawless.  I can't get either of my kids to respond to commands like that!  Then we moved on to more difficult things.  The dogs are taught to play a game just for fun - they are shown a toy and then told to wait while you hide it somewhere out of their sight.  Then you come back and tell them to find it and off they go to root around until they get it and bring it back to you.  Then the trainer put objects out on the floor and I could tell Jigsaw to "get it" and then point at an object and she'd bring it right back to me.  Honestly, it was like a game to both of us and it was just plain fun.

The real moment of seeing just how seriously these dogs take their jobs came next though.  They said that they were all going to leave the room and that I should have Jigsaw sit and play with Owen.  Once her attention was on Owen and she was relaxed and not waiting for a command I should tell her "Jigsaw, Help".  So they all left and Jigsaw came over to play with Owen, and then I gave the command.  She shot off like a rocket down the hall barking loudly until she found the trainer who was waiting down the hall.  She brought the trainer right back to me and Owen.  I mean, Wow. 

The final great moment was after the interview was more or less done and we were just chatting for a minute at the end.  Jigsaw had been sat down next to Owen's stroller and she started to nuzzle him.  He thought this was great and actually signed "more" for her to do it again. Owen isn't always the most interactive and to see him actually communicating with the dog was great. 

Then we left and began the wait to hear if Owen would be chosen, or if someone else would be paired with Jigsaw.  You try to put it out of your mind.  You don't really chit chat about it much and just get busy with other things.  You try not to have visions of having another pair of hands so that if you drop something you don't have to put Owen back down, get the thing and then lift him back up.  Of having help with doors, of knowing that if he has a seizure at school and I'm by myself with him in the therapy room that someone could go and get help.  That someone would be sleeping with him at night that could tell us if something is wrong.

And then yesterday I put Owen into his stroller at school to head out to the playground and I checked my phone, and there was a text from Daddy - St. Francis had called and said that Owen had indeed been chosen.  So I bounced out onto the playground to share the good news. 

We don't just bring Jigsaw home tomorrow of course.  Jigsaw has spent the last few years in training, learning all of the skills she'll need to be a service dog.  Now it's our turn to do our training to learn how to work with her.  This part of the training we'll do together, learning what each of us needs and how to help each other out.  We will having formal training at the training center.  We will have tests to pass.  There will be just weekends at home with us after we've had some training.  Then longer periods at home with us.  The last step is to be allowed to work in public places.  Even after all the training and tests there is a probationary period to make sure things are really working out.  And even after Owen and Jigsaw graduate then there will be recertifications later on.  I'm sure that there will be days when this seems like a lot of work, when having yet another living thing to take care of will be a hassle - but I'm also sure that the help that Jigsaw can give, both by working and by being a soft, furry, loving presence will be worth it. 

I posted a whole bunch of videos of Owen, and his sister Sammy, doing amazing things over on the Family Blog a few days ago.  Normally I repost all of that sort of thing here, but this is already a really long entry so I will just point you over there to check it out. I will do an entry soon about all the incredible progress that Owen has been making lately, but for today we just wanted to share the great news. 

 
Ears, Dogs, Meds & School
As you can probably tell from the title, I have a few subjects to update about :-)  Brace yourselves - I have a keyboard and I'm not afraid to use it! But there has been a lot of exciting stuff happening lately and I want to do each bit justice.

EARS - TWO YEARS WITH THE IMPLANT
The first is that two days ago was the second anniversary of the day Owen's cochlear implant was turned on.  Last year I did a really nice video for the "One Year of Sound".  I have not had enough time this year to make a video - but I did think that maybe I should spend a few words on the progress with the hearing.  Owen's receptive skills continue to be very good.  He can follow a very large number of simple commands like "stop that", "arms up" (for putting the tray up and down on the stroller or booster seat), "look at me", "take <whatever object>", "turn the page" and quite a few more. Really, he seems to understand the vast majority of what you are saying to him.  He seems to recognize which song you are singing to him and will put the correct signs (or as many signs as he's willing to do) with them. 

His expressive skills are somewhat further behind, but they do seem to be coming along.  He now uses the words "mama", "dada", "more", "hi" and "up" at the correct times and in a reproducible manner.  It may not seem like much, but if you had told me when we started the implant process that two years later he'd have 5 words I'd have been jumping up and down for joy.  And the good news is that all of these words have really come since he started speech with Ms. Jessie. Having consistent speech therapy twice a week since the end of last year has really made a difference, and so we are looking forward to more words coming in the near future.

I'm going to get a little ahead of myself by mentioning a dog here - I'll get to those details in a minute - to describe another leap Owen has made with his hearing.  Discerning spoken words in a room with background noise is not always easy for people with hearing aides or cochlear implants.   As such I think it makes Owen often seem anti-social because he doesn't always pick up on the fact that you are talking to him when there is a lot of other noise.  Tonight a woman came up to him in a room with moderate background noise and said "hi", and Owen looked right at her and said "hi" back.  There was another moment when a dog was being praised verbally with a "good boy" and Owen immediately clapped - just like we clap for him and say good boy in therapy.  To notice that someone was working with a dog in the room (Owen tends not to pay attention to what is happening elsewhere in a room) showing a very good social awareness and to be able to pick up the words "good boy" in a room full of people is a huge leap in his ability to listen.

Finally we'll cover the signing.  Owen signs rather better than he speaks at this point, but probably only because he's been doing it longer.  I'm sure I'll miss something here, but a quick list of signs that he has now would be:

Pear (his favorite food - will often use for fruit in general)
Cookie (his other favorite food - will often use for anything sweet)
Bar (for granola bar)
Want
More
Eat
Drink (uses milk for all drinks)
All Done
Up
Waves Hi and Bye
Fan (he really likes ceiling fans and has a sign to ask to turn it on)
Sleep
Yes (usually claps, but will sometimes use the sign)
No (nods head or signs no)

He will also put the signs together to make sentences.  Yesterday he made up his first real spontaneous sentence.  We have shown him "want more pear" and then waited for all three signs to give him the pears and he will evenutally mimic it and do it.  Yesterday though we were in the rather loud cafeteria and I just signed "want what?" in an offhand way to ask what he wanted next for food.  He very carefully signed "eat more pears".  I don't think I've ever shown him that combination, and I didn't prompt him with the signs first - he just answered on his own.  That's another big leap.  As with verbal words, Owen understands a great deal more signs than he uses himself.


SERVICE DOG
I haven't blogged about this because I wanted to get far enough along in the process that it was likely to be a reality before I got my hopes up enough to actually write it down.  We have an incredible local organization - Saint Francis Service Dogs that trains service dogs to help people with many different disabilities and health conditions.  A while back I had read somewhere that dogs can be trained to alert when a child is having a seizure - and that some dogs after, spending a fair amount of time with the child, can even learn to anticipate a seizure. 

I began to investigate this as a possibility for warning us if Owen has a seizure at night while we are sleeping or while we've stepped out of the room.  I found that this is actually not an uncommon thing for a service dog to be trained for.  Owen's PT actually knows a child with a St. Francis dog that can tell when the boy is about to have a seizure and alerts him to lay down so that he doesn't fall.  The idea of having a dog that could sleep with Owen and wake us if he has a seizure was just something we couldn't pass up.  I also liked the idea of a companion that could be there with him through scary procedures, and they can also help balance children learning to walk. 

So, back in late May or Early June we filed an application for a service dog for Owen.  It was a 29 page application and it felt like we were trying to adopt a child.  Of course it was probably 29 pages partly because I'm a bit wordy in my writing :-)  They need to know a lot of history and really dig into the lifestyle and medical issues so that they can know whether or not you would be a good candidate - and if you are which dog might suit you best.  Part of the application process is a home visit to make certain that you have a suitable environment - including a fenced in yard - for a dog. We had our home visit in June.

After you have applied and had your home visit your name and information is brought before the screening committee to determine if they feel that you would be a good candidate for a dog.  The screening committee then passes your name with or without a recommendation to the board of directors that makes the final decision on whether or not you will be accepted as a candidate.  At the end of July we received the good news that Owen had been accepted as a candidate. 

Before I describe the rest of the process I should state that a large part of the reason that the process is so lengthy and complicated is that Saint Francis is a non-profit organization and they provide the dogs free of charge - well, there is a $200 fee for the equipment that you receive like the crate, leash, vest, etc - but it is essentially free.  They have a limited number of dogs due to the volunteer nature of their organization and a huge number of applicants.  There are many places that will guarantee you a dog in a certain amount of time, but you have to pay the $14,000 - $20,000 that it costs to train the dog out of your own pocket, which is not an option for us.  Saint Francis takes their job of training their dogs and placing them with compatible partners very seriously and most of the process is to guarantee that the partnership will work for both the person and the dog -and to place limited resources where they can help the most.

So, tonight was our orientation and first training class.  While a service dog comes to you well trained, you have to have a fair amount of training as well to be able to work effectively with the dog.  You must learn all of the commands, you must learn your individual dog and you have to keep up the dog's training because just like children they will stray off of their good manners and hard work if you don't keep up your efforts.  So they explained the rest of the process in detail to us and even let us meet some of the dogs they have in training. 

At this point we will continue our training classes one night every other month.  In the meantime we are "eligible to be matched".  This means that if a trainer feels that they have a dog that would pair well with Owen we will be called in for an interview.  Each dog that is ready to be paired is interviewed with three or four people.  During the interview you meet the dog and the dog meets you.  You discuss the dog's strengths and weaknesses and compare them to your needs.  After the interviews are done, they decide which candidate best matches the dog.  If you aren't the one chosen then you go back into the pool. If you are then you begin the intensive training with the individual dog over the course of a few weeks.  Even after you finish your training and the dog comes home there is a probationary period to make sure that the pairing is compatibile. 

This is a long process, but I definitely think it will be worth it.  Tonight we met several of their trainers and they had all kinds of suggestions for other things that the dog could help with - such as retrieving meds or the pulse ox during a seizure, opening doors when I have him in the stroller and such.  Oh, and now you know why we were in a room with a dog that was being praised tonight :-)


MEDS
When I last wrote we had just been to the neurologist at Duke and we were all excited.  Well, it hasn't been quite as smooth as we had hoped.  When we got back the blood levels it turned out that his levels were low on the Trileptal and the Lamictal, even though he's on a pretty big dose of Trileptal.  The Zonegran was at least in therapeutic range, but the others were not.  Owen must just be one of those kids that metabolizes everything really quickly.  I called the doc the morning before we got the levels to let him know that Owen's outbursts of anger had gotten so bad that he was biting through to bleeding again and that we really needed some guidance on how to get wean something off as quickly as possible.  They called back and said to up the Lamictal (the one that has been making him so angry) and then we'd see about weaning later.  I growled a lot and told them that they needed to come up with a better answer.  This was at 5:00 on the Friday before Labor Day weekend so we knew that we were on our own until the following Tuesday.  \

On Sunday Owen woke up in the best mood we had experienced in ages.  All day long he was as happy as could be, until 5:47pm when he had a nasty seizure.  Boo!  But he woke up on Monday in a good mood again and so we decided that we would try increasing his dose.  Rather predictably his mood went right downhill.  One week later - yesterday - we upped the dose of Lamictal again to get to the final dose that the doc wanted.  Owen's day is a roller coaster of really good moods and really, really angry swings. The anger tends to pass fairly quickly, but it's very intense.  Today I called and told them that we were on the final dose that he wanted, and asked what the next step was.  The doc was out today, but his nurse called to verify all of his dosages and said that they would call us back tomorrow with a plan.


SCHOOL
And finally school. Things are going well at school and we're settling into a routine.  I really do think that having the background noise has helped Owen practice picking out individual voices.  He has also been babbling more and has been more interactive.  So I think the stimulation is doing some real good.  Owen is also quite fond of the playground. 

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And in this one I swear he's saying, "I can do it Mommy, I can climb this!"

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And I have no doubt that he will someday!
 
 
 



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