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!
 
Surgery Dates and New Features
So firstly I realized that I had never updated the blog with the actual surgery date.  Owen will have his Chiari decompression surgery on March 14th.  While I understand that it is a totally unrealistic idea - I just wish that when you decide to have surgery that they could put you on the schedule for the next day.  The month and a half of waiting is really hard to do, but I think that over the years I have gotten at least a little bit better at it.  It at least gives us some time to prepare and get things in order so that we can concentrate on just the surgery and the recovery if we have all of the other daily stuff taken care of.

Part of the preparation is putting in a bit of time upgrading this blog.  It doesn't really look much different, but emails have not been going out with the updates lately (who knows what they did on the servers to make that stop working) and I got that fixed (I hope).  I also have really wanted to add the ability to have the blog show up in News Readers and to have the update times work properly for those using a Blog List in their Blogger Blog (say that three times fast).  I have finally managed that.  You can follow the link on the right that says "RSS Feed" and copy the address from there into your Blog List widget on Blogger, or into your News Reader or you can just copy it here: http://www.fetalhydrocephalus.com/hydro/SIblog/feeds/rss.xml 

Otherwise we're just hanging out and enjoying the wildly swinging weather. One day we're laughing in the sun:

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And even getting to have our lessons with Ms. Pat outside:

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With big thanks to Ms. Pat for being a good sport and joining in the outside fun!

But then in the blink of an eye we were out playing in the snow...

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Not a bad way to pass the time!
 
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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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 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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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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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!
 
Status...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



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

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Swings and Things

Things are chugging along here.  The school year is winding down, the days are warmer and we've spent a good bit of time in the pool in the last few weeks.

I took this cute picture on May 11th:

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of Owen eating snack with his classmate at school. You can see that he has graduated to the big boy chair and can now eat from a plate.  In the past Owen has considered a plate to simply be a tool that allowed him to dump more food onto the floor in one motion than his hands alone could accomplish. We are getting closer to civilization - now if only we could get him to figure out what a spoon is for.

May 22nd was the open house at our local rescue squad. We decided to bring Owen down so that the EMT's could see him when he was actually concious and breathing all by his little self.  They were giving tours of the ambulances, but we felt that perhaps we had seen enough of the inside of this one already and just took a picture of it:

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The best part was Owen snuggling with Angel and Melissa, the two EMT's that have responded most often to Owen's little incidents:

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These guys do all of their work on a volunteer basis and we can't thank them enough for all their hard work!

Let's see, what else has been happening?  Well, we have been having some success with our quest to find effective seizure meds.  He has been having a seizure every two weeks almost like clockwork for a while now.  Each time we up the meds, and each time the seizures get less severe.  Last Sunday he had one that we almost didn't notice.  I went upstairs in the morning and he coughed a bit and threw up just a little - which considering he had a cold wasn't all that surprising.  He seemed fine but when he tried to drink he had a real hard time getting it to his mouth and he had trouble standing up - he was just uncoordinated for an hour or so and then he was fine.  No convulsions, no breathing problems, no long nap - much better than the previous ones had been. 

Our biggest issue with the meds right now is that while they seem to be making the seizures less severe - which is great - they are also keeping him awake for hours at night and then he's tired and cranky and aggressive the next morning.  We had an appointment with the neurologist today and he thought that since the meds were working on the seizures that we should try to keep them.  Since we do need to get him sleeping at night however, he did suggest that we try giving him a dose of Melatonin before bed.  Melatonin works with your body to tell it that it is time to go to sleep in a natural way.  He prefers this to sleeping pills that can interact with the other meds and cause other issues.  We tried it tonight and he was asleep by 8:15, which is much better than the 10:00 or later that he had been doing since we upped his Zonegran a few weeks ago.  Now we just have to see if he sleeps through the night.

The Swing
Back in March I posted this picture on our family blog:

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This is Owen in his Fisher Price Aquarium Take-Along Swing.  It was his favorite thing in the whole wide world to do.  He would crawl across the whole house to get to it.  I highly recommend this swing for infants, it folds up to a tiny package, when you pull the fishies on the sides it plays music and lights us, there are floating fishies in the side panels, it cradles them in a way that supports big heads and there is even a fishy on the strap to play with:

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I would not, however, recommend this for your three and a half year old.  Sadly, the plastic arms cracked a few weeks ago.  While I give Fisher Price credit for it holding up for so long, and for it failing in a way that Owen didn't even really notice let alone get hurt by, it was clear that it was time to replace the beloved swing.  So, I headed out to the workshop to make him a bigger swing that could support a growing boy.  And here it is:

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This is a still shot of Owen clapping when I put him in it!  My apologies for the mess visible around the swing, I was so excited to try him out in it that I didn't clean up the construction mess first. 

I kept the old seat cushion complete with fishy on the seat belt:

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And here he is checking out the floating fishies that I embedded in the supports:

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A side view:

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And his sister enjoying swinging him with some of the rope that was leftover from stringing on the canvas:

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I still have to mount the light/sound bar to finalize the effect, but when I tried to take him out of the swing he held on to it and didn't want to leave so I think that it will be a hit. There is plenty of room for him to get taller so he should get a few years of use out of it.

I will leave you with a few pictures of Owen and his sister in their pajamas the other night:

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