Drake's seizures are on the increase again.  He's been acting a bit spacey most days and we think we're seeing several absence seizures daily again.  Wednesday night he had a pretty nasty seizure that started in the bath (OMG those are scary!); it required Diastat to stop it - the second time this month.  The neurologist ordered more blood work to see what's going on with his med levels.  We see the Neurologist next week to review last monthes video EEG, discuss the recent changes and decide where we go from here.  It's always a roller coaster with Dravet.

This morning we went to get that blood work done.  We've been to the lab enough now that the techs new who we were the moment we walked in.  They were thrilled to meet Sushi.  It was the least stressful trip to the lab ever - thanks to tethering!  Usually Drake is all over the place, climbing on people and trying to get back behind the desk to "help" the techs as I'm filling out paperwork.  Today, Drake was tethered to Sushi, so he couldn't wander. They both did wonderful.

Afterwards we went to Panera for hot chocolate and coffee.  Again, a wonderful experience thanks to Sushi.  I left Drake tethered while we sat at the table, and while Drake got up from the table several times, he couldn't get very far.  Realizing that he wasn't going to be able to just wander and say hello to all the business people there, he eventually laid down on the floor and cuddled with Sushi.  One very kind woman stopped by our table to ask about Sushi and Drake.  She told me she is a speech pathologist and works with deaf children.  She was amazed by Sushi and how much she was clearly helping Drake (and me).  It was so wonderful to be able to sit and have an actual conversation with someone while out with Drake - in the past I would have been so stressed from chasing him down and would have given up 10 minutes into the trip and headed home.

We've got a bit of snow here.  In the past, Drake has despised being in the cold and snow, but today he was showing a definite interest in it.  I think we're going to bundle up and go play in it for a bit now that he's up from his nap. :)

We had plans to go out last night with a couple other families.  We were going to take the kids to a giant indoor playground place (bounce houses, swing sets, slides, etc) and then dinner.  Sadly, DC has come down with the cold the rest of us had last week, so he wasn't feeling up to going.  I was feeling brave, so I decided to take the boys on my own.  I am SO thankfully that Kevin is old enough and has matured so much in the last year that I didn't have to worry about him at all.  He took off playing the moment we got there and found me about every 15 minutes or so just to check in.  Drake was a little yo yo - he couldn't decide what he wanted to do, so he ran from one activity to the next at lightning speed while Sushi and I tried to keep up (difficult to do with the swarms of kids that were constantly attached to the dog!).  I didn't mind all of the uninvited attention Sushi received though - she behaved beautifully (other than trying to climb into a couple people's laps when they paid attention to her) and it was a great opportunity to talk a bit about 4 Paws and epilepsy.  I wish I had info cards I could have just handed to people though - I never managed to finish a conversation because Drake would be running off in the opposite direction again.  Add it to my to-do list I suppose.  Feeling REALLY brave, I decided to go ahead and give dinner out a shot as well.  There were five adults, five children and a service dog at our table at Max & Erma's.  Sushi again impressed me to no end.  I hadn't even given her the "under" command yet and she was under the table and getting situated.  She hardly moved the entire time we were there - even when I had to get up to chase down Drake who wanted to wander off and visit with all the other restaurant patrons every now and then.  At one point, tired of chasing him down, I suggested that Drake crawl under the table with Sushi (an idea I had received from another 4 Paws family) and to my surprise, he climbed right down, layed his head on her belly and snuggled with her for several minutes.  We were all exhausted when we finally arrived home.  But I'm thrilled to say, WE DID IT!  No major meltdowns, no major seizure activity (there were a few brief absence seizures, but that's pretty typical again these days), nobody got hurt or lost.  I'd call that a success.

I've been trying to write this entry for a week now.  Seems something always happens right after I sit down to type and I get pulled away.  Hopefully today I can finish it...even if I don't, I will post as much as I manage to type up at least. :)

I can hardly believe it's already been over three weekssince we brought Sushi home.  We've been busy busy busy!

Only three days after returning home, we had to pack up and head to the hospital for a scheduled 72 hour EEG.  Sushi Drake and I spent three days in the hospital, with Drake's head connected to a computer by dozens of tiny electrodes.  Sushi did great in the hospital - considering there was little room for her to play/let off some steam!  Drake managed far better than I could have dreamed as well.  Though about 40 hours into the testing, he developed a nasty stomach bug that resulted in vomitting and therefore not getting his seizure meds and that resulted in several seizures; good for capturing on EEG, but not good for a mommy's nerves!  I can't say I noticed Sushi alerting to these, but in retrospect, it seems like she may have been pacing the room a bit beforehand and was very anxious and kept trying to run down the hall as nurses/doctors entered the room during them.  Then again, that could have just been due to all the commotion of so many people coming in and out of the room.  Anyway, we all survived our three days there. :)

Then we had a few days for last minute preperation for Christmas.  Spent Christmas Eve at my parents home - dinner and opening presents.  I'm so thankful that they live in the same town!!  I had really hoped Drake would start to understand the concept of presents and Santa this year, but he showed no real interest again.  He did open a couple presents at my parents house and of course, once he came across something he liked, he just wanted to play with it.  Kevin however is a pro at presents now.  He whipped through his before I realized what was happening! lol  After getting home and the boys tucked into bed, Santa made his appearance.  The boys woke Christmas morning the find a small trampoline under the tree.  It had pillow pets and their stockings on it and Drake couldn't wait to throw that stuff aside so he could jump. :)  We waited a bit for my parents to arrive, then got into the gifts.  Poor Drake had no interest.  Grandpa was able to get him to open a few and then they sat and played with his puzzle and big nesting blocks while the rest of us did our thing.  And about the time that was all over, my sister and her three teenagers arrived.  To say there was chaos is an understatement.  I'm really surprised Drake handled it so well; you could tell he was totally overstimulated, but not a single seizure or meltdown resulted.  A Christmas miracle!  Sushi on the other hand was very confused and had a terrible time with obedience through all of this.  As difficult as it was for us, we tried to be consistent and not let her get away with breaking commands - that meant a LOT of constant corrections and reinforcement, which made it feel like we were missing out on the joy of the holiday some of the time.  But, we knew letting her just wander and get into things she shouldn't could have devestating consequences the next day (once they get away with a behavior once, dogs tend to repeat it and it becomes much harder to correct - kind of like kids!).  All in all it was a wonderful Christmas; and having Sushi there was a wonderful reminder of the amazing gift you all gave to us!  It's hard to believe that it was only about 6 months ago that we first applied for a service dog...I never dreamed then that she would be here by the end of the year. 

In the week since Christmas we've just been trying to recover a bit from all the time away and the busy holidays.  I'm finally starting to get the house back in some semblance of order and we're working hard to get the boys back into some sort of normal routine.  Drake who never wanted anyone near him when he went to sleep has now decided he can't go to sleep without someone lying next to him.  As wonderful as it is to cuddle with him a bit after two years of him never really wanting to cuddle, it's daunting to have to spend at least an hour just trying to get him to nap and up to two hours trying to get him down for the night.  I had hoped he'd enjoy Sushi's company at sleep time, but she's still too puppy-ish and wants to dig in the bed or find things to chew up; plus Drake's still not real happy most of the time she gets too close, so for now, she sleeps in her kennel in his room.  I hope this will change in the next year and we can transfer his need of having someone lie with him to having Sushi there with him.

I was getting really nervous that by New Years Eve we still had not found time to practice tracking at all.  DCs work schedule has been pretty crazy as he tries to make up for being gone for so long, plus he hates the cold more than any of us, so he's not been too kean on spending time outside. lol  So my mom helped me out with some tracks on NYE.  The first time we tried outside, they weren't hiding where I expected them to be and I didn't really listen to Sushi when she kept trying to go beyond the point I expected them to be - shame on me, because she was right!  The second time she got distracted and I couldn't get her back on the track for anything. :(  So we took a break and then tried one more time.  That time, we both did perfect!  Yeah.  I was so afraid we'd both completely forget how to do it; so glad it only took three tries to get it right.  Later that day we headed to Kohl's to try a couple indoor tracks.  Sushi had really struggled with some of the indoor tracking during training, but she breezed right through them for me this time!  Hooray!  During training we ended up having to stuff tennis balls in Drake's pockets to get her to find him successfully.  We didn't do that this time (though I think she may have seen me passing my mom the hot dog treats before we started. lol); I'm hoping this is a sign that bonding is beginning to happen between the two of them.  Bonding is critical to tracking.

Bonding between Sushi and Drake is going slow, but I am starting to see very possitive signs.  Drake use to scream and cry anytime Sushi got too close and rubbed her nose on him or licked him.  But I've been playing up how fun it is to get kisses from Sushi; and a couple of days ago he started giggling and saying "kisses" when she walked by and licked him.  Now he'll come from another room to tell me Sushi kissed him, instead of running to tell me Sushi was bad or bit him (he'd point to his arm where she sniffed/lick him and say "ashi ight" to say Sushi had bit him - I knew better).  Yesterday we saw a HUGE step forward in the bonding.  Drake was sitting at the table eating a snack.  Sush was across the room lying on her side.  Drake all of a sudden slid down from the table and went to Sushi.  He first tried sitting ON her, lol.  But when I slid him to the floor, he laid back to rest his head on her! He laid there for a minute or two until she started getting wiggly and then they kinda squirmed around "wrestling" with each other - Drake giggling the whole time.  Yeah!  I think he's starting to really like her!! :)

Well, today is back to school day for Kevin.  I need to start getting his school stuff organized and try to get in a shower before the boys wake up.  I'll upload pictures from the last three weeks into the photo section later today - there's too many to post here. :)

I can't believe we only have one more day of class and then our public access test!  On one hand, I'm very excited to get home and try to get back into our normal routine (as much as we can, considering Drake will be in the hospital for 3 days next week for an EEG and then we have the holidays), but on the other hand I'm a little nervous about going back home and being all on our own with Sushi.  It's nice to know whenever we have questions, there are trainers right there to help us out!  They are wonderful about sharing their cell phone numbers however, so I just have to remind myself that we can call at anytime; plus, I just found out that Jeremy only lives about an hour from us, so we could always just show up on his doorstep! lol  We're also just starting to get to know some of the other families in the class and it will be sad to say goodbye to them.

Today we started the morning out working a bit more obedience.  Jennifer had us each work with our dogs with distraction work, healing, tethering to see how things were going and gave pointers with any potential difficulties she saw.  She also brought out a big container of chicken soup and had us work with the dogs to make sure they were not tempted by it, even if it was pushed right under their noses!  Sushi did fabulous with that one, but some of the other dogs were definitely tempted, so Jennifer worked with their "parents" on the proper way to practice this.  Obviously with dogs that will be going everywhere with us, we can't have them trying to eat every morsel of food they come across; could be very difficult when laying under a table at a restaurant.

Then we headed back out into the bitter cold to do another track.  I hid with Drake and Kevin while DC handled Sushi on the track.  I guess they got going so fast that she flew right past the corner where we turned, but with a couple pointers from Jeremy, DC backed up to the last spot he was sure Sushi had the scent and they were back on our trail.  So cool to watch all the dogs on these tracks - even if it is only 20 degrees outside!

In the afternoon we spent some time asking more questions about tracking and talking more about grooming and veterinary care.  After class, our family stayed behind to talk with Jessa a bit more about seizure work.  She helped me figure out how we can work with Sushi so she'll bark during complex partial seizures (we only talked about tonic clonics last time).  The downfall is that she may bark whenever Drake just stares off because he's daydreaming too, but we feel the minor annoyance of that will be worth it since these seizures are usually the ones that last the longest for him, so it's critical we are alerted and can time them in case it goes over the 5 minute mark when he would need Diastat (emergency rescue med).  Hopefully she doesn't generalize it and bark anytime anyone starts daydreaming however...I don't think the kids at school would be very appreciative of that! lol

While napping in my lap during training this afternoon, Drake started jerking in his sleep.  We've seen him do this quite often in his sleep (it's one of the reasons we're going in for the video EEG next week), but this is the first time I really was right with him to observe it so close.  He would jerk a leg, then an arm, then his whole torso/chest, and so on.  Some of the jerks were just small twitches, some were so large that his whole body would lift up off mine.  I also noticed that his heartrate seemed to be elevated and DC commented that his lips looked bluish (before he realized Drake was doing all this jerking around).  I'm pretty sure that this was seizure activity, but we can't know for sure without catching it on EEG.  But knowing my son, he'll be hooked up for three days and not ever do this.  Have I ever mentioned how frustrating epilepsy can be?!

Sorry no pictures today - don't know why I never thought to take the camera out today!  Will try to get some shots while we're in the mall tomorrow - assuming Drake's not melting down the enti

I can't believe it's been three days since my last update.  The days are so long and exhausting here that by the time the kids are in bed in the evening, all I can think about is getting myself to bed too.

Things have been going quite well.  Drake and Sushi are starting to bond a tiny bit - in fact, tonight he asked for her to get in bed with him; however, the excitement of having his dog in bed is resulting in him constantly getting out of bed and refusing to go to sleep.  DC is trying to moderate the activity in the bedroom, but I think he's getting frustrated with these "games." lol

Since it's been so long since I updated, I'll just do a brief update.  We've been working on some additional obedience commands, including "stand" and "back."  We've learned about tethering and put this to practice once in Kohl's on our own last night, and once today in the mall with the trainers there to observe and give pointers.  It's amazing to watch Drake pulling for all his worth, trying to run in the opposite direction while Sushi just stays planted firm on the ground or holds to a heal as best she can, not letting him get away.  I can't begin to explain how wonderful this will be in every day outings!  We've also done more tracking out in the bitter cold and inside the mall.  Sushi's doing great learning to track Drake's scent and DC and I are picking up on how to read her cues and when to follow her/when to wait.  We've also been learning some of the behavior distraction techniques.  Many of them won't work with Drake because he's still so small and the full weight of Sushi's body on him could be too much, he doesn't like being licked, and if she paws at him it could knock him over.  But we're paying close attention to the information on how these things are trained, so we can retrain these things down the road.  For now, we've learned that we can have Sushi lay her head in Drake's lap when he's sitting in a chair or the floor.  He can then pet her head/ears to get some sensory input and remain calm.  We can also redirect his tendency to throw things by allowing him to throw a ball for Sushi.  He's been kicking a lot lately, and we haven't come up with a good behavior disruptor for that yet, but we were given good tips on how to desensitize Sushi to it, so she doesn't start to slink away from him because he's been hurting her; of course, we'll continue to work with Drake to get him to stop kicking her as well, since we certainly don't want him hurting her.  We've also learned a few of the tricks that the dogs know.  Sushi knows "shake," "high five," "give me five," "go to sleep," and "roll over."  Fun. :)  We also learned about safe toys (rawhide and plush toys are not good options) and some basics about grooming.

Today as we arrived at the mall Drake was sound asleep.  He's not been getting his full naps and hasn't been sleeping nearly enough at night, so he's VERY tired (surprised we haven't had constant seizures!).  We had to wake him to change his clothes since he was still bundled up from the morning outside tracking session and he lost it.  He kicked and flailed and screemed the entire time we were changing him, all the way into and through the mall where we were meeting the rest of the class.  We laid him on the ground and planned to just wait it out...Sushi went to him all on her own and laid her head on his belly.  She also tried giving him kisses and quickly learned that made things worse, so then she just laid down next to him until he was ready to get up and walk around.  We haven't had much time to work with her yet and teach her that these are the things we want her to do when Drake's upset, yet she did it all on her own.  So proud!

Well, DC is still struggling to get Drake to sleep and I'm in charge of getting Kevin to sleep before 10pm again (Melatonin here we come!)...plus, I just learned they have chocolate chip cookies in the lobby in the evenings!  So, time for me to get Kevin the melatonin and then pretend to be taking Sushi out to potty so I can hunt out some cookies.  Goodnight all :)

Since I was too drained to write a post yesterday, please visit 4 Paws for Jacey to read another mom's great post about everything we did yesterday.  Our trip to the mall was near disasterous.  Sushi does NOT like her harness, the mall was PACKED and we had a tough time getting her to follow commands.  On top of that, the lack of sleep and sensory overload from being in a huge, crowded mall (we avoid stores of all types because it's usually too much for him on a good day) was way too difficult on Drake and I ended up having to carry him out kicking and screaming without a jacket into the bitter cold while DC stayed behind to continue working with Sushi and Jeremy.  Back at the car, Drake's tantrums turned into the meltdown to end all meltdowns; he kicked, hit, and screamed so hard his entire body shook and he turned beet red, eventually going a bit hoarse from all the screaming.  I'm seriously surprised nobody called the police to find out why there was a child screaming like that in a car!  By the time DC got back to the van with Sushi, I was in tears, feeling like a failure as a dog handler and as a mother.

Thankfully the evening and today went much better.  Last night, after everyone had rested a bit, we spent some time playing ball in the room with Sushi while she was wearing her harness.  We're hoping by doing this regularly, we can start to lessen her negative feelings about the harness.  She practiced "place" and did beautifully.  Drake even spent a few minutes beside her on the matt.

This morning we headed back to 4 Paws where Jennifer worked with us on reinforcing the commands we've learned so far.  We practiced having the dogs remain in a down while we dropped the leash and several distractions were placed around the room, including one dog working on healing with a shopping cart weaving in and out of the circle of dogs laying down.  We learned about the "come" command, something most of us have already been using just because it's so common.  Jennifer explained that we should not create a negative with "come" by always making the dogs stop playing when we ask them to come.  Instead, about 90% of the time, we should call them with "come" and then toss a ball or give them a treat so they don't start avoiding us when called.  Then it was time to head back out to the park for another round of tracking.  This time, daddy and Drake hid without Christy; not only was there about an inch of snow on the ground and a good amount of wind, but we would test whether Sushi could transfer tracking the scent of Christy to the scent of Drake.  I followed along as Jessa began the track and about halfway through I took over the flexi-leash.  Sushi stumbled a few times, but it didn't take her long to pick the scent back up each time and take me right to her boy!

After lunch Jeremy gave everyone a chance to ask questions about tracking.  Some people had great questions about unique situations they've run into in the past when their children have gotten away from them.  So far, when Drake has gotten out of the house or wandered away from us outside, he hasn't wandered any further than the neighbor's house; so I'm tucking everything discussed away in the back of my mind, because I have no doubt we will one day encounter some of these scenarios as Drake grows bolder with his escapes.  At the end of the day we were given our own flexi leash and a buckle collar.  The buckle collar can be kept with the flexi near the front door of the house, ready to go.  If we hear Drake go out the door, we can grab them and just strap the buckle collar on her for a quick track; but if it's been more than a few minutes since he was last seen or if we think he'll be farther than a couple blocks away, we'll take the time to put her harness on first.  The harness is more comfortable for distance tracking, since it distributes the dogs weight as she pulls across her chest instead of around her throat.

After class today we just headed back to the hotel the boys, Sushi and I have just hung out and relaxed while daddy logged into work for a few hours.  I hope not practicing tonight doesn't leave us at a disadvantage tomorrow, but after 6 hours of class and not nearly enough sleep the last few days, we're all just exhausted and really needed the break.  The break from "work" seemed to really do good for Drake and Sushi bonding as well.  Sushi was relaxing in her crate when Drake suddenly decided to crawl in with her.  The two of them hung out in there for at least 15 minutes and Drake actually spent part of that time petting her while she rested her head on his lap.  I was once again in tears, but this time, they were happy tears! :)

Tomorrow morning we'll learn about tethering and do another outside track (man I hope it's not snowing again!).  In the afternoon we're back at the dreaded mall.  Hope we survive!!!

What a day!

This morning we managed to get out of the hotel and to 4 Paws a bit early.  While DC stayed inside to get the boys settled in, I took Sushi outside to run and play before class started.  She, of course, zeroed in on a ball and had a blast chasing after it when I threw it for her.  Then her classmate, Zoom joined in on the fun and the two of them took turns taking the ball while the other chased.  It was fun to see these dogs really let loose after being so good in class.  Tomorrow I'll have to remember to take my camera out while the dogs play - there were so many great picture moments this moring!

We started tracking today.  While half the class met at a park to do their first track, the other half met at 4 Paws to work on more obedience commands; we were in the second group. After a brief question and answer session with trainer Jennifer, we reviewed the things we had previously learned.  We were introduced to Gentle Leaders (something I've used in the past and am very comfortable with) and given the opportunity to try those with the dogs for heeling if we wanted; after the trouble I had getting Sushi to heel last night, I jumped at the chance.  It was amazing what a difference it made for me to handle her; but Jennifer explained that these should be a temporary solution only for now.  So in low-key situations with minor chance for major distractions, I'll continue to work on perfecting the use of her regular training collar, but when we're heading into potentially more difficult situations, I will likely put the Gentle Leader on her. 

Then it was our turn to load up and head to the park.  We watched as other dogs went out on their track before us.  You could tell Sushi was super excited and could hardly wait for her turn.  She began barking at one point and when I tried to correct her, Jeremy explained that this was actually a good thing; we want them to be super excited about tracking and to begin barking when the person they are trained to track starts walking away; this way, if Drake were to start wandering off Sushi will begin barking.  To her, his walking away would signal the start of her favorite "game", tracking and in turn the barking will alert us to the fact that something is up with Drake (since she's also being trained to bark during a seizure, we'll have to look around to see where Drake is to know whether she's barking for "tracking" or seizure alert).  Right now, Sushi associates the tracking game with Christa (I think that's her name...I'm terrible with names), so when it was our turn, Drake and I walked with her to hide.  Tomorrow DC will go with Drake, the next time another parent will go with Drake, etc, so the only constant with Christa's scent is Drake's scent; at some point, Drake will go with another person without Christa, transferring Sushi's "drive" to Drake's scent.  So, we were hiding behind a big pine tree and DC followed as Jeremy led Sushi on her track.  I guess she got a bit confused in the beginning (Jeremy later explained that this happens sometimes because of the additional scent mixed with Christa's), but it didn't take her more than 5 minutes to find us.  I'm really looking forward to seeing the tracking end of it for myself tomorrow!

After lunch we met back at the facilty.  We learned the "under" command.  This is one I've been waiting for.  I've been hesitant to take Sushi when we go down to the hotel lobby for dinner (we're not allowed to take her anywhere else "public" yet - we don't know enough commands and need LOTS more practice still), for fear I wouldn't be able to get her to lay down somewhere out of the way.  She did great with the command in class, so we got brave and decided to take her with us to dinner tonight.  I handled her while DC got the boys settled and fixed our dinner plates.  I gave her a treat about every 5 minutes and we did pretty good - I only had to give her two minor corrections during the 30 minutes or so we were there!  She even remained in a down when Drake decided to use her as a step stool to get up into his chair - she got LOTS of treats for that one! lol

Anyway, I digress...after learning the under command, Jeremy took over again and spent the rest of the afternoon explaining the ins and outs of how tracking works.  It was a lot to absorb, but I think I have a decent understanding of how it works...but don't ask me to explain it to you! At the end of class, the dogs received their harnesses.  Sushi's not real fond of it, but after she was in it for a few minutes, she did fine with it.  I think once it's broke in a bit more so it's not so stiff, she'll be good with it.  We also were given a short leash to attach to the harness if the kids want to hold onto the dog's leash.  Drake LOVED this and held the leash almost the whole way to the car.  Now I really can't wait to learn about tethering!!! 

Drake is still showing very little interest in Sushi, though he does love giving her treats, so we basically let him give her as many as he wants, whenever he asks right now.  We did notice today that he was happy to sit and play beside her quite a bit; yesterday he wanted to sit in our laps and watch music clips all day, today he only did music for about 15 minutes!  I'd say he spent a good 2 hours (broken up of course) out of the day bringing toys over and sitting on the floor beside her playing. Tonight in the hotel room, we spent quite a bit of time encouraging him to play with her...it took a while, but at the end, he was sliding off the couch (head first) and then crawling under her body like a tunnel and at one point sat down under her and kept saying "where's Drake?"  That's so encouraging! 

Everyone, including Sushi is really tired tonight, so we decided to not do much practicing.  I'll practice with her a little when we go out for her last potty break, but that's it.  The boys are already all asleep - much earlier than the last two nights...I think it's time for me to make that last trip out for Sushi and get some shut eye too!