Year In Review-Part 3

This is part of a series catching up on 2013!  See the other posts here:  Part 1 and Part 2

SEPTEMBER
Cole doesn't start school on time.  He is just too unstable.  We see a Integrated Medicine doctor.  An MD, that also practices natural medicine.  She has a theory about my adrenal insufficiency.  Cole finally makes it to school.

 We LOVE his team!  We totally know what it is like to not have a support system at school and consider ourselves so incredibly lucky to have the amazing people here.  He really struggles and has to start wearing a bib in September that has to be changed constantly because of the drool.

 I even send him to school in his wheelchair when he can not hold up his head or walk.

 Has not been eating at all for a few months and has been solely tube fed.  Sometimes it is nice to have breakfast where super hero gear is mandatory.

Made a custom letterpress invitation for Gourmet Club.  Find out I need double knee replacements.  Start 6 weeks of collagen injections under my kneecaps.  I am a huge fan of Lidoderm patches, even if you run out of regular Co Flex and need the dinosaurs to keep them on ;)

 We continue to explore treatments for Cole.  He is really struggling.

 Government Shutdown starts.  Total Major Seizure Count: 273

OCTOBER
I am asked to give a class on Style for a group of young women.

 I go to New York for a conference.  We get adorable family pictures taken by my talented friend.  Celebrate Slugger's birthday with a trip to Cox Farms.

 The light goes out of Cole's eyes and he is zoned out for over a week.

 I host Eat, Drink and Be Scary!  Had so much fun with my theme this year.  Glowing green ice cubes, dry ice, all sorts of fun and fantastic food.

 Cole pulls out his g-tube.  That makes my heart race more than any seizure nowadays.  Cole is on antibiotics.  School is like a petri dish.  I break my foot, nothing they can do about it.  It's Diffendoofer Day at school.  I take Cole to the zoo.  Decide to take Cole off of all benzodiazepines.  He is a full blown drug addict.  His body constantly searches for the next "hit" and ends up having more seizures because of it.  Long story short, rehab at home is not fun.  Realization that the hospital just can not help us any more is difficult.  I start seeing a doctor about losing my hearing and Tinnitus.  I will probably write more about that later, maybe...don't hold your breath :)  We are Super Heroes for Halloween.

 Meet Captain Canine, Super Cole, Tiger Mom and Dad...who doesn't need a secret identity.  Total Major Seizure Count: 200

NOVEMBER
Fall weather is perfect.  The leaves are amazing.  Cole gets sick again.  More antibiotics.  We start dealing with thrush as a side effect of not eating and drinking by mouth.  We go to the Newseum.  Fall baking is in full force.  Cole starts having cycles of "good days" and "bad days".  6-9 days that are almost seizure free, then 3-4 bad days where he can have 60+ major tonic clonic seizures in one day.

 We are just grateful.  Even though the bad days are really bad.  The good days are good and he can recover.  Before, he was having bad days, every day and was regressing because his brain and body never had a break.  Cole stops having nocturnal seizures every night.  Only when he is in "cycle".  After 7 months of fighting with Medicaid, we get 16 hours a day of nursing.  Totally changes our lives, since we can now have night nurses.  We are getting to see glimpses of our little boy coming back.

   Total Major Seizure Count: 257

DECEMBER
We have ice storms and more snow than we know what to do with.  DC seems to panic and shut down every single time there is a storm.  I get cortisone shots in both knees so I can play tourist with Grandma and Grandpa when they come for an early Christmas.  We eat a lot.

 Don't get to go home for Thanksgiving, Christmas, New Years, birthdays, baptisms or Grandma and Grandpa's LDS mission farewell.  However, Christmas Day is fantastic for Cole and it is the first holiday ever in 6 years that he has enjoyed and was able to participate in traditions.  Best day EVER!

 Mom gets hearing aids for Christmas.  They are actually quite small and blend easily.  You can see here where I have a top knot, you can still hardly tell they are there.

 Again, I will probably, maybe write about the emotions connected to this.  Total Major Seizure Count: 204

All in all, we had an absolute whirlwind year.  This is the major Reader's Digest compact version, with a lot of holes.  Sometimes it is amazing to take a step back and realize how much can change in twelve months.  All that matters at the end of the day is we are trying our best.  I still get to snuggle this little guy who is not so little any more!  He is a true warrior and makes me want to keep fighting, even when it seems like I don't have the strength.

Unpredictable

We all know by now that Dravet is unpredictable and always changing. Especially while kids are young. Take this week for example. Cole has been doing really well, only needing a small dose rescue meds a couple of times a week for the last couple of weeks. Wednesday he had a lot of small seizures and struggled near the end of school and into the evening. Schools have been closing for Norovirus out here and I decided to keep him home on Thursday just in case he was getting sick. Thursday rolls around and we are supposed to have beautiful weather. 70 degrees! I couldn't just stay in the house, and Cole was doing really well, so I pulled a spontaneous trip to the zoo for a couple of hours out of no where. I was supposed to be going over to a friends house for something, but we ended up convincing them to come with us! Who wouldn't like to skip school to go to the zoo? (Mind you, their mom is responsible and we waited until they finished school to go).We were only there for an hour, which some people would say is not worth it, but we had a good time. Cole did great and Slugger was as much of an attraction as the animals on display. Everywhere we went, we heard kids say, "Look! It's a dog!" Who cares if there are lions and tigers? There's a dog here! :)

The animals seemed to get a kick out of Slugger too. Especially these donkeys at the children's farm. They were not paying any attention to the masses of pre-school kids on field trips, but when we walked up all 4 of them ran up to the fence and were totally interested in Slugger!Can't you just hear them say, "Hey, man! How did you get on the other side?"We came home and Cole ended up having a really weird seizure where he curled up in a ball and was extremely sensitive to touch. Never seen that kind before. Regardless, I sent him to school on Friday since it was one of his friend's birthday and he had been doing fine all morning. I was in the bath when I saw the nurses name pop up on my phone (yes, people..I bathe with my phone. I need to hear it if Cole is having a problem in school). I knew it must be a seizure, so I jumped out, dripping hair and all and ran around getting dressed while she explained what was going on. It took me 6 minutes, a little longer than usual *wink* , from the time she called me to the time I got there. Yeah, I am sure that I was quite a sight! Mascara circles under my eyes, looking like a drowned rat. I never could pull off the wet look :) So thanks Dravet, for reminding me that I do not have the right to shower-even if I am alone in the house.

This particular seizure was, once again, different than what we have been seeing lately. He bit his tongue, which he has only done once before, so he was bleeding (me-I am not so lucky). He also just passed out and went into a full tonic-clonic, no small leader seizures. He used to do this all of the time, but it has been a while since he has just fallen on his head. He has a nice bump to match the permanent one on the other side. A constant reminder of the days when he used to have atonic drop seizures and would hit the same place over and over as he fell. Lots and lots of drool and for a while I thought I was going to have to take him to the ER for suctioning. Even after the seizure stopped, he was really junky and I could hear rattling in his lungs. I was pounding on his back and encouraging him to swallow, but he was unconscious. I was certain he was going to aspirate. Every time without fail, when we go to the hospital (no matter how long we are there) Cole picks up whatever is floating in the air. So you can understand why I was hesitant to pack up and possibly make things worse. After a 3 1/2 hour post ictal phase, he woke up and was able to clear the phlegm. Thank goodness!

So, same jacket, different day. Same little boy, different conditions. Through all of this though, Slugger remained a constant. He alerted 45 minutes before the seizure and then again 10 minutes before. The nurse didn't recognize the first alert, so I guess he really wanted her to get the message. We are so grateful for him. Thank you again to anyone that helped to make Slugger a reality. He has made things that are so out of control and unpredictable, a little easier.

Back to Life, Back to Reality

The Soundtrack for Life started playing the opening of this song as I was stuck in traffic, trying to get to my little boy. You really want to take up residence in my head, don't you? :)

Regardless of having random songs from 1989 being piped into the corners of my mind, yesterday ended a wild streak unlike anything else we have experienced.

My mother-in-law is in town and the weather was perfect yesterday. 60 degrees, in January, and no wind. Cole has been doing extremely well and had made it 5 whole weeks without needing rescue meds to stop a seizure. Let me clarify this...we still have given him meds. With all of the traveling we did in the month of December, we pre-medicated him before flying and going to Disneyland. There was about 5 times that we gave him a small dose of diazepam through his g-tube while we were gone, so he was not totally "rescue med free". Also, he has been far from seizure free. He's even had partial complex and myoclonic clusters that possibly could have used medication, but thankfully resolved on their own. The absence and myoclonics have still stuck around through this good streak, but hey...we will take them over a tonic-clonic (grand mal) any day! SO-Cole has not been seizure free, nor med free. Just that he has not needed medication to stop a seizure and has not had a tonic-clonic (the worst kind of seizure *for Cole) for a long time. Do you feel enlightened? :)

Back to the mother-in-law story....
Cole broke his med streak on Wednesday. His nurse decided that he needed a small dose of diazepam to break a cluster of myoclonics while they were at school. Still, we were thrilled! He had not gone 5 weeks (to the day, actually) since 2009. A huge feat for us. Although we were kind of sad that this magic that Slugger brought seems to be wearing off (as we knew it would), Cole seemed his totally normal self on Thursday morning and we sent him to school as usual. SO, having company in town is very rare and we try to be good hosts (emphasis on try, doesn't always work out that way). I asked our guest if she wanted to go to Mount Vernon, since the weather was good and Cole was in school. In a very strange twist, my husband was working in an office close to home and was able to go and pick up the boy I nanny after school. *Weird, calling myself a nanny...then again, baby-sitter makes me sound like I am 14. So, my ducks were in a row. I don't have to remind you that I never really go anywhere, especially if it is during school when something could happen. However, Cole was doing awesome, Brian was nearby and we had company.Mount Vernon was lovely as usual and there were hardly any people there. I learn something new every time I go and always leave with a deep appreciation for George Washington and the men who helped to found our country. Just as we were deciding whether to go home or extend our stay to include a meal at the Mount Vernon Inn, I got a phone call from Cole's nurse. She let me know that Cole was having a seizure, she gave him medication and that his oxygen sats were good. I told her that Brian was actually already on his way to the school and would be there soon. Our decision was made, we hopped in the car and headed for home.

I called Bri and alerted him to the situation. He has actually never been inside of Cole's school, so I walked him through everything until he got to the classroom. Then I didn't hear from anyone for a long time.

This is the part where my little brain goes into overtime and thinks in its far recesses, "Could this be THE ONE?" The one that finally takes him from us. It is a question that is always there, hanging out in the back like an awkward teenager at their first dance. It has actually moved forward a little in the past few weeks. It is always a sad day when one of our little group loses a child. However, recently a 14 year old boy from England died unexpectedly on New Years day. It rocked our small Dravet family, because this young man was actually doing EXTREMELY well. He was on Stiripentol, practically seizure free and learning new skills all of the time. All of this was rushing through my mind as I was trying to fight traffic, listen to the GPS and look at the pink line, telling me where to go, on the screen that had an awful glare. Finally, I just called Brian, thinking that he had forgotten to call and update me because he was busy meeting the teacher, comforting Cole, etc. He answered and informed me that Cole was still seizing after 4 different doses of medication and that he had called 911. Great. As I am crawling through practical gridlock, I switch our destination to the hospital. All the while, I have the beginnings of a migraine and have not really eaten. So, I am digging through my purse for food, talking on the phone, driving, worrying and all the while trying to play it cool. I'm really glad that I did not get in a wreck!

It threw the entire school off of schedule when the ambulance came. It parked in the front of the school and the buses could not get out. So, the principal had to send out an e-mail and a voicemail to all of the parents that the buses were delayed by a medical emergency. Yep, that's us...the people that made all of your kids late! :)

In the next two hours, there are multiple phone calls trying to figure out how to get the boy I watch taken care of. They would not let him ride in the ambulance to the hospital (which he probably would have thought was really cool), so he was stuck at the school. There are a lot of rules regarding letting people pick up children at school here. Nothing like the standards of my youth. Anyone could show up, say "I'm here to pick you up" and off we went! Not so much in this modern day. There are lists of approved people, you have to be buzzed in, etc. SO-I then switched our destination back towards home. All of this was taking me on different routes and I was getting stuck in the lovely traffic here that could make even the most patient person begin to lose their mind. In the end, we figured everything out and I ended up at the hospital after we stopped by the house to pick up Elmo and The B.

Cole stopped seizing in the ambulance, the entire thing lasted over 35 minutes. When I finally got to the hospital, I heard the whole story. Cole was out on the playground (remember perfect weather?) and was on the slide. Slugger ran up to him as soon as he came down the slide and was nudging and licking him consistently! Hooray! The nurse was aware that something was different and Slugger was alerting. Cole's speech slowed, his eyes glazed but he was still walking and talking. Nonetheless, with Slugger's warning the nurse picked him up and took him in to the school where she gave him a small dose of meds. He was still coherent, but eventually started having convulsions and then things went down hill from there.

My three boys

So, hooray for Slugger! Much easier to take care of things inside and we were beginning to wonder about his capability to alert. Now we just need to keep working on barking.

Our hospital was great again and just let us do whatever we wanted, including no IV. Everyone loved Slugger as usual. Cole went through the normal routine. Waking up, screaming bloody murder for a half hour or so, falling asleep and then sitting up and saying, "I'm back!"He also puked all over me right before he left. Always a treat.

We are just glad that he is okay and will start our countdown again. This last stretch has made us think that there could actually be a day or two that could be considered "seizure free" in the future. I just hate that Dravet has to remind us that it is never going away. The beast reared its ugly head again, but hopefully we can scare it back into hiding.

Meet Our New Friend!

Here is a little video to introduce the kids in Cole's class to Slugger!

We are planning on making a longer one when we get home to introduce them to the idea of the rules that come with a service dog.

Proceed With Caution

I have been known to spontaneously burst into tears in the last couple of days. For those of you who know me personally, you understand that I am not a crier. Same old stuff, just compounded.

I eluded to having nursing struggles in the Labor Day post, but that is just the tip of the iceberg. I try to usually be light and humorous around here and still be honest. I'm not sure if sarcasm can cover up the pain right now. I think I have written this post three times, just different ways and it still just sounds depressing. I do know that I will cowboy up, pick myself up off the ground, dust myself off and start over. It's just my nature. Still, this post is a downer. I also go frequently in and out of past and present tense and first and third person...I really shouldn't be let out into public, let alone blog :) Forgive my grammatical errors. I done did grow up in the country.

Reader's Digest version-School said, "you can't bring a nurse here that doesn't have a contract with the county". They can not even be on school property. So, I have been attending school, 5 days a week. Cole can't ride the bus anymore (remember it is his favorite part). Also, as a random insert, I have a 4 year old that has a major crush on me. He is my little shadow. He saw me the other day and couldn't wait to introduce me to his mom, who informed me that he talks non-stop about "Cole's Mother". Kinda cute, kinda creepy. Back to business. After many, many instances where things just weren't "right", I made the decision to switch agencies. It was a long and complicated road to get to this decision, but I felt like it was time for a change. We decided to terminate another couple of nurses, and things were not getting better, so we ended our relationship with the first agency.

So, I went agency shopping. I threw out an S.O.S. to a local and asked for insider information. My connection suggested an agency that they had been with for an extended period of time. It seemed like the perfect fit. We signed up. This is clear back at the beginning of the month. They start putting a schedule together, we do paperwork, etc. I like them! In the meantime, I am still attending school with Cole. The medical review board has not reconvened. I think that it will all be smoothed out, as I had been reassured in a meeting in APRIL that they have done outside contracts with plenty of other students, you just have to do a little more paperwork and prove that the child needs continuity of care. Paperwork doesn't scare me if it will get me what I want. So I proceed with the new agency, even though they do not have a contract with the school district.

In between all of this, there has been some miscommunication about whether or not we can actually have a contract formed with the school to have an outside agency nurse attend with Cole. Some say it's possible, others say no way. Switching was a bad move. I attended the Medical Review Board meeting, that had been re-scheduled twice, and found that under NO circumstances, was I going to be able to have a nurse, that did not have a contract with the school district already, allowed to go to school with Cole. Okay, this is news to me! We are stuck between a rock and a hard, hard place. They want me to fire my new agency and go with the one they have chosen for me. Which would you do? Pick a name of a doctor off of a list, because it sounds nice...or go with the recommendation of a friend that has been seeing the doctor for years. Yeah, I thought so. I did not want to "compromise". I was being pigeon holed by bureaucracy.

I came home from that meeting feeling so defeated. If someone would have told me 4 months ago when we started talking about this that there was no other way, I could have made the change myself and spared a lot of this. We were back to my original fear-Cole was going to have one nurse for 2 hours when he woke up, another for 3 hours at school and another when he got home. Plus, who knew going to pre-school would be so exhausting? Cole comes home, has lots of clusters, and crashes from exhaustion. I want to do the same, but my brain is clicking in overdrive. He has even had two long seizures at school that his teachers have witnessed. A whole bunch of new people every day would add to this.

I knew that it was not going to be easy when we embarked on this new adventure, and it has not been. I actually had more stress with nurses around than without, just a different kind of stress. Hopefully, we can get to the point where they ease a burden and don't create one. I have not had a nurse since the 7th. It's funny how fast I came to rely on another person to be the eyes and ears. Our new insurance is great, but I spend over 20 hours a week on the phone just trying to work stuff out. I never had to do that with our previous provider. I also am spending a lot more time on stuff like school, applying for grants and meetings, which were not a part of our life in Utah. Oh, add fundraising to that. I could do it all before, even if I was burned out. Now, it's just barely hanging on by the skin of my teeth. If I don't have someone else around, I have no choice but to be with Cole. Everything else gets put in a pile and I don't get to it in a timely manner. Niki cues her OCD recessive gene and goes ca-razay! As much as I don't want to baby-sit another nurse and go through all of the training, again, I need to. I really need the help.

Long story short (seriously, this is still the Reader's Digest version), we had to switch agencies again. After many phone calls, many sleepless nights and many, many moments where I just wanted to break down crying. This is the agency that I was forced to choose through the school district and they can also provide nursing for respite and skilled. One agency, the whole thing. Getting there was just exhausting. I think they are going to work out. They start bringing nurses in tomorrow -cue soundtrack for life, Hallelujah Chorus. However, just because the agency seems great, doesn't mean that we will hit it out of the park on the first try. There is still going to be growing pains.

Also, during all of this, I was solo with Cole for a good chunk of time. Brian was out of town for a week and then was hosting a very important conference the week after he got home, making it almost like he was still out of town. I had someone close to me who passed away and that was hard to not be with my family. Cole got sick and missed a week of school, we had company, we've been doing some major medication changes (more on that later). Then I got sick. It is only by divine intervention that I did not have a seizure or a psychotic breakdown. Remember stress, no sleep, poor eating and illness = not so good for Niki? I pulled through. Angels, seriously. It has been 1 step forward, 3 steps back all month and I am not hospitalized. Total miracle. Although a padded room sounds lovely right about now :)

This was EXACTLY what I needed to hear in the midst of all of this chaos. I am not forgotten. Sorry to get spiritual on here, but this is a message directed specifically to women in our church. Listen to it. It gave me comfort, hope and reassurance that even though I am not perfect...I can find joy. I don't need a golden ticket. I can find triumph in the little things. I need to be patient with myself and not take myself so seriously. As long as I am giving a good effort, it is enough. I also need to remember that the sacrifices I am making are good ones. I can find wonder and delight in even the tiniest journey or success. My time and energy has to go to this right now. Cole is worth it. He really is. I am thankful that I have my beliefs to help me through dark and trying times.

There has been good stuff this month like a Brazilian blow out keratin treatment (life changing!), spending some time with my parents, taking Cole to the zoo again and other stuff. I am not a total Negative Nelly. Oh, and the school just told me in another meeting today that they are not allowing the dog. Bet you can't wait for the next installment, can't ya ;) Welcome to my world, people. Where brutal honesty is the flavor of the day. I'll go give myself an attitude adjustment in the form of chocolate cake and promise to be not so dark and deep the next time.

What Did You Say Again?

We've been completely without nursing for a while now. In some ways it has lifted a burden, in others, it has just reminded me how important it is to have an extra pair of eyes, ears, and arms around.

The story is long and complicated.

I will probably fill you in soon.

If this post seems extremely disjointed, forgive me. This is just how it has been for a while. I have been having a hard time forming sentences and have to ask people to repeat themselves often.

First Day

Hey, sorry we dropped off there for a little bit. We have been more than a little hectic around here. To add to the list of natural disasters, there is now severe flooding and school has been canceled for the first time ever due to excessive rain. Here is Cole's first day of getting on the bus...it is his favorite part of the day.The mandatory first day of school picture. Isn't he cute?
We hope it lasts. We've had a couple of hiccups this week regarding the school, nursing, etc. For a moment or two I considered home school (which is what they wanted). I got my fight back and we'll see what happens next week!

Review

Last week was stressful. Trying to orient nurses to our routines, Cole's seizure types and house rules is more difficult than you would think. It takes a trained eye and lots of practice to decipher what is a seizure, what needs intervention, what doesn't, etc. Then you have to add stuff like where the sippy cups are, which book Cole has to read before a nap, and how to use the 4 remotes for the television, DVR, DVD and playroom ancient TV. I know, we need a universal remote for everything in the house..would you like to buy us one? :) Seriously though, these things take time. On top of it my gallbladder has been reminding me that it really needs to be removed. Haven't cleansed for a while...need to add that to the list. Who likes to schedule time for throwing up though? Even if it does make you feel better in the end! I don't have time for surgery, so it has to be sometime soon. Really people, TMI..I know.

I have also been working on the Medical Review Board for school and had to create or help draft a lot of explanatory documents. One of them is from the doctor, and it was based on this list.
_____________________________________
I need you to express in this letter that Cole is a complicated patient. He has been diagnosed with an SCN1A mutation, and has symptoms consistent with Dravet Syndrome, so that is his main diagnosis. He has other needs that are taken care of by specialists, but we consider his neurological symptoms and all things directly related to his genetic mutation his primary disability. It takes a lot of time to get to know him and all of his various triggers. He has 7 identified types of seizures. Tonic, absence, tonic-clonic, myolconic, atypical absence, atonic, complex partial. To understand what type of seizure Cole is having and if it needs intervention, takes a trained eye and detailed observation over a long period of time.
-It is not certain just how much Cole understands or loses pre, during, and post seizure. He has had to re-learn skills in the past and others with Dravet have been known to lose skills completely. He will require a lot of repetition and patience and we are not sure exactly how much he captures in between his brain "turning on and off".
-He needs constant, 1:1 vigilant supervision to ensure his safety. He is at risk for falls and needs to be constantly assessed and monitored for seizure activity.
-He has no sense of danger and will put himself into situations frequently where he could be hurt. He will run into the street, jump into a body of water, can unlock and open doors, will immediately accept strangers, etc. He will need someone to intervene when he has compromised his safety and remove him from the situation.
-His oxygen has been known to drop very quickly and he needs to be assessed continuously with a pulse oximeter during major seizures and needs O2 support to avoid hypoxia. He must have an oxygen tank available at all times.
-Attending to him during seizures is a skilled need. His rescue medications have lost efficacy previously, so we have to rotate them on a periodic basis. What works for one seizure, will not always work for the next. It takes someone with medical training to be able to assess when to use them, how much to use and which drug to use. Someone who works with Cole on a daily basis would have this knowledge. He receives rescue medication through 4 different routes (rectal suppository, oral, intranasal, via g tube) to understand the procedures attached to which route is appropriate at what time is also a skilled need.
-He has a g-tube which he uses daily. He also can receive some rescue medications through this, so it requires monitoring and assessment. He also needs to have supplies available such as syringes, extensions, pill crusher, medicine cups and water for his g tube.
-Cole has sensory issues and will get overstimulated easily. Excitement, noise, patterns, textures, light, temperature and other things are triggers for his seizures.
-His overstimulation issues need to be considered during transportation. He does not do well when traveling, so the least amount of time on the bus would be preferred. Passing cars, light coming through the window, shadows from trees, all of these things can be triggers for seizures. We have tinted windows and he wears his FL 41 lenses when we are in the car. He also needs adequate heating and air conditioning as he cannot regulate his body temperature appropriately.
-He has special dietary needs.
-Cole has many features of dysautonomia including photosensitvity, temperature sensitivity, elevated heart rate and occasionally excessive thirst. All of these need to be constantly monitored and need intervention with special equipment such as Fl-41 lenses, a cooling vest, thermometer and a heart rate monitor located on his pulse oximeter.
-Cole will most likely need nursing for the rest of his life. Dravet is never going to go away and he will continue to need to be assessed and monitored for seizures, even if he looks like he is doing well on the outside.
-Dravet by nature is always changing and things rarely remain stable for Cole. There is constant adjusting of medications. New seizure types, new triggers, etc. Even though Cole presents as a happy, talkative child he still requires a lot of care and things can change in an instant. He could have a major seizure at anytime, so he is always at risk for losing skills, brain damage, or even death.
-Cole is often immunocompromised and will become ill when others do not. He will miss a lot of school due to illness, so it is important that he has as much opportunity as possible to attend.
-Cole struggles with new people and new places. It overstimulates his brain and it is a trigger for seizures, so to have the chance to have people that he is familiar with in an unfamiliar environment will be helpful for his overstimulation issues and can bring him comfort. Someone who is familiar with him will also be able to know when to remove him from a situation of overstimulation, to allow his nervous system to recover and prevent seizures. This continuum of care will provide Cole and his parents comfort and perpetual feedback on his condition.
___________________________________________________
Heavy to see it all written out like that...and that's just the stuff that needs consideration for school.

However, some really great things happened in the midst of multiple reality checks and bouts of nausea.
*Brian and I went to dinner. By OURSELVES, without having to arrange for someone, teach them every thing and then worry about it all night. It was lovely, except for the whole I-felt-like-I-was-going-to-puke-the-entire-time thing, really...it was lovely besides that. We were going to try for a movie also, but I wasn't up for it. We calculated that it has been a year and a half since we have done dinner & a movie. Before that time, it was a year. Yikes! Having the weekends free if we want them has been kind of overwhelming. Date? What's a date? I guess we're going to find out ;)
*Took Cole swimming 3 times. He did awesome.
*Still no major tonic-clonics! Huh? Grateful...but huh?
*I went to a fabulous girl's only pajama party. It was spectacular, including the atmosphere and company.

So, in the midst of all of the crazy new there has also been good new...and some of the same old, same old.

We are a circus. Never boring.

IEP Warrior

Imagine an army coming through the gates. Returning home after a long, tiring stint at war. Some battles were lost, but others were won. The soldiers are crying "Victory! Victory!" as they run into the arms of their loved ones, celebrating with family, friends and even strangers. The war is still happening, but major advancements have been made and the end is in sight.

This is kind of how I feel.

I have been doing the work of an entire army (or at least it feels like it) when it comes to getting Cole a solid education and therapies. I left the Special Needs Preschool building for the county last week wanting to grab anyone I could and just hug them, screaming, "I did it!". Fortunately for the unsuspecting strangers out there, no one was in the parking lot. So I just got in my car and drove home to pick up Cole and Brian so we could go to the pediatrician. Bummer.

The months and months (well, technically a year) of preparing to get Cole into pre-school and have a proper IEP has taken its toll on me. Emotionally and probably physically. I understand how important it is for him to get the right support at school to even give him a chance at a proper education. It is one of the main reasons that we made the move East.

I've got document after document. Letters, therapy notes, psychologist evals, medical records, and other mumbo jumbo that says my son needs a full time nurse, he needs special education, he needs this, he needs that. After all of the hullaballoo that we went through last time, this particular course of testing and meetings have made me go in with the utmost preparedness, ready to draw my guns and get them blazing in seconds if I came up against resistance. Last time I was prepared, but was not even given the chance to speak. I knew I could not be silenced again. Fortunately, I did not have to put up much of a fight this time around. I assembled enough information (or perhaps overwhelmed the committee with so much information) that they did not put up much dispute. Now, I didn't get everything that I wanted, but I was willing to take what I could get. It is leaps and bounds ahead of where we would have been if we had stayed where we were.

Cole will be going to pre-school 5 days a week, starting in September. He would have only had 2 or 3 days a week in UT (IF we could have gotten him in). He will be there for 3 hours a day, and have transportation by bus. The school is only 3 blocks away! There are considerations built in for his light and temperature sensitivities. His behavioral issues. Communication goals. Participation and attention goals. I am very pleased with the outcome. He'll have Physical Therapy and Occupational Therapy (not enough, and no Speech...but I'll take it). The entire meeting, the committee took my suggestions and changed the IEP accordingly.

HUGE battle won: he will be there with a full time nurse, devoted specifically to him and his needs. I still have to go to a Medical Review Board to get our private duty nurses that we have at home able to come to school with him, but the county nurse and the director said that I am more than prepared. They feel that the board will grant this to me for continuum of care. They were kind of surprised to find out that I had already learned about the battle that was going to have to take place and that I was ready for it. See, normally a kid who needs nursing at school has to have a nurse from an agency that has a contract with the district. The have only rarely let in nurses from another agency. Otherwise, the school has to pay Medicaid for the hours, and a huge billing mess ensues. So, I see their point. However, my child is not cut and dried. I need him to be with nurses for an entire day that are familiar with him and all of his seizure types. All of his different rescue meds, which ones to give for which type of seizure. When to give them. To have one nurse for a couple of hours, then go to school for 3 hours with another nurse, who I can't really talk to (because they would be employed by the school), and then come back to another...just wouldn't work. So, HUGE victory on the horizon for me with nursing. Remember this? You might understand why I wanted to hug complete strangers. I was so complimentary to all of the committee members. I let them know that I have been around the block so I could compare..and they did an awesome job!

Another huge battle: The didn't even question the dog. Taking a service dog into school can prove to be a real challenge for a lot of people. When they heard how trained our new friend is going to be, they just put it into the IEP and moved on. I'm certain that this had something to do with it. Thank goodness for pioneers! We won't have those issues, since there will always be a nurse there to act as a handler and 4 Paws provides all of the proper certifications. Still, I'm sure it had something to do with the immediate acceptance that we were going to bring a service dog into school. We'll have to wait and see how it really goes in November, but I got a flat out, "No" last time.

There is more fighting ahead, more battles to be won...but the opposition is not as vicious this time around. My heart carries many battle scars, but it is very full today knowing that I have done something to help better Cole's life.

The Short Bus

When a woman finds out that she is pregnant, there is almost a primal instinct where they will take themselves on the journey of this unborn child's life in a few minutes.

Where will they go to school?
What will they be when they grow up?
Will they be happy?
and so on.
Hopes and dreams for this child abound,
including having lots of friends
daydreams of the first time you get to introduce them to Mickey Mouse
what kind of clothes that you can dress them up in
watching their expression the first time they feel grass or sand on their feet
thoughts about Christmas, Halloween, and other holidays.

They will take themselves mentally through a progression of infancy, through childhood, high school graduation, college, marriage, grandchildren and success. We all hope and dream for success for our children. Dreaming about picnics and birthdays and family vacations are totally normal. Every parent has aspirations for their child.

When a mother finds out that her child is not going to necessarily fulfill all of the dreams that she has for them, she must come up with new dreams. New hopes, new wishes.

In between insurance, oxygen fiasco's, supply company errors, Medicaid messing up our new number, bills, mountains of laundry (Cole is back in diabetes insipidous mode...he has literally 'marked' every surface in the house, including my king size down comforter, twice), seizures and other stuff...we got incredible news this week.

I am not your average epileptic. Honor student, multiple college degrees, had friends, have held multiple prestigious jobs, I've been the exception to the rule. I have never needed any type of special assistance, especially when it comes to education. I never thought that the day would come where I wanted, hoped and dreamed for the short bus to come to my house.

Most of you know a little about the struggles that we had with our former school district. See here for a brief refresher. They said that Cole did not have a disability, having Dravet Syndrome would not affect his education and that he did not need an Individualized Education Plan. The true Readers Digest version...there is so much more to it. I even have a post in my archives that I never published going on and on about how the decision of one person can affect a child's entire life. Well, Wednesday things came full circle.

Cole had a rough night, which he has every night this last week since the med change and the addition of the barometric pressure issue from the thunderstorms. I knew that we had his eligibility meeting at 11:20. He did not go to sleep until after 1 am, so I just let him continue sleeping and got myself ready. If you wake Cole up, he has more seizures. His brain responds much better to a natural process of waking up. He's been finally waking around 10, but here we were at 10:30 and still no movement. I lightly touched him, etc...nada. Well, long story short, we were late. I ran in there probably looking like death warmed over and the committee assured me that we could have done this on the phone. No way...I want to hear it for myself, in person.

All five committee members (two of which have PhD's the other three Masters) solidly agreed that Cole needs services and a structured IEP. They thoroughly explained that he had a regressive disorder and mentioned all of the things that I was concerned about. No one even took in to consideration how I felt in the old district. He begins school in September! What a moment for me. They were just doing their job, but I sat there doing a victory lap in my head with Chariots of Fire in the background.

We still have to create the IEP, work out nursing, talk about the dog, etc. but what a feat for us as his parents. We want him to have special education. We dream about an IEP. These are the things that we hope for now, in regards to our son. We know that on average, kids with Dravet plateau at about age 5. Cole is not so average, but we're going to give him every chance we can to help him. I can't wait until that first day that I get to put him on the bus...I will be crying, but not the usual "My baby's going to school" tears; they will be tears of joy.

Please Keep Hands And Feet Inside The Car At All Times....Thank You, And Have A Nice Ride.

Up and down, around and around...this week has been a ride. Daring, sometimes nauseating and even thrilling.

We have come so far since our move three months ago. Some things have gotten better, others worse, but over all I think our attitudes have had the biggest change. We have always tried to span the gulf between realistic and positive and slowly over time we have developed one of the strangest senses of humor out there. Thing is, I know plenty of other Dravet parents who come with the exact same brand of humor and speak the same language. Thank goodness for them!

I still can't believe that we went to the beach last week. It seems like I am telling anyone who will listen about it. Yes, it didn't turn out great...but we did it! What an adventure :) We spent part of Memorial Day with family and were sad to see Uncle Travis go home. Another part of the day was spent with friends. We actually took Cole to a barbecue. Am I insane? Maybe! He was outside, with a bunch of kids. It was a death-defying drop part of the ride. You know, the part where your stomach feels like it is going to come up through your throat and you are wondering if this was such a good idea after all? Yet, we did it. One of us was constantly following him around as he explored everywhere and really didn't want to interact with the other kids (typical). I'm sure all of these new friends of ours are getting used to me not looking them in the face when they are talking to me because I am trying to track my 3 year old. We stayed longer than I had anticipated before the heat got to him. Even with the cooling vest, hat and the FL-41s it was too much. However, we did it! I keep saying that :) We went full well knowing that he was probably going to have some major seizure activity. On to the next climb, a little valium tablet (loving these) through the g-tube, a cool down in the air conditioned house, and we were on our way again. We went home before every one else, but at least we were there in the first place!

It was another week with rescue meds almost every day. Lots of clusters and another death-defying drop that included oxygen saturation at 28%. Cole stayed really low for over a minute, even on 3 liters and we were about to call 911 for the first time in a long time. I hate it when I am chanting "Breathe! Breathe!" and watching the numbers just hover in a scary place. He finally pulled up to about 70 and we decided not to call. Every time we wonder if this is the one that will take him from us...every time.

We went to the doctor on count this three separate occasions, with four different techs to try and get blood. I still don't have the results, but Cole was such a trooper. His poor little veins have just had it and he is probably dehydrated from his lack of eating even though I have been pushing fluids. I counted over 9 pokes with a lot of digging to try and get a good draw. Two blown veins and now some wicked bruises. We also had to re-do three tests because of poor flow and clotting, so I think he ended up giving around 10 tubes of blood. After the fourth times a charm draw, I felt like he deserved a reward. We have been backing off of the diet again to just try and get him to eat something, anything. SO, I was wild and took him to Chick Fil A. It was about 3:30 in the afternoon and not very busy. I bathed him in hand sanitizer and then trooped him in there to have french fries. I admit, I had a teary episode right there in a fast food restaurant. It was one of those "Is this really happening?" moments. Something so simple as sharing a thing of waffle fries with my toddler brought me to tears. I seriously have had times where I couldn't have imagined it happening. I then got even more crazy and let him try out the play land since it was empty. I know, I'm a rebel! He started jerking as soon as we entered, because it was so new, exciting and colorful. He slowed down a little though and I decided to wait and see what was going to happen. He had SO much fun! I only let him stay for about 10 minutes, but the joy I got from seeing him do regular, little boy things was enough to bring a smile to my face multiple times this week. Finding things to be grateful for this week have been awesome. Even if he's been having lots of seizures, we are sending plenty of shirts to his dog! Even though it seems like they have drawn all of the blood out of his little body, at least he doesn't need a transfusion! It is a conscious effort every day to find little snippets of good amongst the trying times.

Cole went back to the school for some more testing this week and preformed more towards his baseline. He even threw some toys at the therapists head for good measure. It was an excellent demonstration of how he can be so different from day to day. We also learned that Cole is favoring his right side and is trembling on his left. Time for orthotics...already. The psychologist called me back and let me know that she is positive that he is going to qualify for special needs pre-school. Hallelujah! We won't start until Sept, and there are still a few more meetings to get things set, but this is something that we have been waiting to hear for a long time. I know there is a long road ahead to work out nursing, IEP, bringing the dog, etc. I already feel like he has missed so much. He should have been in continuous therapy for the last 7 months, but has missed out because of the move, the old district, and on and on. Just another part of the ride I suppose.

An incredible part of the week had to do with a visit from our new nursing agency. We filled out all of the paperwork and tried to put together a tentative schedule. I was thinking we were going to maybe get 8 hours a day, 5 days a week of help from a personal care attendant (CNA) from our previous conversation. Then, about 240 hours of respite from a nurse for the year. I was absolutely shocked and overwhelmed to find out that Cole qualifies for 12 hours of nursing a day, 7 days a week, plus 720 hours of respite for the year. WHAT?! You're telling me, that I am going to have a nurse here to help me every day? I about peed my pants! I can leave the house! I can go to the store, with or without Cole! We can go to all three hours of church! I feel like I've just won the Golden Ticket! Can you tell that we are kind of excited about this prospect? We can go on a DATE, maybe I can go to see a movie for the first time in over a year! The agency I chose has been great to work with and they have already gotten everything in to place. Now I just have to hurry up and wait for our Medicaid number. They have 45 days to get it to me and I guess I have a few weeks left of waiting before I can call someone to harass them. As soon as we get the number, we can start interviewing nurses. I will get a core staff of three nurses that can all cover for each other, learn everything about Cole and be here on a consistent basis. Right now, it looks like someone will be here Mon-Fri from 11:00 am to 7:00 pm. We will also have night nursing 3 nights a week. I can not even BEGIN to explain what this means to us. Brian and I have not slept in the same room on a consistent basis since Sept 2009, when we found Cole face down in his crib seizing. Tues, Fri and Sat nights I will have someone who is being paid to sit up and listen to my son breathe. Oh, the emotions are hard to describe. I can also request extra hours for respite. It's kind of a pinch me moment, I'm almost afraid to believe that it is really happening. I keep on thinking, "Some thing is going to happen. They are going to call me back and tell me that they scored him wrong, this isn't covered." I guess I'll just have to wait out this loop de loop.

So, does this mean that I am off of the hook now? I can gallivant about and become a lady who lunches? Um, no. There are 24 hours in a day and Cole requires care every single one of those hours. I even worry about him in my sleep. Just because these people are nurses, does not mean that they will have my mothers intuition. It will make me end up being a better mother over all because I will have time to clean the house, cook dinner, do laundry, and all of the other things I have been neglecting, that stress me out all of the time. I will have more time to focus on Cole and doing fun things when it is just the two of us because I can take care of the not-so-fun things while someone else is expertly watching him in the next room.

Cole has been picking up so many new things since the addition of depakote. His memory is getting better and it seems that he is more aware of his body. He pedaled a tricycle for the first time in his life this week. He has never had the coordination for it before and has always scooted it around with his feet. We thought, why not see if potty training will be different with the depakote? So, I gave it a shot and he went by himself, without prompts. He actually could understand his body enough that he could make it through the whole process! This deserved another celebration, so we took him to Red Robin. I knew they had balloons and it was a place that we used to take him before the diet and overstimulation problems. He, of course, went crazy. It was too loud, there was sun coming through the windows, we had to wait while sitting down for our food. However, it was a big moment for us as a little family and in the end Cole ate more there than he has eaten almost all week. Go figure! We even took him to the mall on another night. Horrible decision, he totally melted down, but he didn't have a big seizure! Progress.

With all of the adventures this week, I got to end on a high note. I got to spend some quality girl time with another Dravet mom who lives about 20 minutes away and go out, just the two of us. You should have seen us! We were just kind of staring at each other wondering what to do next. We don't even remember what it is like to be social :) We had a great time though with some great food. We came home early, but who cares? It was so nice to not have to have a plan, be prepared for an emergency, and just wander aimlessly around some shops. It is so wonderful to be with someone who speaks my language. I love all of my other friends, but the instant bond and connection I feel with these other women is something that I can't explain. There are some of them who I have never met in person, but would probably turn to in an emergency over someone that I have known for years. We're making it at least a once a month tradition and I can't wait to do it again! Wow, this is getting long-winded :)

I must say that one of the hardest things to adjust to during this move was leaving my support system. My friends (even though we rarely saw each other), my family, our doctors, and my neighbors. I feel little by little we are starting to get the opportunity to invite other people to step on to this wild ride of ours and come along, even if it is just for a few hours. We just have to go over the safety instructions, remind them to fasten their seat belts, hang on tight and then get ready for the thrill of a lifetime.

Ebb and Flow

Just like the waves, change is constant. In and out, good days and bad days.

In exchange for our great weekend, we have been rewarded with a couple of tough days.

Cole is still not eating very much. I'm pushing fluids through his tube, so he is hydrated, but I'm wondering how much longer we can hold out, waiting for him to decide that he wants food again.

After all of that stress about, "How am I supposed to send seizure shirts to the dog if he isn't having big seizures?"; I got two in 48 hours. Lucky. I should be careful what I wish for! I actually said, "This is great!" when he started seizing. Oy! I have issues. Now if I could only make it to Fed Ex within 24 hours :)

Yesterday we finally had that pre-school testing we have been waiting for since we arrived. Cole performed like a champ...he was perfectly charming, social and carrying on a full conversation. This kid is going to be the demise of me. How can he turn on the "I'm perfect, I don't have a disability" switch when I need him to show his true colors most? Why couldn't he have acted like he did when the Medicaid Waiver people were here? Oh, I'll never know. All in all, we might have to go through the same thing here that we did in Utah. His scores are just barely borderline. They are not sure if he will qualify. Well, that is because you caught him on a good day, on a new medication. Tomorrow will be different. Next week will be different, and so on. Now we just hurry up and wait for their decision. At least the testing staff here are nice, huge plus!

Last night I had a little get-together and all of the new people sent Cole into clusters. We tried out the Valium by g tube and it worked great! Walking, talking, just dandy. I'm sure feeling warm and fuzzy as compared to dizzy and weird is a plus in any one's book! I was so behind in getting things together. Brian's train got stuck on the track, sending him home later than usual. Cole also decided to seize Tues night, canceling my plans for prep, due to me having to watch him stumble around in a post ictal haze. Then, Wed morning, we were at the school testing, until just an hour or so before people were supposed to arrive. Hey, this is our life! My cupcakes got ruined, I was still running around making food and the table was not even set when people started coming in; but I've just learned to roll with it. In my previous life, I would have been so high strung about everything going perfect, that I wouldn't have enjoyed myself. Believe me, there are worse things in life than serving food that doesn't look straight out of a magazine shoot! Or having your kitchen be cluttered. As long as it tastes good and eventually is set out, that is all you need to worry about. It was great for me to have a conversation with adult women. I have really missed my friends, so it is great to finally be making some new ones.

Hopefully, Cole can have another great weekend. His favorite Uncle is coming into town for a couple of days. Seeing him in person is going to be much more exciting than talking to him on the phone at least twice a day (which he does every day). We'll probably take some risks this weekend to play with him. Let's just hope that Cole's brain decides to cooperate. If it doesn't, then we'll roll with that too.

Back To School (or Normal Part II)

So, I wrote the majority of the last post weeks ago. Had no idea how things would be once we started "the test".

Funny thing, here I am, sitting in a small, empty room at the school. I thought that only Cole was the one going back to school? The lovely laws that state teachers and aides can not give rescue meds are good...for them. Okay, I get protecting the employees; who's protecting the kids? They informed me that if Cole has a seizure, all they can do is call 911. That means 10 min with no rescue meds. Cole will go into status (seizure that you can't stop) for sure if he seizes for 10 min without intervention. His major seizures are still over 10 minutes when we give the meds immediately! We have learned through a lot of practice, that the longer we wait for intervention, the longer the seizure. SO, after hearing how sensitive to stimulation he is, they suggested I stay on campus while he is here. So here I sit, in another room, for 3 hours a day. If Cole is going to get meds on time, it has to be from me. Didn't expect this one! We've only been doing this for three days and already I am going crazy ;)

Here's the kicker. Cole is behaving. He is polite. He is proving just how "normal" he can be. He is adorable. Heard that one before! ;) Basically, he is making me look like an overprotective idiot. This child has had more stimulation in the last week than he has in months. Still, no major seizure. What is going on? I mean, I'm happy...but confused.

To paraphrase one of my good friends:
I hate how in our lives (with kids who have special needs) we are always waiting for the other shoe to drop. We can never get comfortable. We can celebrate the small stuff, but are always looking around the corner, waiting for the beast to rear its ugly head again...because we know from experience that it will.

I guess that I really am the one that is getting schooled this week. Always expect the unexpected. I thought that I had learned that lesson.

Normal

Oh the joys and sorrows of having a child that looks and acts "normal" the majority of the time...

A couple of weeks ago, Cole had his evaluation for pre-school. He turns three in January and the services from Early Intervention end at that time. I brought an advocate with me since the pre-evaluation meeting had the underlying message of, "he won't qualify". This has been a long road for us, teaching him skills (including talking) and watching him progress with hard work. Apparently I worked too hard. All of the effort everyday bouncing on yoga balls, doing puzzles, reading books and other 'normal' activities have made Cole 'normal' according to the school district. Um, did you know that a few months ago, he could not sit still for a single book? 10 months ago, he couldn't talk, let alone say, 'How are you doing?" and shake your hand. Did you know that Cole could not match or even do simple puzzles until about 4 weeks ago. Because I worked with him every day! So, now, he can do them. It could change tomorrow. A regular pre-school will not take Cole because of his seizures. Remember that the window to maximize cognition for Dravet kids is small. They usually plateau around age 4 or 5. Kindergarten is too late to start school. I can't afford a private, special-needs pre-school. It's around $3,000 a month. So, this was a BIG day. I had been preparing for weeks.

Cole was his usual, charming self in a room full of new ladies. He wanted their attention, (duh) so he was more than happy to play games with them and answer questions. Even though he had a poor attention span and scored in the 20th percentile on two tests, he's just so cute and polite!! He doesn't need special education! He scored in the 4th percentile for adaptive skills. No, Cole doesn't make small purchases. No, Cole does not dress himself. Not a lot of three year olds do. BUT he also does not know not to touch a hot stove or put a fork in an electrical outlet. He doesn't know how to stay on the sidewalk or to pick up trash at the playground. He does not know his ABC's, can not count to 20 (or 3), can not tell me if he's angry or hungry, cut food, or stay with a single activity for 5 minutes without distraction. He can not use scissors, catch a ball, he can not calm himself down, etc etc etc etc etc etc. Why do you think he scored in the 4%? The administrator said that because he was in a new environment, his scores were lower than they could have been. She has every belief that he would have tested in the "normal" range if we had done these tests at home. How do you go from 4% to normal just by changing the environment? She then said that he scored so poorly on the adaptive because of the things that he was not allowed to do, so that made it hard to score. Um, do you want me to make him have seizures? He can not do some of the things the test was asking, because "allowing" it will result in a seizure. A few things were like that, such as going to the park and playing on playground equipment. She stated that special education would not change him. Cole will have continue to have seizures and pre-school won't change that. Yes, yes I understand that. I'm not looking for you to cure him, I want you to teach him!

I was getting pretty upset by this time. The nurse then started treating me like I had no idea what I was doing and asked to "tell me everything" but then really didn't want so much information. I started to tell her about the diet and she just moved on. I know how to keep my cool, and did so while I was in the room. I didn't mention that I used to attend IEP meetings at least once a month for my job. I know all about them. They had made up their minds. Cole was "too good". They said if he has a dramatic loss of skills, they would re-evaluate him. Does anyone believe in prevention? If he loses something, it's probably not coming back.

I convinced the school district to let us have a "test". Cole is going to go to pre-school for two full weeks, and we'll see if anything changes. I know they are just doing this because I had someone from the EAU there, who is a retired special educator. These people have made up their minds that Cole does not need services. In the two hours he was with them, he had just a handful of absence seizures. Not even noticeable unless you were looking him in the face. We face this issue almost every day. He walks and talks, looks normal, what's wrong with him? Do I wish that Cole was in a wheelchair, or couldn't talk....NO! I hate to say it, but it sure would make this fight easier. Epilepsy is so misunderstood. Our district is new, since they split from the larger district only a year ago. They do not have an "in between" program yet. Nothing in the middle from severe special needs to regular mainstream school. "Give us five years", they said! Two districts over, a friend of ours is getting a one-on-one aide for pre-school. Moving has never looked so good.

"He is adorable", was their parting comment.

I wish they could have seen the seizure when we got home. 2 hours outside of the house, totally expected it. We got it on video to show the dog trainers. I wonder if the school district would consider him to have "special needs" if this happened when we were at the eval. So here we are, in that awkward situation again (like EEGs) where we hope he has seizures. So strange. Kind of twisted. I hope he shows his true colors.

Off my soapbox. Whew!