Celebrities

We finally got to meet our friend Evan and his dog, Mindy! They just got home from 4 Paws for Ability. You might recognize Evan from his appearances on Good Morning America, stories in the Washington Post and other publicity based on his book "My Seizure Dog".

I have actually been friend's with Evan's mom for a long time, even before we moved to D.C. We are so happy for Evan and the impact that he has made. Slugger really enjoyed getting to play with Mindy and show her his home turf.We actually met Mindy when she was just a ball of fluff, on the day that she and her brother came to 4 Paws for Ability, while we were there getting Slugger. It was great to see her all grown up and with her special boy. Cole really enjoyed getting to spend time with Evan and showing him all of his toys. We can't wait to see Evan and Mindy again soon!Mindy's television debut was last week on FOX News, you can see it HERE! I teased Evan and told him that we were so lucky to have celebrities at our house ;)

Brotherly Love

We love it when we have a chance to visit Slugger's siblings. Lucky for us, two of them live in the D.C. Metro area. We stopped by and saw his sister, Samba after a doctor's appointment. They really enjoyed running around and Samba's favorite-wrestling!It was hard to get a picture, they were moving so fast! I think it is great that these two still recognize each other. They act completely different than if they were with another dog. Even when Sid's family member came to our house, without him, Slugger acted exactly as he does when he is with Samba or Shaggy. He could totally smell his brother and was really disappointed when he could not find him. He moped for an entire day after his scent left.
We love Samba and her family. Her mom even came all of the way to our house to help me clean. She knew that this summer has been hard and I have been backsliding on housekeeping ;) I really appreciate friends who can read between the lines and who sacrifice their time and energy to serve us.

I can't believe that the S Litter is going to be 2 soon. Time for a party!

Slugger's Story

I first heard about seizure alert dogs from my grandmother, who had seen a program on television about them. It turned out that they were really expensive and agencies only gave them to adults who had lots of seizures. My epilepsy was fairly controlled at the time. We never really talked about it again.

Fast forward-I went to college and this same grandmother mentioned that I should get a service dog to live with me. At this point, the internet was up and running so I did a search. There was not a lot of information out there. The more I thought about it though, why would I want a dog with me all of the time? I was having a hard enough time talking about my seizure disorder to potential friends and prospects. Taking a dog with me everywhere was like pasting a sign on my forehead that said, "She's different!" At this point in my life I was trying to prove my independence and fit in, not stand out.

Fast forward, again-I became a social worker and decided that I wanted to apply for a service dog that I could take to work with me, to help my patients. As a bonus it could live with me, and maybe alert to seizures. I sent in my application and was told the waiting list was 5-7 years.

Time moved on and things changed. I never reached the top of the waiting list since I was rarely having seizures and there were others that "had a greater need". I understood that, but wasn't that what a waiting list was all about? I resigned myself to the fact that I would probably never be able to get a dog to help people I worked with and to possibly help me.

Cole came along and I started thinking about service dogs before we even got his Dravet diagnosis. I called 6 different agencies, and not one of them would place a seizure alert dog with a child under 5 years old. I was so frustrated. I wasn't sure if Cole was going to make it to age 5 (sad, but true). I went to the Dravet conference and saw multiple service dogs there. One person that I made friends with had just finished fundraising for her son, who was the same age as Cole, through 4 Paws for Ability. I had seen their website during my search, but they were in Ohio. I lived in Utah. I had not really delved into their mission. She explained to me about the fundraising and that they could place a dog with my son. That was all I needed.

I came home from that conference with an overwhelmed feeling, having just caught a glimpse of my future. I did, however, have a fresh resolve to get the very best for my son. I single handedly organized a fundraiser and I was not going to look back. To learn more about that part of our story, go back to the fall of 2010 in our archives.

We raised our money, got approved and had to hurry up and wait. Turns out that we had to wait longer than anticipated, but Slugger was worth every tear shed and every day that I thought, "I could really use that dog right about now!"

We finally got to meet our furry family member in October 2011 at 4 Paws for Ability. There is a lot of emotion that I still feel, 9 months later when I think of that day and this video.

We gained many friends through our 4 Paws journey and had a wonderful, tiring time at training. If you want to read about our time at training, click here

Life with Slugger has not been easy. It is really like bringing another baby into the family-one that sheds! All of that training, all of those commands have now become second nature. There are still bumps in the road, but he truly is the perfect dog for Cole. He is so patient and has the perfect personality to fit in with us.

To those of you who are thinking about getting a service dog, I say-Do it. It will not be easy, but the rewards that you get are a totally worth it. Slugger has brought so much to our family.
So even though he does dumb things sometimes and there are days when I wish that I could shave him, he is my baby's best friend and guardian angel here on earth. I would not have it any other way.

National Walk For Epilepsy 2012

We have been so busy lately with lots going on. House full of company, Jill's House, the walk, spring break, a road trip...I think I need a vacation! :)

We are so glad that we got to attend this year's National Walk for Epilepsy. There were over 4,000 people there! It was hard to get very good pictures of the crowd, because we had to keep moving. I have never personally been to such a large event based around advocacy. It was moving and I felt myself tearing up multiple times. An absolute sea of people, all with one cause, to bring more awareness.I am grateful that Cole is doing better with handling being outside and overstimulation. We could have never done this last year. We met most of Team Dravet before and walked over to the mall. You can't really see our team t-shirts, they say:

Team Dravet

Brought together by chance. Staying together for a cause.

Even though we live here, we do not go to the mall very often, so it was wonderful to be able to see it in all of its glory-construction included :)

Here is Team Dravet, 2012. We had a great turn out this year and hope to have even more next year! It was hard to stay together, but nice to see purple hats amongst the crowd and spot "family".
Speaking of family, all of Brian's siblings were together for this. Something that does not happen very often. We were so touched that they came to be a part of the walk with us.
We got to see part of another family of ours- 4 Paws for Ability! We walked with dogs Bo and, Slugger's sister, Samba. I am sure there were others there! It was great to see so many service dogs in one spot. I must say though, Slugger was one of the most well behaved dogs I encountered the entire weekend. I was a proud mama!

Showing our hometown pride!

It was a powerful thing to think about each person's story and why they were there.
A lot of people had signs and banners. This was my favorite of the day, from Team Epilepsyadvocate.com. It made me really emotional.
I know that Cole will never be society's definition of normal, but I have to completely prove myself every day. In another time, I would not have been allowed to live independently, marry or raise a family. I was glad to have a team that was there to walk for me too.
Cole gave up about 3/4 of the way through. Even though we gave him meds before it started, there were a lot of people and lots of excitement. Plus, no port-a-potties, seriously, for thousands of people they should have considered that all of the museums would still be closed! :) We did not make it all the way to the finish line. The entire walk was over 2 miles, but we did participate in the majority of it. We finished by a vintage carousel that has been on the mall since the 40's. It was good way for Cole to break away from the crowd.
All in all, it was a great day and we are so glad that it did not rain. Thanks to every one who came! Can't wait for next year!

Done?

Blogging has been hit and miss for the last few months. Due that my readership is largely made of special needs moms and the random relative, I am sure that YOU understand...I am just not sure that I do!

I have been in a random state of flux for the last few weeks. For example, incredible joy at the good run we had with beating the tonic-clonic monster into submission and then flowing towards the depression of the harsh realization/reminder that Dravet is never going away. You really would think I would be used to this by now.

Even my attempt at humor with the OCD organization of my purse fell flat. I just can't seem to be witty lately.

The funk can't really be pinned onto a single event. It is just there. Bleh.

My drifting has led to sudden spurts of creativity, but nothing seems finished. I have a few posts in my blog attic (drafts) that are no where near publishing and that birthday present I was going to make for my sister just didn't even have the legs to get off of the ground.

However, it has also led to random bouts of cleaning out closets and cupboards, which is awesome, but at the most inopportune times. Like deciding to organize the pantry and my spice cupboard right before a birthday party. Who does that? No one is going to look inside and see if my jar of oregano is expired! I have thrown away bags and bags of broken toys, expired canned food and stained clothing. I can't really say that I am nesting, or spring cleaning. It just happens. My sanity is clearly questionable. Good thing I hang around a dog and a toddler :)

Speaking of birthday parties...Someday, maybe I will be cool enough to try and keep up with my friend, E. Right now, it is futile. Check out her daughter's mermaid party! I used to be the queen of theme parties, hosting and inviting over different friends and having a blast doing it. I admit, I am jealous of her creativity. That spark of mine is gone in this haze of cotton-filled numbness. Replaced with survival tactics.

Even the thought of undertaking a party is exhausting right now, especially when Cole could care less about them. SO-the party to celebrate Cole's four years on earth was extremely simple. The weekend before, we invited two families in the area who were in our class at 4 Paws For Ability and have siblings of Slugger's. We had a great time, even if it was nothing to photograph or blog/brag about. I will say this though, three golden retrievers in my living room, in a wrestling match, is quite a sight. We should have charged admission!

Any event has changed with our new perspective. Holidays are celebrated in minimal ways and there is way less pomp and circumstance than I am used to. On Cole's birthday I took the popcorn machine to his class and was the "cool mom" for five minutes while a group of eager pre-schoolers watched the miracle that is popping corn. That's it. Brian was out of town. Cole can't have cake. He did not even get the concept that the day was (supposed to be) about him. It can sometimes be depressing to the woman who thought she was going to have the coolest birthday parties ever for her kids. That Pintrest file, just sits there full of ideas that I am never really going to put to use in the near future.

However, someday I am going to have the fun parties again. Someday I will have the creative spark to write things that move other parents and make them smile. Someday I am going to deep clean my house on a schedule and not just when I feel like it is getting to the point of contamination possibilities. I still do the necessary stuff every Saturday, but things like washing walls-let's be honest, it just doesn't happen around here. Someday we will have friends. Maybe someday we can go on dinner dates and will read books that have nothing to do with genetics. We just keep telling ourselves that it won't be like this forever.

The other day, I had a "DONE DAY". You know, the one's where you are just done. Done with dealing with the nursing issues, done with insurance, done with trying to make ends meet and coming up far short even after trying to tighten every realm, and on and on. I was done with trying to figure out our next move with medication. Done with trying to be a detective and figure out if Cole was sick or just reaching his seizure threshold. I was done with money-we went without presents for Christmas, birthdays and our anniversary to help pay for Slugger. I was done with fighting for therapies. I have kept being turned down time and time again for Aquatic Physical Therapy, and when I finally got him a spot recently-I realized that I don't have the money to pay for it, even after all of the trying to make things minimal. I think that every mom has days where she is just "done". Whether they have a special needs child or not. Anyone can be "over" something or "done" with it.

I am done with a lot of stuff, but I am not done being a mom. I am not done fighting, I just want to take a hiatus. I'll snap back, just like I always do. I really don't have much choice there :) Am I the only one that has ever wished to vacate their life for just a few days? Probably not. A big portion is my attitude. Nothing is going to be simple, ever. I can not change that. I can change the way I think about it though and have some great examples to look to. I am not done being the primary caregiver for my child. I am lucky that I get to keep him at home. Some people do not have that option. I am not done with a lot of things. I can look at Cole and find strength when I did not think I had any left. He had an hour non-convulsive status seizure on Friday and stayed post-ictal for over 3 hours, continuing to have myoclonics and dropping O2 sats. Really, I had planned on taking an easy day since Brian had been out of town all week and I had been up all night for multiple nights, listening for any signs of seizure. Cole had to do his thing and make it interesting, thus ruining my plans for a relaxed couple of hours while he was at school. He is worth it though. I made it, and he made it too. Apparently, he is not done letting me know that he is the one who rules my life...and that is okay, because I am certain that I will never be "done" with him.

How To Take Your Service Dog To Disney

Taking Slugger with us to Disney proved to be a challenge but a real blessing. We are so grateful that he came to us at this time to help us have a magical Christmas. Here are some tips if you are thinking about taking your service dog to Disney.*Here is a list of the rides that your service dog can go on, surprisingly they can ride almost all of the attractions. Also included on the list, are areas that are designated for potty breaks (they even have signs). However, you can use any grass area (all are fenced off), you just have to find the gate to open. I printed off this list and it helped me when I could not find the signs. There were a couple of times that we had to be creative, but most of the time we were able to find a place for Slugger.

On King Triton's Carousel

*The "cast members" will know how to accommodate your dog. They have to ride laying down at your feet for most rides. If you are planning on going on a ride that is on the list, which your dog can not go on, you will need to have someone with you that is able to hold your dog while you are on the ride. The Disney staff can not watch your dog for you. We did this on Soarin' Over California, which Cole really loved and went on 3 times.*Know that you are going to get a lot of attention directed towards you with your dog. Slugger is going to show up in a lot of peoples pictures. It was like the paparazzi when they recognized that he was actually riding the rides. People will ask to pet your dog, some won't even ask. It REALLY helped us to have this vest. We have "Seizure Alert Service Dog" and "Working Dog Do Not Pet" patches on both sides. Many parents would see them and tell their children that the dog was working so they could not touch it. Also, it saved a lot of questions of "Why do you have a dog in Disneyland?" This vest is lightweight and it was easy for Slugger to wear all day long. You are still going to have the random comments and the assumption that your child is blind. That happens in a regular public situation anyway. You can print out cards to hand out to people that have more detailed questions, explaining about service dogs and your child's condition. It helps to not get stuck in a 20 minute conversation when you are trying to focus on your child.

*For the record, Slugger's favorite ride was It's A Small World. He was really interested in all of the little people :) He struggled with what to do on the first few rides and I actually had to lift him in to the first one, but by the end he was working like a pro. He immediately knew what to do. Hop in, lay down, stay still. I was so proud of him-especially one night when it was shoulder to shoulder on Main street trying to get out of the park and I was certain that he was going to get trampled because he was so low to the ground and it was dark. He weaved in and out like a champ and I kept praising him the entire time! I am so glad that we practiced in crowded public places before we left.

*Disney has a kennel where you can leave your dog if you feel like they are slowing you down, or they are getting tired. You just need to bring their shot records. It costs to leave them there, but if you are going for more than a couple of days it might be nice to give them a break. I know that Slugger was exhausted by the end of the day. He had probably never walked that much in his life, even with all of our breaks.*You WILL find that parents will come up to you and want to know how they can get a service dog for their child. We gave out 4 Paws for Ability information 5 separate times to parents who had desperate looks in their eyes and a glimmer of hope that maybe someday their child could come to Disneyland with their dog. It was very satisfying to have those kinds of conversations and spread awareness. We never even dreamed it was possible for us before Slugger. We were grateful to be proving ourselves wrong. There were times when I could tell that Cole was getting overstimulated and he would just crawl under the table and lay on Slugger. It made me so grateful that we brought him with us the entire time.

*You will get random people who bring their kids up to play with your dog, or others who make snide remarks. Just remember that you are always an ambassador for other people who have service animals. I think that my favorite comment was, "I think that is the saddest thing I have ever seen! I feel so bad for that dog!" Uh, did you notice that he is at Disneyland? Plus, this dog LOVES his job. His life is not one of sadness! It made me chuckle. We actually saw another dog there who was barking and jumping up on their owner, while they were frantically trying to keep it quiet and tell it to get down. Slugger behaved like a professional the entire time.

*Make sure that you have bottled water, enough treats and everything else you need when your dog is in public. We also carried a serving of food in our backpack since we did not know when we were going to be leaving the park. We just fed him when we started eating and then he rested while we were having our meal.

We are really glad that Slugger was able to come with us and think that with his help, we might even try something like this again!

*I wrote about how to take your special needs child to Disney, here,

Our Christmas Miracle

Has it really been that long since I posted something decent?

It's just a testament to how darn crazy things have been around here.

Bringing Slugger home truly was like bringing another baby into our family. A very long-haired baby. He still does some puppy things, like eating cheeseburgers if they are left unattended and chewing every toy in sight. Just yesterday I wrestled a small plastic dog, two marbles and a little red ball from his jaws. The dog and ball are no more...thank goodness he didn't shred the marbles. Yes, he has appropriate chew toys, he just wants to share the love I guess. It's more like having a brand-new toddler than an infant. I still have to feed him, clean up after him, bathe him, brush him, etc. However, he is mobile, so we have to "baby proof" the entire house. He has tried to get away with things, like any good self-respecting toddler, and needs reminding of the rules. It has been a major headache trying to weed through the nurses and figure out who will make a good handler for Slugger. Looks like I am going to have to start from square one again with some of my shifts. Others, have handled it beautifully. Still, without Slugger we would never have had the opportunity to do the things we have done in the last month. The only thing that has changed is bringing him home...and it has changed our world.

After a year and a half of trying to potty train Cole with every method imaginable-he has finally got it. Was it his teachers, treats, peers, daddy? Nope, it was Slugger.

His language has improved and he is all around more content. He has actually slept in his own bed throughout the night without another adult next to him for the first time in over 2 years. We're still working on it happening every night, but hey-MAJOR improvement. Knowing Slugger is on his bed has helped him to go back to sleep when he inevitably wakes up in the night. We were going to start Clobazam (does this sound familiar), but something told me to wait. So glad I waited...again. Cole has been sick twice since we brought Slugger home, each time for about a week. What can I say, pre-school is a germ factory :) Adding a new med while sick doesn't give you a great idea of how it works.

This time last year, the g-tube was fresh. It has saved my butt more times than I can count. We were still on full fledged keto. So grateful that we are done with that. We didn't go ANYWHERE. Even going to our neighbors for a couple of hours was a huge undertaking. Cole hated Christmas. He ran away and couldn't handle the overstimulation that came with any celebration. We spent the majority of any get-together, no matter how big or small, in another room. This year was completely different.We embarked on a vacation bigger than anything that we have ever attempted before with Cole. It included 6+ hours on an airplane (twice), up to 7 hours at a time in a car and never being in the same place for more than 2 days. Oh, and did I forget to mention that we visited Disneyland? Yep. The nightmare of all overstimulation.

Cole was fine.

You heard me.

In fact, he has gone over three weeks without needing rescue meds to stop a seizure. He has not gone that long since 2009. Our previous record was 17 days.

The only thing that has changed recently is Slugger. No magic med, no intense therapy, no special adjunct anything. Just a dog. A very special, expensive, totally worth it dog. We knew that there was a possibility of a decrease in seizure activity when we first got Slugger. We didn't hang our hats on it though, all kids are different. We are religious people, we believe in angels and prayer and know that we have had help from so many people to get where we are today.We know that Cole is going to continue to have bad times. 'Tis the nature of the beast. Dravet has taught us that we can never get comfortable, because things are always changing. However, the timing of this "good spell" has been fantastic. Cole still doesn't understand the concept of Santa or Christmas. Still can't handle opening presents (it's a myolconic fest). Yet, we had as close to a normal holiday as we ever have. My grandma used to have a sign on her fridge that said, "We don't believe in miracles, we EXPECT them". We have had so many pinch-me moments this holiday. The biggest one I call a miracle, Cole just calls him Sluggie.

Friends In The News

Here is a great piece done by FOX13 in Salt Lake City, Utah, highlighting some of our friends from 4 Paws For Ability! If you keep your eyes open, you can see Slugger making a small cameo in each section with the class picture :)
Part1  
Part 2
 

We Did It!-Graduation, Day 11

It seems going through the posts that I was at Ultimate Fighting Championship Camp or something...not Service Dog Training! I promise, this is not the norm. No one else had issues, I must be super special!

Brian took the Public Access test since I was on the injured roster. He and Slugger passed! The only worry was the food distraction test and Slugger almost gave in to temptation. However, he must have known that he was doing something important and resisted. Hooray!

Later that afternoon we all went back to 4 Paws and filled out the paperwork to take Slugger home with us. We promised to take good care of him. Then we had graduation! It was so crowded and noisy that I was sure Cole was going to have a melt down. Some of the other kids in the class just couldn't handle it.

This was our attempt at trying to get a picture of all of the dogs.Our dear friend Paula drove 4 hours just to be with us on this special day! We have not seen her since the Dravet conference last year and it was so nice to be able to hug each other. She also brought her lovely daughter. She kept Cole entertained during the madness with a new iPad app called "Paint My Wings". We were so grateful to her for coming. That is something that I love about my Dravet family, we truly share each other's victories and sorrows. We may not be able to physically be there in times of need, but I know that they are rooting for us...always! It was so, SO nice of Paula to come and spend time with us.We waited patiently and we were last to graduate! They finally presented Slugger and Cole as a certified working team. We got a fancy certificate and everything!Plus, we got to sign Cole and Slugger's names on the Wall of Fame!There are a lot of lives changed here.We were so sad to say good-bye to the staff at 4 Paws For Ability. There were many tears.

Here is Slugger with his first "Mom". She will always be a part of our family.Along with some special other people who will also be family. If you haven't guessed, we are always willing to adopt.Speaking of family, here are Slugger's litter mates that were in the class. We are so excited that his sister Samba and his brother Shaggy live close to us!If you have ever doubted that this is something you could undertake, I will just say to you-If I can do it, you can do it too! Contact 4 Paws today, or if you have the chance, help someone with their fundraiser. Our lives will be forever changed because of these people and their mission...and by Slugger, of course.

Last Day, and Another One Bites The Dust-Training, Day 10

You can play this in the background and imagine a montage America's Funniest Home Videos style of me falling on my face. Well, actually on my hands.

I went on my first long blind track with Slugger today. I had no idea where Cole and Brian were, just the direction they headed in the beginning. Something that would be more along the lines of a typical life situation. I knew the last place Cole was, but not where he went. Slugger took off like lightning, as usual. We were doing great. I was slowing him down, putting pressure on the Flexi line and we were going more at my pace than him dragging me around like he wants to. He was running so hard though that all of his legs left the ground and he jumped over the line and got hung up in it. I had to stop him (which he didn't like) and untangle the line from in between his legs. After I got him loose, there was slack in the line and he caught the scent again before I was ready. Remember when I said you have to have perfect body position if you are a little whipersnapper like me? Well, my knees were not bent, my heels not dug in and my arms not braced. So-with that incredible force he has, when he snapped into the scent after that slack, it was like being hooked to a race car. He literally pulled me down, and almost got the Flexi out of my hands. I heard the trainer yell to me to just let go, so I did before I was dragged to kingdom come. I landed directly on my hand and heard an audible crunch. After he asked if I was okay, I waved the trainer on and told him that I was certain Slugger would just go and find Cole. So, I rolled around on the ground for a minute and then cowboyed up and walked to where "Super Tracker" had already found the boys. My hand started to swell as we walked back to the car and hurt like the dickens. I put an ice pack on it (I had one in the car already) and we went to get lunch.

I was sure that I had at least broken my pinkie, so everyone at the center convinced me to go in and get it looked at since I was feeling pain up the side of my hand and in my palm. Well, I have a soft-tissue injury aka a really bad sprain. At least my hand is not broken, but I have this nice little ace bandage :)Now I don't want anyone who is getting a tracking dog to be freaked out by all of my random injuries. This is not typical. 1. I am not really the most coordinated person on the planet. 2. I weigh around 110 pounds, Slugger weighs almost 80. 3. My shoulders and arms are not that strong since I do not have enough cartilage around my rotator cuffs. This will not happen to you. Or at least I hope it won't. Seriously, I laughed when it happened. First I sucked in my breath and said/yelled "Aahh!" and then I started to silently giggle. I was glad that Slugger was doing his job. It was me that wasn't ready, not him. I told the trainer, worse things have happened than a broken finger. So, we got to go to the hospital twice this trip...nothing was emergent and we never had to stay. I guess it is just part of taking in the scenery when we travel :)

I can't believe that today was our last day of class. Tomorrow is our big test and then-hopefully-our graduation! I just hope that Slugger passes the food distraction part. Too bad that tracking isn't part of the the test. The trainer said that Slugger is like the kid in Little League that is certain he should be on the Varsity team, and he probably should, but he isn't old enough yet. I am positive that we have a Varsity tracker on our hands. I just have to get used to it.

We talked today about taking our dogs home and continuing our training. Here is Slugger doing lap.After class, Captain Fuzzypants got a bath. Plus a professional blow dry. On the list of must haves when we get home, dog blow dryer :)I am so grateful to the staff at 4 Paws and to anyone who even donated a dollar to make this happen for Cole. Slugger is his perfect match and I am sure that he will prove his worth time and time again. He has already made such a difference in just a few weeks, I can't imagine what it will be like a year from now. Everyone that has made an effort to mold him into the amazing dog that he already is will forever be a part of our little family.

Cole will miss socializing with every adult in sight. He could care less about the other kids, but that is nothing new.It is time though to get back to our routine and our beds. Cole's nap today is still going strong after 2 hours. He is so tired. He keeps saying that he wants to go home. I admit, I also want to...but I want to take all of the amazing people that we have met with us.

Parents Of The Year-Training, Day 9

We are kind of out of our element here. No specific routine. At home, the morning usually goes like this:
Brian wakes up, gets ready for work. Makes Cole's milk, puts it in fridge.
Cole wakes up for the first (or third) time, comes into Niki's bed.
Cole sleeps for another hour, Niki gets ready (if she's lucky).
Cole wakes again, Niki grabs milk gives Cole meds.
Cole watches the show of the day and drinks breakfast.
Niki gets Cole ready for school. Nurse comes, we go to school.
There are slight variations of this routine, but it is usually how we approach morning. Here, all sorts of versions have been happening. We have been waking up earlier, all together. No going back to sleep for anyone. Sometimes I have been giving meds, sometimes Brian. Sometimes I have been getting breakfast, sometimes Brian.

Today, we figured out that we forgot the meds completely. Awesome.

Cole was having a really hard time waking up this morning. We started at 7:00 am, and by 8:30, he still wasn't ready to get up. It seems like all of the kids have hit a wall today. They need routine and this has been anything but. So, in our commotion of trying to get him to wake and get ready, we forgot the morning dose.

He had a rough time at the center and we could not figure out why. Now we know after some process of elimination. Also, watch out grandma's you have been replaced! Cole has adopted a grandmother that is here with another little boy in our class :) I told her to take it as a compliment.Cole had a 12 minute tonic-clonic seizure just after our track at the park. Being outside was enough to just push his brain over the edge.Slugger didn't even have a chance to alert. He was so amped up about tracking and playing the game that he couldn't focus. Then, Cole and I were separated from him for about 15 minutes before the actual seizure, which is in his alert window (we think).We'll have another chance, but we are kicking ourselves about it. At least we know that the medication is helping a little! We wondered about Keppra. Yep, parents of the year...right here.His post-ictal phase was really rough. Without that barrier of Keppra to break through, the rescue meds became super strong. The seizure took Versed and Diastat to break. He was so irritable, it was awful. Lots of screaming, crying and demanding things. "I want this, I want that!" We would give it to him and he would just continue to ask for it.

We got to the mall for our last indoor practice (can't believe it!) and he had kind of mellowed out. We knew that it was not going to last long though, so we asked to go first. Slugger did two short, textbook tracks. We also worked on some obedience, but left early.Good thing. I know my child. I can't always predict what or when he is going to do something, but I knew that he was getting to the end of his rope.Not a moment too soon, we left with him screaming as we headed to the car. The whole way back to the hotel we heard things like, "I want to go home! I don't want to be in my car seat! I want my milk!" over and over and over at a very loud, high pitch. Always fun. Slugger wasn't even really into behavior disruption commands because Cole was just so out of control.

We came back and tried to coax him into taking a nap. That took about a half hour to actually get him in the bed without going ballistic. Once in there though, he crashed hard. After his nap, he was good to go, we went and met up with one of Brian's cousins that lives in the area. You never would have known that Cole had just been through a rotten day. He just cared about the tractors and old farm equipment around the dairy that we visited. Made this farm girl proud!This kid is tough as nails. It makes me feel a little better that he rebounds so well, but still-no awards are in my future.