More About Give Kids The World Village

Here is another great video about Give Kids The World Village. It shows just a tidbit of what we are going to be able to experience on Cole's special Wish Trip.

GKTW hosts children from multiple wish granting organizations worldwide, but Make A Wish is the main organization that sends kids here.  An entire resort specially dedicated to children who have life threatening illnesses, who been granted a special trip of a lifetime.

A whole week with passes to different theme parks, water parks and anything else Cole can dream of.  Even sugar free, dairy free ice cream for breakfast!  I have already made a tentative itinerary based on what we think HE is going to want to do and let me tell you...it is going to be F.U.N.

Rush

My emotions are all over the place.

Cole has been granted a wish from Make A Wish!  Truly, it has been a long journey.

I first applied for Make A Wish when we lived in Utah.  Things were crazy, but my dear friend inspired me.  Her daughter passed away just weeks before they got the news that she could be a Wish Kid.  She told me that she would give anything to take that special trip with her daughter; and I was introduced to Give Kids The World Village.

I had been immersed in the special needs world for a little bit, but this was the first I had heard of the Village.  She told me more about it and I looked it up online when I got home that night.  Her story reminded me that life is fragile, and Cole had just turned the right age for applying, so I filled out the application online.  Give Kids The World Village was so magical.  I wanted to take Cole there.  It was a place where no one is different, and dreams come true.  After a couple of weeks without hearing anything, I called the office.  I was told that they were waiting on paperwork from Cole's doctor.  I never heard back.

We moved shortly afterwards and it was one of the last things from my mind.  I was so busy trying to get everything else into order.  However, when requesting Cole's medical records to take with me to Miami, I found amongst the papers the response from the doctor.  Due to being uneducated about Dravet Syndrome, he personally took away the chance for Cole to receive a wish.  I was livid.  However, I calmed down and realized that everything happens for a reason and it probably was not the best time to travel with Cole any way.  He was so sensitive to outside stimulation at the time and most likely would not have been able to fully appreciate and enjoy a trip.  Hindsight truly is 20/20.  I tucked away the thought of re-applying in our new state, since the chapter that grants the wish is based on where the child lives.

Fast forward.  Time passed, we got Slugger, changed jobs three times, got used to school, etc. etc.  Life was constant chaos.  By this time we have made plenty of friends who have received wishes and a lot of them, from all over the world, go to the Village.  December 2012, the darkest of times, rolled around and I remembered my sweet friend.  Her desire to just have those few days of happiness completely dedicated to having a good time and spending time with her family.  I felt it was time to apply.

My doctor was texting me every day at this point.  I gave her a heads up that she was going to be contacted.  Then crazy stuff started happening.

She spent over an hour on the phone with the foundation.  She filled out tons of paperwork.  Then more paperwork.  SHE made the decision and told the foundation that haste was necessary.  Sometimes it can take up to 18 months to grant a wish.  I didn't mention anything to her about going right away.  SHE asked for rush status.  This is where a wish can be granted within 24 hours if necessary.

When Make A Wish called me and told me that Cole had been granted a wish, and had been placed on rush status...it was delightful and terrifying all at the same time.  Someone who didn't even know us, agreed that things were so bad that there was to be no delay.  I knew that he totally qualified for a wish, and had plenty of friends who had children with the same diagnosis who also got granted wishes.  Everything from going to Justin Beiber concerts, building therapy rooms in their house, meeting The Cake Boss, getting a special expensive sport court in their back yard-lots of wishes, lots of happy memories.  I knew that a wish was possible, but rush status is for kids for whom death is imminent.  Right?  Once again I had to face reality that things truly are harrowing around here.  However, light entered and gratitude overwhelmed me.  Make A Wish has made it possible for our dreams to come true.  For Cole's dreams to come true.

The process has been so smooth and our wish granters are awesome.  One is a big burly guy who has been a volunteer for 10 years.  He said he has only cried once before.  When he read Cole's application, he cried for the second time.

Give Kids The World Village was started when a little girl, Amy, died before her wish to go to Disney World was granted.  The founder, Henry, was actually a POW in Auschwitz and other concentration camps during the Holocaust.  His story of survival is inspiring.  He lost everything, thought he was going to die, but beat the odds.  He also ended up finding his sister who was sent to another camp.  When he started the Village, it was because he knew what it was like to not know if you are going to wake up in the morning.  He wanted to give hope.  Even if it was just for a week.  More than 80% of Make A Wish, Wish Kids, actually survive to adulthood.  Something sparks inside of them and they fight even harder than before. Some sadly, like our beloved Charlotte, do not make it.  Some of them don't even get to experience their wish.  But GKTW is a place of magic, hope and peace.  A resort that is totally dedicated to granting wishes for kids.  We are so honored to become a part of this special family.  The countdown has begun and I have been preparing Cole a little bit every day.  From watching "Shampoo" on the Live Shamu Cam on the internet, to talking about Mickey.  This little boy deserves everything.  Make A Wish is helping us to make it happen.  A whole week dedicated to doing whatever he wants.  No doctors, no therapy, just fun.

Watch this video and be inspired, like I am.  Even though I am having a hard time with Cole's suffering, I see his smile and hear his laugh every day.  I can't wait to hear the constant barrage of giggles when we go on our wish trip.  Thank you, Make A Wish of Mid-Atlantic.  "A Dream Is A Wish Your Heart Makes" and it is our dream to just be together and watch Cole have the time of his life.

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 ;)

Changes

WARNING: SEIZURE VIDEO FOOTAGE

Although this is a short video and this particular seizure was over relatively quick compared to others, this is what I have been watching lately. Cole has been seizing day in and day out for the last 10 days, needing rescue meds every day. He has been having different types of seizures at different times of day, totally confusing the heck out of anyone and everyone. Me included.

This new type seems to be here to stay. I admit, there are some pros to it. However, they are fast, and have no leaders. He stays conscious during the majority of them, and only his facial muscles spasm, though usually more of his face is involved than what is shown in this video. I do appreciate that they seem (for the first time ever) to resolve on their own. He also is making noise for the first time ever! Have to find positives somewhere. They are less than 5 minutes, but can make his speech take a hard hit and he can end up having lots of myoclonics for hours afterwards. OR, he can act like nothing ever happened. Seriously, he had one on Thursday morning and we put him on the bus 20 minutes later. Totally fine for the rest of the day.

Or, he could have one like last night, no facial muscles involved, 30 minutes. Or the myoclonic clusters that literally knock him off of his feet. Man, this Syndrome disgusts me. How am I supposed to help my child when I can not understand what in the heck is going on from day to day...or minute to minute for that matter.

Constantly evolving, constantly changing. I should be seeing some beautiful metaphor in here, but I can't come up with one. You all can give it a shot :) For now, I think that I am going to keep scratching my head and trying to do my best.

Things People Say To Service Dog Handlers

Pardon the title of this video, obviously I did not create it and I don't swear.

I admit, this made me literally laugh out loud more than once!  I think we hear, "They must be training that dog," or "Why is he wearing a muzzle?" every time we go out in public.  We have had someone say almost every single thing in this video, and more, to us in the last six months.  ;)

I think my personal favorite Slugger story comes from when we were at Disney.  A young adult proclaimed, "Look at that dog!  That is the saddest thing I have ever seen.  That is just so awful!"  I wanted to turn to her and say, "This dog LOVES his job and um-did you notice he is at Disneyland?" amongst other things.  I also laugh when people run up and take pictures of Slugger like he is a celebrity, without asking or anything.  It is like the paparazzi when we are at a place when you would not normally see a dog.  I  just laugh and shake it off most of the time.  Sometimes we will actually tell people who are passing by and whispering (why do they all assume that we can't hear them?) that this is indeed a working, fully trained service dog and he is for my little boy.

It is important to educate others about service dogs and we do it on a daily basis.  This, is for fun.  I hope that my fellow service dog handlers get a giggle out of this.

The Best Mothers Day Present

I have been trying for years and years to get Cole to say the alphabet.  I sing the song to him every day.  We watch videos on YouTube.  He has apps on the iPad.  It is not a forced, "must do this" kind of thing anymore, but routine.  I had accepted that he just may never be able to do it, but did not give up hope.  It is a developmental milestone, so we still worked on it.  

Cole gave me a wonderful Mother's Day present this year.  He sang the entire song, unprompted.  Without stuttering.  I was so shocked, that I asked him to do it again and pulled out the phone to video it.  It gave me chills.  I have no idea if this has anything to do with the new dose of Keppra he is on, or if it just finally clicked, like it did with potty training.  He has not even made it past the letter D before.  Regardless, I was thrilled.  It made my eyes water and my heart sing.  For my first Mother's Day, he rolled over for the first time.  That was a few months before his first seizure.  

So, I present to you-my Mother's Day present.  My baby, at four and a half, singing the ABC's for the first time!  Only missing one letter and replacing P for V.  

Easter Dravet Video

Our friend from New Zealand made this video. Cole and Slugger make an appearance near the middle.

Purple Day 2012

We have been celebrating Purple Day for a while around here and I have mentioned it on the blog a time or two before.

This year, we are actually going to attempt to go to The National Walk For Epilepsy. Cole has been doing much better at handling the overstimulation of being outside and if the weather cooperates-we will be there! We are so excited to have many family members who will be joining us for this event.

One of our great friends, from Haley is My Hero, has made a video this year for Purple Day that includes a lot of our Dravet buddies. See if you can spot Cole and Slugger!



Wear purple on March 26th and support people with epilepsy just like Cole, Haley and me!

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
 

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.

Tricks With Treats-Day 6, Continued

Today we learned a little bit more about tricks that Slugger can do. My favorite is "Bang". I'll have to get a video. We all know by now that Slugger is totally motivated by food and treats. So, Halloween is an awesome holiday for him! He got lots of treats today when we were practicing all of his tricks. I am sure that he will be popular with the kids in Cole's pre-school class.

Tonight, after training, we had a Halloween party with all of the staff. Cole and Bug were quite a hit as the Pirate King and Captain Slugger. We practiced for two days with his hat, since he absolutely hates stuff on his head.Can't you just hear him think Seriously, Mom?

He kept it on really well though after all of our practice and they looked so cute! Brian of course, thinks that I am insane for making him wear it. Cole took his costume a little bit too literally and pilfered and plundered this treat bucket.Then he tried to share his treasure with Captain Slugger!Trick Or Treat!They had a small Trunk Or Treat for the kids. This was Cole's very first time ever Trick Or Treating for real. If you remember other Halloweens, it has just been too much for him. We went to two houses his first year, but he couldn't eat anything. The last two years (remember the chicken and the Scuba Diver?) were just too overstimulating. Plus, he can't have candy. Well, he shouldn't have candy. Now that he is off of the diet, this rule is not quite so strict, so Daddy gave him a little piece of the treasure.Here is what Cole thought about Halloween!
Pretty exciting.

There were awesome costumes in our class. So many, that I had to make a slideshow! I even missed a few really good ones. Like Shaggy the dog being Scooby Doo and his boy being "Shaggy". There was also a UPS man and the UPS truck. I will try and get the other kids pictures tomorrow.

Make a video - it's fun, easy and free!
www.onetruemedia.com

It has been SO much fun to be here during a holiday. It gives us an excuse to get together after class and just adds another level of excitement.Happy Howl-oween! From our Favorite Houdini Howler and the peg leg Pirate King (you think that I would have planned it, but I actually bought the costumes a couple of months ago!)

Continuation of Craziness-Training, Day 4

We tracked this morning at a different park. Cole was the first one in the first group. Slugger did excellent, especially for his first time tracking more than one person. I went with Cole and the trainer, so there were actually three people to smell instead of the usual one. The head trainer called it a text book track and compared him to a bloodhound! That's our boy! Here is a video. He hesitated just a moment because we were hiding behind an asphalt machine and the head trainer said that all of the chemicals probably confused him-but just for a second.

Hear him whining? He is so excited to play the game!

The reason that we had to be the first ones in the first group is that Cole and Brian actually spent the day in Cincinnati, about an hour away from here. WHY? Well, Cole got his cast wet, again. This is the second time that we have had to re-cast. The children's hospital would not allow us to go to their orthopedics office, stating liability because we were not one of their patients. Huh? We explained our situation, was all ready to fax over records from our ortho, and they still made us go through the ER. So, I stayed with Slugger after the track and Brian took Cole to Cincinnati.It was a long day for everyone.We were actually surprised that Cole did not have a seizure. Today was his first day outside in a long time, plus it was cold. Then he was at a hospital, one of his least favorite places on earth, and in the car for over 3 hours. We also got something that was similar to alert behavior from Slugger. So, for about a half hour, we watched Cole like a hawk. Still, no seizure. We are back in that weird place again. EEG's and training seizure alert dogs are the only reason I can think of as wanting your child to have a seizure. It is the most ironic, strange feeling ever.

Slugger hates his harness and keeps trying to roll to take it off. It's just something that he is going to have to get used to. In his mind, it should only be used for tracking :) Sorry dude, you have to wear the high heels to impress the boss! We have been telling the kids in Cole's class that it is his uniform, just like a fireman has to wear for his job. Slugger had better get used to it quick, so I can show the other kids!

Slugger and I went to the mall with the rest of our class, the first real public place we have been together. I have taken him around the hotel, but this was our maiden voyage outside of the training center.He did reasonably well. He definitely needed more correction than normal. To the point that the trainer wants him to use a gentle leader in public. I thought he hated his harness, it is nothing compared to the gentle leader. He compares it to the cone of shame. Keeps trying to paw it off, rubbing it against my leg, rubbing it against a chair...he hates it. He sure acts better with it on though. Hopefully, we only have to use it for a couple of months until he starts really getting used to public work.We worked on under, sit, down and heel in the mall. I also took Slugger up and down the stairs (he did AWESOME) and in the elevator. What he did not do so great with was the people. I was constantly hearing, What a pretty dog! Oh, look-a dog! He looks like a Slugger, etc." Slugger loves praise and kept trying to go over to people who were talking to him. He also has this new habit of shoving his head and saying hello into someones private area. Yep, that's MY dog. Sorry ma'am. I was standing in line waiting to pay for some soap and he also happened to decide to go in between someones legs, practically lifting her off the floor as he went through. Yep, he's mine! He jumped up on the built in furniture at the play area and ate food off of the floor. He's a lot like Cole, looks cute and innocent, but can be super sneaky and end up getting in trouble. I have the feeling that we are really going to need to practice in the mall a lot before our public access test, since that is where it is given.

We took Slugger to a restaurant with us tonight, to practice distractions and obedience. I chose a place that had peanuts on the floor-dumb move, Nik! He also did his nice hello to our waitress, great. Overall though, the place smelled like steak, had food on the floor and was really loud. He didn't bark or go ballistic, so I consider it great practice.

We'll keep working hard, hopefully tomorrow is a little more quiet.

Track Attack-Training, Day 3

Today we did our first track with Slugger at a park. He only tracked the trainer, since it was cold and raining outside. After yesterday, and last week at school, I didn't want to push my luck on the first time. Taking Cole out would have possibly landed us into the hospital in the next 48 hours. Not worth it.

We will get plenty of other opportunity to work with Slugger and Cole in the next few days. Tomorrow, we will try again with him.

I actually went on a track with another dog in our class, Slugger's sister. Brian went with Slugger and I watched from the car. It was so fascinating to watch how much Slugger loves it.

Going back to what I said yesterday, the dogs do not realize that their child is in danger or missing. Everything is a game. Obviously, Slugger LOVES this game. He gets super excited and antsy before they let him start, and then he just takes off! He's really good at finding the trainer, because that is the only person he has been tracking since the beginning. Slowly, we will wean him off of the trainer to just Cole by having him hide with her. It made me so grateful that when Cole does slip away, as he is prone to doing, we can find him quick...instead of an hour later when Search and Rescue can show up.

We had an incredible lecture on the logistics of tracking. We learned about things like a scent cone, wind direction affecting scent patterns, temperature of skin cells and a bunch of other things that I never thought would have to occupy space in my memory :)

Here is a video of Slugger's track.
He was SO fast!

We also learned about the commands Jump, Place, Lap and Over. We reviewed heel, and everything else we have learned so far. I have gotten to the point with Slugger that I can drop the leash, walk away and he will stay! Impressive :)Really, he is already fully trained, this training is more for me to learn how to use him and for him to get used to my voice and style. He already knows everything, it's just practice for him.Don't you love his "Spread Eagle"?

Cole is getting more and more comfortable in this environment, so he has no qualms with walking right through the middle of the demonstration or going up to people and asking them to do stuff for him. I can't count how many times he interrupted the trainer or others. Good thing all of these people understand that it is not just because I must be a horrible parent. He really does have a disability that affects his attention span and his understanding of social norms.Like this, in the middle of the room, while the training is trying to teach an important concept, bringing his toys out and calling to everyone to "Look at me! This is my truck!"These two are going to get into so much mischief together. Cole has already decided that he likes to feed Slugger out of a bowl with a spoon, like a baby. Oy!Their bond is getting better. It is hard to have Cole by him in class, because there are WAY too many other cool things going on in Cole's mind. At the hotel though, with nothing else around, he is pretty fascinated with him. Now we just need to get Slugger to want to lay with him, and not me. Silly dog kept trying to get in bed with me last night! We'll have to see what happens tonight :)

News Story - WLWT Cincinnati

Families Meet Service Dogs At Xenia Facility - Health News Story - WLWT Cincinnati
What a day! We even made the local news.

Love that Cole says, "I got treats!"

Love At First Sight

Hi Slugger, I'm Cole. I'm glad to see you!

Too cute.

I had a moment (or three) today where I just welled up. This was one of them. Thank goodness I didn't start, because it would have been the ugly cry.

Untitled from Niki Hyer on Vimeo.

Priceless

The latest installment from the Houdini Howlers

We have also contacted an insider to smuggle in a sheet with "October Class Wants Matches" to the 4 Paws office. It was hanging in the trainer's desk area on Friday morning.

We have got to be wearing them down :)

The Force

The time has come to officially start "begging".
All of the people in Cole's class at 4 Paws for Ability have the opportunity to carry on tradition and beg for their matches until they release the names and pictures of the dogs we will be partnered with. We are encouraged to create songs, poems, pictures, videos...anything to get the Pink Girlz (a secret group of spy dogs) to steal the list of matches. Some people get extremely creative, and it seems that we have a few of those in our class! Here is one of the best-and we are only a few days into this! Yoda (one of the dogs that lives at 4 Paws) is a special member of Pink Girlz, even if he is a boy. This video is directed to him (obviously). If anyone has any great ideas, let me know. We will do anything to get our match early!

Steps Toward A Cure

Hey, sorry we have been lacking in the posting department. I promise to get you updated on the chaos soon :)

Until then, here is an incredible video about our good buddy Braxton (grab a tissue) that was made for their annual walk for The Dravet Syndrome Foundation. He and Cole are only 3 days apart. We genuinely wish that we could have been at his walk today and hope to make it next year. We really love his family and are actually actively recruiting for them to come and live in our Dravet compound! *double wink*

I really relate to his mom when she says, "There is so much hidden underneath his smile".

Cole is still smiling, even though the last little while has been hard and confusing and more than a little frustrating. Each day I have hope for more information, more research and a better tomorrow for sweet angels just like Braxton and Cole.

Joy

Make an on-line slide show at www.OneTrueMedia.com

That laugh is pure joy.

Aarilynne's Story - Life with Epilepsy and Dravet Syndrome

Going with the this weeks theme, I wanted to post a video that another Dravet family made. I think they did a great job, and Cole has the majority of the same issues, plus others. We are grateful to be able to educate others about Epilepsy and Dravet Syndrome. We get e-mails all of the time when someone has been googling and come across our website. We love it, because we have SO been there. Knowledge is power. Here is Aarilynne's story.