Happy Birthday Mr. Jet Dog!

*Warning, tons of Jet pictures to come:)

Jet is one today! We are so thankful to have him, and he's such a good boy! He has given so much to Ethan since we have had him. Above all else he's an amazing companion to him, and gives him someone who will always be there to play with him, and snuggle with him. Just within days of having him we saw a decrease in Ethan's seizures. As a 16 week old puppy he instinctively knew to be calm and relaxed around him. Ethan is prone to seizing when he cries because of hyperventilation. He would cry then have several drop seizures. Once Jet was here he would call out to Jet whenever he would start crying and he would come and lay with him settling him down and stopping the seizures.

His first week home.

From the beginning he showed himself as an extremely calm and gentle dog, not what you would imagine a puppy as at all. He never ran around crazy and jumped up on the kids. Instead he would would approach gently wagging his tail, and sit calmly to be petted. He caught on to training extremely fast, and had the basics (sit, stay, come, down, heel) down in a week. Looking at him you could see him thinking, and trying to problem solve, something I've never seen in a dog before. He would always keep an ever watchful eye on Ethan. Wherever Ethan went Jet followed. When you looked at him you saw he was a puppy, but it was quickly forgotten when you saw the way he acted.

Eventually we started public access training with him. I was shocked every time when that vest went on and his always calm attitude became even more calm and even better behaved. He did always what he was told when he was told. He would walk calmly through any crowd never blinking an eye and ignoring anything else around him.

One of his first trips out.

Around 6 or 7 months we began to notice after Ethan's seizures in his postictal stage Jet would lay with him, never leaving his side. He was mostly oblivious when the seizure was occurring, but somehow knew he was to stay with him afterward.

Where you find one you're likely to find the other. Jet is very in tune with Ethan, and knows when to keep an extra close watch on him, and when to give him his space but watch from a distance. Ethan has recently been moved into his own room right next to ours. Jet can choose between sleeping on our bed, in his bed in our room, or in Ethan's room, but most nights we find him asleep on Ethan's floor, the most uncomfortable option, but where he chooses to be.

Looking a bit too much like a poodle here....

Taylor loves him too:)

Over the months he has become more and more aware of Ethan's seizures, and more concerned about them. He usually reacts after they have begun. He will come and lay with him, often licking him and just being there, and always sleeping with him after. Today made 4 weeks and 1 day between tonic-clonic seizures for Ethan, the longest he's ever gone. We have been on edge for the last week knowing it would happen anytime. I was making Taylor's breakfast this morning when I heard ever so familiar noises coming from Ethan. I looked over and found him on the floor in the tonic phase with his best buddy laying over him:) What a way to show how special he is on his birthday!

This mornings seizure.

I can't wait to see what the future holds for him. It seems every day he does something that amazes me. He may or may not ever learn to detect his seizures before they happen, but I can only imagine he will continue to respond and react. We are currently working on him retrieving his rescue meds, and he's doing well with that. A treat or two is always good incentive! We hope to have him attending school with Ethan in the next year or two. This is more an issue of Ethan becoming a handler instead of me, and Jet taking commands from him and obeying. He has given so much to Ethan and the whole family in the last year, we can't imagine life without him!

Happy Holidays!

We try so hard for a Santa picture every year. After 12+ shots this was the best! Of course Mr. Jet Dog was the one sitting still looking at the camera the whole time.... Maybe next year! They still look adorable though!

 

Changes, Frustration, and Fear

There have been some fairly major changes since my last post. The biggest being that we are officially done with keto! As much as it has helped, it also became a major quality of life issue for Ethan. This little boy was not happy, and often quite depressed and sad. He would cry for hours because of his food. We started a slow wean about a month ago slowly adding in carbs and starches. He has been solidly off for about 2 weeks now. He has had a slight increase in seizures, including seeing drops for the first time in months, but he is a new boy:) I haven't seen him smile so much in over a year! He's probably had a 15%-20% increase in seizure activity, and he has gotten more shaky, but he's no where near where he was before. Dealing with a few extra seizures a day is well worth the smiley happy boy I have back!

 

Another big change is Ethan moving back into his own room! The Danny Did Foundation called me up and told me they wanted to give Ethan an Emfit monitor to not only possibly save his life one day, but to also lessen the burden on Mike and I. Ethan has been sleeping in our room since this all started over a year ago. There is something in epilepsy called sudden unexplained death in epilepsy (SUDEP). It's kind of like SIDS for people living with epilepsy. There are certain things that increase your chances of having this though. Ethan is pretty high risk. He has uncontrolled seizures, is a male, and is on 3 different AED's (antiepileptic drugs). What they think often causes it is having a seizure during sleep and suffocating in the pillow, or it just not stopping. This is why we have slept with him so close to us all this time. But the Emfit monitor detects not only nocturnal seizures, but also when he is up out of bed/"no movement" which means not breathing. So Ethan is back in his own room! He loves his room, but he's still sneaking into our bed most nights so we're trying to get him used to staying there. He also wakes up when the alarm goes off (which it does fairly often) and then can't go back to sleep. We're getting there though!

Ethan's very own room! Decorated for Christmas of course:)

The only problem with Ethan being away from me and in his own bed is that every single night I fear he will move off the sensor, and I will find him in his bed dead. It's a very real fear, and it's something I wish I didn't have to think about. Whenever he naps I check on him every 5 minutes to make sure he is breathing well. Just 2 nights ago he fell asleep in our bed and his breathing was very odd. He would take 2 breaths then not breath again for 30 seconds, then 2 more breaths. When I fall asleep at night I get flashes of finding him not breathing in his bed in the morning. For most people this would be a ridiculous fear, for for parents of children with severe epilepsy it is all too real. I'm filled with horrible anxiety most days. I bounce between being completely fed up with his behavior (children with Doose suffer major behavior problems) and fearing for his life. It's just a bad place to be in. I hope it gets easier to deal with as his seizures have, but I suppose only time will tell.

Ethan is also gearing up to start school.... again... hopefully for good this time. Over the last few months he has been evaluated by the special education program for our district, and we have a meeting on the 9th to sort of wrap things up and get him placed. We're thinking for sure by the start of next semester, and possibly some time in December! I'm so excited for him! The days will be longer, and it will be 4 days a week instead of 3. They will actually hire someone specifically for Ethan, to be with him all day and help him out. I think it will be great for him. Instead of me picking him up every day and wondering what he did this time, or how far behind he's fallen, these people are used to working with children with disabilities, and I can only imagine it will be all positive. I can't wait to see the progress he makes, and the friends he makes as well! He needs friends so badly, but doesn't mesh terribly well with his piers. His social skills are behind with the rest of his skills. Who knows, maybe a best buddy is in Ethan's near future:)

And just a little update on Jet. He continues to be an amazing dog! He just turned 11 months old, which you could never tell by seeing him, he acts like a mature dog 3 times his age. At 8 months he passed his AKC Canine Good Citizen test, which I was very proud of him for! Thanks Hugh and Angela for including us (and giving Stubby and awesome home!). We take him out most places to get him very comfortable to being in all kinds of situations. We had him out black Friday, and he was completely unphased by all the commotion. He's so very laid back, and can probably sleep anywhere. Standing in lines for 20 minutes he just lays down in the middle of everything. He's not the type of dog that wants to run up to people and be pet, and I think that helps in those situations. He'll sniff a new person, but really hold his distance until he is completely sure of them. Just yesterday I had him out with the kids. We stopped to eat and he of course passed out under the table. Ethan dropped an entire hamburger right in front of his nose. He held his head up to look, completely ignored it, and went back to sleep. Then 5 minutes later Ethan spilled an entire cup of milk on top of him. Poor dog. But of course he was unphased! He just looked at my like come on mom, clean me up already. At home he would have eaten that burger up in 2 seconds. He's a very different dog the second that vest goes on him.

 

We have been doing scent work with Jet for a few months now. Whenever Ethan has one of his large tonic clonic seizures I take one of his items of clothing and freeze it. We started small with just the second he would sniff it he would get treats and praise, and now he can do a blind retrieve over distance until he finds it. It's his favorite game and he gets so excited when he sees me pull something out! No one quite knows for sure, but it's believed that dogs can sense seizures because of a scent that is released. So that's why we continue to do it! Jet is quite responsive to Ethan's seizures, and I've gotten some pointers this week of how to improve his behavior even more during his seizures. I hate to say I can't wait for his next one, but I can't wait to try out the techniques! Here is a video of the second time Jet did a blind retrieve on a pair of Ethan's pants. I really need to take an updated video, but this gives you an idea. And yes, my basement was cluttered with toys:) http://www.youtube.com/watch?v=nipcC-aJ9SU&feature=related And him loving on Ethan during a seizure. This video is graphic. http://www.youtube.com/watch?v=Y_rKLFWlduI&feature=related

Where the boys spent Thanksgiving!

Last but not least I want to announce the arrival of my sweet baby nephew Wyatt Kent. He is such a little angel, and so teeny tiny! He was born 3.5 weeks early, but it perfectly healthy! I just love him so much, and wish I lived closer so I could see him more often! I was able to fly in just after he was born, and still in the hospital and stay with him for a few days. He's ridiculously perfect!!!

 

One Year In

One year ago today our lives changed terribly.  One year ago today I sent Ethan off to school, his favorite place in the world just like any other day. One year ago today I had a happy, healthy, slightly clumsy and slightly speech delayed 3 year old, and an adorable 8 month old baby girl. One year ago today I watched my child seize for the first time and held him while I thought he was dying. One year ago today I had to call 911 for the first time with fear and panic in my voice and beg for them to hurry and save my child. It’s amazing how life can change in the blink of an eye.

I remember it like it was yesterday, the memory is so clear and bright in my mind still. You know those random memories from early in childhood you remember vividly? This day will never leave my mind just like that. I was sitting on the floor sewing for my store. I remember the exact pair of pants I was working on, it was these ones with the elephant. (Etsy) I recall every part of this in extreme detail, and I set there on the floor in the living room while Ethan kept climbing up on a chair and bringing me snacks and asking to eat them. Each time I told him no and took the snacks back up to the high cabinet he knew he wasn't supposed to be in. I set there and watched one more time as he climbed up in the chair, then slumped down into the corner. I got up with a smile on my face to see what silly prank he was pulling this time. What I saw is burned into my memory. His body was limp and his head was back with his eyes rolling up into his head and he was gurgling and choking on his saliva. I grabbed him screaming his name and fumbled into the living room searching for my phone. I had a new phone and literally didn't know how to get to the dial pad to make a call. In what felt like an eternity I was able to make the call and tell them what was in front of me. The lady on the other side attempted to calm me and asked me to count his breaths once he started to come out. Who knows how long it took until the paramedics arrived, it felt like forever. Our house at the time was about 2 miles from the fire department so it couldn't have been long. By the time the paramedics came in the house he was asleep, and passed out in my arms. I was thankful to see he was breathing. They informed me he probably had a seizure. I had never seen a seizure (besides on TV, and it's funny how fake TV seizures are now....) and didn't know how to recognize one, and didn't know that me whipping him around and screaming at him was probably the worst thing I could have done. Once they got him stabilized I called Mike to tell him what had happened. I remember trying to speak in a very calm voice, "Mike, are you almost home? Ethan just had a seizure." I remember the panic and fear in his voice while he tried to wrap his head around it. I'm sure he went about 90 to get home in the next 2 minutes, and came inside to greet the crowd now gathered in our house. One of the paramedics had gone upstairs to make sure Taylor was ok, and I remember her face as she was brought downstairs terrified because a stranger had taken her from her crib while she was sleeping. She was crying and reaching for me. I remember the super comfy but horribly ugly teal green jammy pants I was wearing with a regular shirt, and the fact that Ethan was naked from the waist down. The kid just doesn't like clothes! I watched Mike carry Ethan out to the ambulance to be taken to the hospital, and I was sad at the sight I saw. There was an ambulance, fire truck, and police car right outside our house. If Ethan wasn't passed out he would have been so excited to see it all. I could hear his reaction, "Wow mama, loop (yes, loop) at that! It's a fire(truck)! I want to get in?" Instead I stood on my front porch holding my baby girl tight knowing all those emergency vehicles were there because something bad had happened. I set there crying when my amazing next door neighbor Sky came over to help in any way she could. I'm sad that we hadn't really spoke before then, but she was so sweet, and spoke calmly and slowly and attempted to calm me down. She reassured me that everything would be fine, and even offered to watch Taylor so I could go in the ambulance too. I couldn't let go of my baby girl at that point so I said no. It was nice to have another mother there in a loving way just to hug me though.

Ethan had a tonic clonic seizure just 3 days ago. How do seizures go in our house now days? Mike calls for me, "Hey Taryn, he's having a seizure." "Ok, I'm coming." We speak as though we're calling one or the other to dinner. One checks the time and we sit there with him. We remind each other to turn him a little more on his side when he starts choking and turning blue. My first thought is always to grab a camera to take a video so I can pass it on to his neurologist. (Tonic Clonic Seizure) (Myoclonic Astatic Seizure) (Myoclonic Status) It feels evil to sit there and film seizures, but it's beneficial. My next thought is getting his clothes off him so I can put them in baggies and freeze them to work on scent training with Jet. (Jet doing a blind retrieve on seizure scented pants) Seizures have become a regular event in our home, not really a big deal, but something to catch your attention like a jet flying over the house, or an ad for an exciting new product on TV. We compare them to each other." How was this one different. It was more violent than the last one, but shorter. That's weird. What did he do different today. He had a little weird thing a minute ago, I wonder if that was connected." The conversation goes back and forth. We don't rush him to a hospital, we don't call an ambulance, we don't even call his doctor, we just lay him down in bed and point a video monitor at him so we can watch him while we go along with our day. That's his life. He wakes up an hour or two later and stumbles out of our room shaking like crazy and tells us he had a good nap. He doesn't know how he went from playing downstairs to being asleep in our room. He doesn't yet know he's different. That's protecting him for now.

What are some of the numbers from the last year?

• Number of MRI's - 1
• Number of CT scans - 4
• Number of blood draws -  50-60
• Number of EEG's - 12
• Number of hospitalizations - 12
• Number of months with some time spent hospitalized - 6
• Approx number of seizures - 145,000 +
• Approx total health bills - $1,000,000 +
• Number of pills taken daily - 19
• Number of different drugs taken daily - 7 (3 AED's, 4 supplements)
• Amount of heavy whipping cream drank daily - approx 8.5oz
• Amount of butter eaten daily - approx 2.5 oz
• Amount of carbs (fruits and veg) allowed daily - 23 gram (less than an oz)
• Years of preschool dropped out of - 2
• Approx brain age of our 4.5 year old - 2.5
• Number of times the paramedics have been called to our house - 2
• Number of moves as a result of his epilepsy - 1
• Number of doctors and specialists seen at some point on a regular basis- 7

So where are we one year later? Ethan is being treated with the ketogenic diet. We were told around 6 months in (where we are now) we could start weaning meds. In the last month and a half we have added 3 more pills. Ethan continues to seize every single day. He's having an estimated 20-30 myoclonic/atonic/absence/a-typical absence seizures every day, and a tonic clonic every 1-3 weeks. We have watched his mind deteriorate. He has a very hard time learning, and staying focused, and has developed extreme behavior problems often associated with this type of epilepsy. He is a prisoner in our home. He wakes up, takes meds, is forced to eat his food which he hates more and more every day. We can't leave the house because he can't be controlled. It's not safe to take him out with a baby. He naps around 10 am because in the 3 hours he's up by that point his brain is too tired from seizing to stay awake any longer. He plays with his dog, his best friend in the world, and if the weather is ok we play in the backyard. He doesn't do things a normal 4.5 year old does. He has had to be pulled from school already this year, he has no friends, he can't interact with kids his age. He isn't involved in any activities, one bump to the head and he's done. For the first time the other day he peddled a tricycle down the street. When he should be learning to ride a bike without training wheels, his parents are cheering him on while he pedaled. He sits with his 20 month old sister while I teach them the same things every day; numbers, colors, ABC's. She catches on faster than him most days. We're alone all day, every day, no visitors. I can't even shower alone. I have to put him on the floor in there with me. He has to be watched at all times. There is no taking 2 minutes for myself, it's not safe. Amazing people have come in to our lives, and others have left. The kindness of strangers continues to amaze me, and others that should be there disappear. He's alot to handle, all his health problems and extreme behavior problems leave me pulling my hair out at the end of the day, and while he's finally sleeping at night I'm up every hour to check to make sure he hasn't been taken by SUDEP.  Then I have a 20 month old toddler to care for on top of everything else. I'm very emotionally and physically drained. Some days I don't know how I'm going to do it, and it's hard for me to do all this alone. But what choice do I have? Mike has to work, we have to have a roof over our heads and food on our plate, and it's not as though I can toss him in a daycare while I go to work, they can't care for him.

I am getting a small break soon. My sister and her husband are having their very first baby due in early December, and I'm headed out to AZ for her baby shower toward the end of the month.... ALONE! I need to recover some from the last year. Focus on me for a few days. I'll be worried about the kids the whole time, but I need this for my mental health. Plus I can't wait to see Wyatt! Well, he's still in her belly but I can feel him kick and turn and tell him how much I love him! I can't wait to hold him! It won't be long. I've never loved another child like they were my own. I'm the baby of the family so there were never any little ones around me. I'm very excited to see what the relationship will be like. Just wish we lived closer so I could see him more!

So today I will go on, because what choice do we have as parents? I'll watch my child go more down hill. I'll watch as the circles under his sunken eyes grow larger, and the light rash spreads across his very pale skin. I'll watch as my child becomes more and more sick and I just hope new research comes along that can help him. I'll hope he gets into the special education program through the district preschool, and I'll hope he can get an aid at his old preschool so he can return in the mean time. I'll listen to the nurse tell me that because of his slight improvement on the keto diet that they declined him for Make-a-Wish. Guess I should have called 6 months ago. All the poor kid wants in the whole world is to go to the beach. I guess I'll have to call when he declines again. You would think now that he's slightly stable it would be a better time to plan a trip, but what do I know! I don't have the heart to tell him. He needs something in his life to excite him, to lift his spirits. Doose is a horrible horrible disorder, and it has taken our sweet boy. Where will we go with this next? Only time will tell....

Vacation and School

We are finally back from vacation, and trying to get some rest. It was EXHAUSTING, but sooooo much fun! We loaded up the kids and the dog the morning of our flight, and were on our way! We left extra early because we knew flying with a dog, and a bunch of extra foods and cream was going to delay us, even though I had thought ahead to get a doctor's note explaining why we had everything. Everything was going pretty well until the metal detectors started beeping at Jet. He freaked out and Mike had to carry him though security. I figured that was a bad sign, and started to freak out. But all was well and Ethan was so excited to see his Aunt Cole (and his cousin Wyatt in her belly) waiting for him!

  

He loves her to pieces!

He loves her so much, and had been asking for weeks when we were leaving just so he could see her. She spoils him:) We got everyone on the plane, and being the amazing dog he is, Jet laid down on the floor by our feet and passed right out. I kept forgetting he was there! He popped up for a minute during takeoff, and was a little worried, but I told him it was fine and he laid right back down not be be heard of again until we got off.

We got back to my grandparent's house, and let the kids run wild! They had so much fun playing with their cousins. Ethan is in love with Dakota, she's 6, and Taylor stuck like glue to Gianna who is only 2 months older than her. Can you imagine the fun they will have as they grow up? Jet had the time of his life running around the unfenced yard, and playing with all the kids.... And adults, let's face it:)

There's Wyatt! Can't wait to meet him!

The girls loving up Great Grandma!

 Ethan loved sleeping and staying in my grandparent's RV! He kept sneaking up to the driver's seat and pretending to drive:)

The next day we went to my grandpa's 80th birthday party. Isn't that amazing, 80 years! I hope I make it that long. The things you see in that time are just amazing. Many of the people there I recognized, and was able to meet even more. I was thrilled when my godparent's, Great Uncle Jim and Aunt Nina, showed up. I've been telling Mike about them for years, and it was so nice for him and the kids to meet them! Ethan saw them when he was about 6 months old when we were out in Arizona visiting my sister, but obviously he doesn't remember that. It was definitely time for a visit!

Uncle Jim with Taylor!

Aunt Nina!

They had a huge field outside for the kids to run to their hearts content, and apparently they had a conveniently placed puddle for the kids to splash in....

 And just because, how adorable is this? They wanted to hold hands, so precious!

The kids were exhausted at the end of the day, and Taylor passed out in 2 minutes flat which is unheard of for her! The next day when we woke up Ethan was overly excited because he knew we were going to the beach!!!! He has been asking for years to go to the beach, and a lake beach is perfectly good for him! His tremors started to get pretty bad around then. The stress and change was causing subclinical seizures, but no big seizures, and they didn't seem to be affecting him much. You should have seen the look on his face when he started seeing water. he was trying to hold back his excitement, but it was shining through all over his face. He couldn't wait!

 

 Even Jet got in on the beach action. I took him out to swim a few times. I had to see how well those webbed paws really work!

If there's one thing that exhausts kids, it's playing at the beach all day!

 After a good nap we got the kids back to the house for dinner and more play time! They had a blast, as usual!

 Gianna was ready for a nap, but Jet had stolen her bed.... He's soft and fluffy enough to just lay right on top of!

 Ethan even climbed a tree for the very first time. No one tell his neurologist. He is, after all, on a strict no climbing trees order:)

So proud of himself!

The next morning it was off to breakfast, then flying back home. It was alot packed into 3 days, but so much fun! We were so happy to be able to see everyone, and get our boy to the beach:)

Fatty....

Ethan loves Dakota to pieces!

Getting in a last bit of playtime with Gianna

The flight home was great. Anticipating the problem we had at security on our way in, I took off Jet's collar so he wouldn't have metal on him, put him in a sit-stay in the middle of airport security (you know how busy and loud it is), walked through with Taylor then called him to me. He obeyed perfectly. I was so amazingly proud of him on this trip. I constantly forget that he is only 9 months old. He has his moments, but overall he is an amazingly well behaved dog, and so very smart (Just ask Kortney, she taught him to shake while we were there).

We had no time to rest because just 2 days later Ethan was starting preschool again! He's been so excited for it, he just adores going to school! The morning of he ran out of our room in his jammies with his backpack on and said he was ready! Such a cutie:) We got a little shock when it was freezing out. It was in the 50's, and I haven't gone fall clothes shopping for the kids yet! Ethan has the same problem with jeans I've had my whole life. He's super skinny with long LONG legs. Nothing fits right:) We put on the pair he had that fit the best, and of course paired it with a Mario shirt, Mario sweatshirt, and Mario backpack!!!!

Silly boy refused to look at me for a picture:)

His head still covered in EEG glue that WILL NOT come out!

Such a cutie!

I went through Taylor's closet looking for any warm clothes that might fit, and found a pair of too big jeans, and a too big sweater. It worked for one day:)

He has no problem leaving us at school, and he ran straight into his class and started to play! We kissed him goodbye and handed over his emergency meds, just in case:) He's only had one big seizure at school, but you never know when one will strike so it's good to have those there. We really hope he can finish out school this year. He was devastated when he quit last year, it's his favorite place in the world to be!

Already making friends!

Then it was just me and Taylor, and I literally had no idea what to do with my time.... I was at a loss! She needed to eat and I decided to take her to McDonalds to get some pancakes. I used to take Ethan there to play all the time before he got sick. He used to have a blast, and I could relax. Now that Taylor is a year and a half I thought she might have a fun time playing now too! And go figure, there was a little girl there a month older than her to play with!

Weeeeee!

 

So all in all we've had an extremely busy week, packing a hospitalization, vacation, and starting school all in. Ethan seems to be coping with the stress pretty well though, so we'll see where life takes us from here!