3 Months

Ethan is 3 months out of surgery, and this blog is well overdue for an update. He is doing beyond fantastic, and our life is becoming normal in a way that we never thought to be possible. We often remember holidays around here not by the joy they brought, but by what "gifts" Ethan's epilepsy brought us that year. First off was Halloween, obviously a much loved holiday for kids. Two years ago we were fresh into this journey. He had only had 2 seizures up to that point. We were on edge of course, but had no idea what was truly ahead of us. We took him out and I remember one house that he got to where he suddenly looked up a little and dropped his candy. We knew nothing of different seizure types at the time, and although it struck us as odd, we didn't think much of it. He got home and just shortly after, and while sorting his candy he had his third ever tonic clonic seizure. This was the first one that both Mike and my Mother-in-law had witnessed, and that's a horror that never leaves you. There was shock and tears, and we watched our son have his first holiday taken from him as he lay postictle for the next 3 hours. Last year was slightly better. He was on his ketogenic diet which meant he could not have a single piece of candy, just one could send him straight back to the hospital. So we let him go as normal, but watched his every move making sure he snuck nothing. We took everything from him the moment he got home and attempted to trade some toy for his candy. Not how any 4 year old would wish to spend that day! But then there was this year, seizure free and like a new kid. He had a light about him we hadn't seen in all those years, joyfully running around the neighborhood dragging his sister along and telling her to go faster, him calling the shots. It was perfect, he was indistinguishable from any other child out there, and this Halloween will be remembered as his first seizure free, and back to being a typical child!

2010, 2011, & 2012

And that's what keeps striking us, we keep saying he's so normal, he's back to normal. So many parents get caught up in their kids being the absolute best, no less is to be accepted. Heaven forbid you come in second, not acceptable. Of course it's great to encourage them to be their best, but you must learn to accept their best. This stresses kids to no end, and can leave life long scars. But why not step back and wonder what's so bad about average? Why can't we just wish happiness for our children, nothing more? Average is perfect, average is great! After having no normalcy in our lives, and having an extremely delayed child I wish nothing but normalcy for him, because it would be a huge gift. Him being able to simply keep up with his class, and have normal relationships with his friends would be amazing. He is learning at an incredible rate, and he may be there in a few years. He missed 2 years of development, of retaining any information. He and Taylor play hide and seek. Ethan will count; 1, 6, 9, eleventeen, here I come! Taylor will count; 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 here I come! Developmentally they're nearly on the same level, her closing in on 3, and him missing 2 years making him around 3.5. Academically she's significantly ahead. That's hard to watch. But the surgery has finally freed his brain, and he's finally making steps in the right direction. He's writing his name, recognizing nearly half his letters, making observations about things like he's never done. The lights are finally on, and he's playing catch up! No doubt he'll get there, we just have to give him time.

A couple of weeks ago we were admitted in for a new EEG and sleep study. We were extremely nervous and anxious waiting for the news it would bring. We knew what we were seeing, zero seizure activity, and his breathing at night had become normal. But what would they actually see when they looked in his brain? We made it up to the hospital and were checked into our room. I get physically ill every time we have to go. The memories there are enough to haunt anyone. We sat around waiting for a long time, and later found out it was because another child needed 3 EEG techs hooking him up at one time because he just couldn't sit through it. What a proud mommy moment, my boy lays there stoic like the champ he is!

 

 Once he was all hooked up and the monitor was turned on, I saw all the spiking start. The ever so familiar signs that shows his brain isn't doing what it's supposed to. It was different, I saw the spikes reach the center of the brain and not pass through to the other side which showed the surgery was working, it was stopping the spread, but there was a lot of spiking, about every minute. I was getting nervous, and thought this meant the worse, we weren't seeing anything, but his brain was still a wreck. The sleep tech came in that evening to hook him up for his sleep study. Once again he laid
there not complaining as he was completely wired up. And once done, he fell straight to sleep. Could you sleep with all this over you?

 

When he had his first sleep study back in March, the tech was in and out of the room nearly constantly all night. This time I saw him come in exactly once. I woke up thinking that had to be good news, right? He came in to unhook the sleep leads in the morning. The techs can't actually tell you anything, but when I asked if he needed to turn on the oxygen at all, he responded with. "I didn't feel he needed it". No oxygen, his breathing was normal! It was seizures causing the breathing issues at night. I was still nervous about all the EEG activity I had been seeing though, but apparently there's a reason people go to school for years to read and EEG. The neurologist came in later to give us the results. Yes, there was quite a bit of spiking going to, however, the type of activity they were seeing actually corresponds with the extremely high dose of one of the drugs he's on, Clobazam. He's on a dose about 2.5 times higher than the highest recommended dose, and although it's been a drug that has worked fairly well for him, it causes changes in brain activity. Best news of all, he had ZERO seizures during the entire study, not one! What we had been seeing is what the EEG saw, no seizures! The surgery was working, and working great! We were going home off oxygen with concrete proof he was not seizing, I can't even explain how wonderful of a feeling that is!

Just after getting unhooked, and learning he's not seizing!

So we went home with one goal in mind, finally after 2 years kicking him out of our room! We took his bed down, his favorite toys, and his fish tank. All were arranged how he wanted, and it's amazing how much more space there now is in our bedroom! He is now living every kids dream, a nice big room attached to a giant playroom. He even had me print out a "No Taylor Allowed" sign, and yells it at her whenever she starts invading his new territory. We allow him to go up and down the stairs at will, after never allowing one step on them without us holding onto him. We're working very hard on taking a step back and allowing him to have the freedom that didn't naturally develop over the last 2 years. The fear is still there, and I don't know if it will ever leave. If I hear him make one of his typical seizure sounds, or fall suddenly I jump up and react before I know what's going on, and my heart races and adrenalin starts pumping. Obviously I'm not completely over everything that happened, and after only 3 months shouldn't expect to be. I still worry that in another month, next summer, in 2 years that they are going to start up again, and this whole nightmare will replay itself. I'm a worrier by nature, and really wish I could push those thoughts away. I still worry he will die every night, and often find myself sneaking down the stairs at 2 in the morning checking the blinking lights on his Emfit monitor to make sure he is breathing. When he sleeps a little late horrible thoughts start going through my mind. Hopefully someday these will at lease ease, and maybe pass.

His new room!

Right around the corner is Christmas, yet another holiday we mark with seizure activity, and yet another we wish to proudly announce was marked by none! He's so much more into it this year, so much more aware. He's loving every aspect. We let him go and pick out the tree he wanted, no matter how big or funny looking. We remind him that Santa is watching, and he's to be on his best behavior, and he gets it. We also know it's not seizures causing horrid behavior problems this year, and he's being held accountable. This is by far our happiest Christmas ever, and it's a time filled with joy and excitement for a change. 2013 is going to be a huge year. Taylor is 3 at the end of January, we're having a new baby at the end of February, and we get to watch excitedly as Ethan grows into a more amazing little boy every day! Our lives are finally filled with hope and excitement, instead of dread and constant fear. This kid is going places, and we can't wait to see where!



Picking out his tree.

2 Years

I woke up this morning to an alarm going off at 5. Not an alarm on a clock, not an alarm on a phone, the alarm on the bed of my 5 year old sleeping next to me that tells me when he's having a seizure, or when he stops breathing. As always I hopped out of bed, but found nothing more than that he had rolled off the sensor and triggered the alarm. This is a completely normal occurrence that happens 10-12 times a week. Sometimes I find him sleeping on the floor because he's rolled out of bed, but others I find him face down in his pillow convulsing violently and know that without that alarm the morning could end in tragedy. What do I do when I find him like that? Do I panic, do I call an ambulance? Nope, I calmly turn him on his side and give the clock a quick glance to check the time. I stay with him rubbing his back until he comes out, or I notice it's not stopping and I need to give him medication to stop it for him. He always comes out with a very deep breath to fill up his chest again, then fidgets around as his brain searches for normalcy. I cover him back up, kiss him on the head, and tell him I love him. Then get up and go about my day.

2 years ago on this day at approximately 3 in the afternoon this routine was played out for the first time. The difference is I didn't have my honorary degree in neurology. I had no idea what was going on, I didn't even know what a seizure was. I saw my silly boy slump down in a chair and I assumed he was "playing dead" as 3 year old boys love to do. I remember calmly getting up with a smile on my face, then I remember the look on his face. It's burned into my brain forever. His head was thrown back, his eyes were rolled back in his head, and he was gurgling. Seizure safety is to lay the person on their side. I didn't know this, I thought he was choking. I flipped him up over my shoulder and smacked him on the back as I made a 911 call for the first time in my life. I don't even remember what the lady on the other end said to me. I held him as he came out and collapsed in my arms as the paramedics showed up. They put him on oxygen and assessed him as they told me he most likely had a seizure. I called Mike at that time to tell him. I remember trying to speak as calmly as possible and told him he had a seizure and the paramedics were taking him to the hospital. I heard him half scream, half cry "What?" from the other side of the phone. I lost it and gave the phone to one of the paramedics because I couldn't keep my emotions in check anymore. He arrived just minutes later to ride to the hospital with him. I was left in the doorway holding a then 8 month old Taylor completely in shock.

I made it to the hospital soon after. I found him sleeping, and was informed he had a CT and full blood panel done and that nothing was out of the normal. We were told it was febrile, and he had a fever that we missed. We were told febrile seizures are extremely common in kids, and that it wouldn't happen again. Just go home and go on with your life, it's no big deal. So we did.

That was the worst day of my life. That whole scene plays out in my dreams almost every night. I wake up in a panic, but unfortunately I realize the nightmare is our reality. I glance over and see the shell of the boy he's become. I see the oxygen tubes on his face. I hurt for him. The upside is he's young. Since this started at 3 he didn't have enough time to develop self awareness before it hit. I don't think he even realizes he's different than other kids, he just loves everyone, and sees everyone as equal. I wish everyone could live their lives through the same eyes, there would be so much less hate and discrimination in the world.

So we've gone on with our journey. 13 medications, and insane diet, and dozens of hospitalizations later the topic of brain surgery comes up. It's an interesting transition you go through. It's always the next medication, then this outrageous diet, but then you get to a point where you've reached the bottom of the list, and you know it. I remember the appointment, Ethan was asleep in a wagon and I asked where we go from here. His doctor replied that there's one more medication, a very risky drug named Felbatol, and after that perhaps a VNS or corpus callosotomy. I knew what Felbatol was, I knew was a VNS was, I had no idea what a corpus callosotomy was. In all my Dr. Google research I had never even come over the term. I looked it up on the drive home and remember exclaiming, "That's brain surgery". I read every bit I could about it from there on out. It's strange when you start to realize that brain surgery could be less risky, and have a higher success rate than the majority of drugs your child has been on. It's that switch when you want brain surgery for your child, this "elective" surgery as they referred to it as.

So we start bringing it up with the doctor whenever we could. But come to find out they don't actually do this surgery for kids like Ethan there. He doesn't fit their criteria perfectly. He has nearly as many tonic clonics as he does drops along with a plethora of other seizure types. Statistically the surgery is most effective on drops. But I kept searching through medical journals. I was reading articles written in a language I barely understood, having to look up word after word just to make sense of it all. I was reading different case studies every day. I kept finding the same information; the long term effect on tonic clonics and other generalized seizure types was nearly as good, if not better than the outcome on the atonic seizures. Ethan fit perfectly. After much pushing, his doctor brought him up to the other neurologists and neurosurgeons at their meeting. But they too felt he didn't fit the criteria of whom they perform it on at that hospital. But this time his doctor agreed to do the same digging and research I had been doing for months, and luckily she came to the same conclusion as me, and convinced her colleagues of the same. They agreed to do the surgery on him because of the new understanding I had a part in giving them on the procedure.

So he had the surgery 23 days ago. We've watched him since then regain his strength, regain his speech, and develop new skills that he hasn't been able to attain in years. But what we haven't seen in 25 glorious days is a single seizure, not one. Ethan hasn't been able to retain new information over these last 2 years. His brain has been too much of an electrical mess to hold onto anything. But now everyday something new is coming out of his mouth. He's suddenly repeating all these little phrases we've been saying to him for years. He has a new found love for puzzles, real jig saw puzzles. He can sit down and do one without even looking at the picture. He had trouble with peg puzzles for toddlers before the surgery. He just seems to be learning so much. We still haven't lost the fear that any day the seizures can return, and we never went into this surgery expecting seizure freedom. Yet every day that thought enters my mind, what if this is it? I try to push it away, I don't want to get my hopes up. But every day when someone asks how he is I respond with 11, 18, now 25 days seizure free, checking off the days like a recovering addict. 25 days since our last day of hell, and counting!

So what's next? Who knows. The one thing I've learned is to never expect the expected. Hope for the best, but brace for the worst. He goes back to school on the 29th after fall break. I can't wait to see what he comes home with every day. I can't wait to ask him what he did at school that day and for him to actually have an answer. I can't wait for the holidays. I can't wait to eat Thanksgiving dinner and not watch him have 100 drops at the table smacking his head on the chair repeatedly like he did 2 years ago, or see him completely passed out on the floor with his dog like he was last year. I just can't wait to see Ethan. What people don't understand is we lost him on this day 2 years ago. Everything about him changed, he is not the little boy he was. But every day seizure free we're seeing pieces of that boy coming back. There would be no greater gift than the surgery giving us our Ethan back, the boy he was on October 11, 2010.

 

10 Days Out

It's been 10 days since Ethan had his complete callosotomy in hopes of bettering his life. It will obviously be months or even years before we know how well it has really worked, and what kind of damage it may have caused. After the surgeon had come to tell us that surgery had gone fantastic, we waited outside the ICU for about an hour waiting to go back and see him. The anesthesiologists came out at one time to tell us that he looked great, and was moving his arms and legs. He hadn't yet talked. After waiting for what seemed like forever, we finally got to go back and see him. He looked significantly better than the horror picture I had imagined. He was awake, and had a zig zag incision that went from just behind his hairline to the middle back of his head. All things considered, he looked great! He was clearly happy to see us, though a bit out of it still. He couldn't quite get words out at this point. He was vomiting as well. For the first time in my life, I actually got nauseous and had to sit down and close my eyes. As good as it looked, it still wasn't pretty.


Just post op

His head right after.

Ethan was very tired, which is to be expected. He was not complaining of any pain, but went in and out of sleep. He stayed in the ICU to be monitored more closely. He continued to do quite well. He was drinking a little here and there. He was still vomiting quite regularly. Later in the evening, Mike had to leave to get home to Taylor. I wasn't to be alone for long though. My friend Heather, who also happens to have an awesome little boy with Doose, showed up. Ethan slept through the whole visit, but she brought him a gorgeous embroidered blanket, and even one for Taylor too! It's so nice to be able to chat with someone that completely understands every aspect of what life is like with a child with intractable epilepsy. She commented on how amazing he looked, and I agreed. His eyes were hardly swollen, when I had expected them to be completely swollen shut. Ethan's surgeon even stopped by in that time, at 8:30 at night, to see how he was doing. Keep in mind he had gotten to work at around 7:30 that morning, done a 6 hour surgery on Ethan, and probably had a whole day of clinic visits after that, and still made time to pop in to see him before he left for the day. I really love this surgeon!

His blanket, can't see the embroidery though:)

The next day he continued to do fantastic! He was trying to talk more and more. His voice was very shaky though, and it was clear he was having a hard time finding words. He could only get one or two words out at a time. He was still sleeping a lot, and vomiting here and there. He was keeping down more liquids though. His swelling was still quite minimal. He had puffy eyes, but that's all. He was doing so well that they removed his arterial line, and made plans to transfer him out of ICU because he didn't need that level of care! He was really doing so much better than what was expected. They finally got us a bed on the floor at about 9:00 at night. We got settled in, and he slept until morning!

The next morning he was doing so incredibly well, that we were told he could actually go home if we got him up and walking! This was a huge shock to us, it was only 48 hours after surgery. I had my reservations, but figured they knew best. A bit later in the day we got him up to walk. He couldn't walk without being completely supported, and he was more or less dragging his left side. None the less, the nurse put in the orders to discharge him. The surgeon from the floor was in surgery, and so wasn't seeing how he was actually acting. I knew he wasn't ready to go home, but I wanted out of there so bad that I packed up our things and got ready to get out of there. Upon me picking him up from bed and moving him into his wheelchair, he threw up and was looking pretty bad. The nurse said it was fine and hurried us out the door. He looked miserable on the drive home, and it was about 30 minutes from the hospital I realized the nurse had also left his IV in. Upon arriving home he just wasn't doing well. He was just laying there not moving or even responding. Then the vomiting started up again and wouldn't let up. We also noticed his stomach was quite distended. His normal "innie" belly button was protruding quite far. We called up the surgeon's office, and spoke with his nurse. She was outraged that he was released. It's hospital policy to not allow anyone to leave if they're vomiting, even if it's in the parking lot about to get in the car. They always have to come back and be monitored for a few hours. Besides the vomiting, he was simply in no condition to leave. She told us to get in the car and come back up, and she would have a room waiting for us so we didn't have to go through the ER, she was wonderful! So after 2 hours home, back we went.

During his 2 hours home, obviously miserable.

Waiting to get up to our room, just looking horrible.

They were able to get an IV back in him the night before, you know after the one he was sent home with was removed. It took 2 tries, and he was so out of it that he just laid there while they poked him. The next day he was still looking pretty miserable. He had fluids and anti nausea meds through the night, and he was still throwing up. He also wouldn't eat anything. I asked them to put him on a stronger nausea med, and that one seemed to do the trick, but it also made him very tired and unable to stay awake. Over the next 48 hours or so we were really just working on keeping his vomiting in check, trying to get some nutrition into him, and getting his bowels moving. That was the reason for the distended stomach. They took some x-rays and really bumped up efforts after seeing how bad it was. Neurologically through this all he was doing quite well. Every day he was speaking more and more, and was walking better. Physical and speech therapy started visiting him daily and working with him. These therapies will have to continue for some time as his brain and body heal.

Too tired from the meds to even think about food.

The next days he continued to get better. We tried to get out walking several times a day. He enjoyed getting downstairs to play with the toys, and into the cafeteria to get cookies and "red drink" every day! We were finally seeing him improving, and taking steps forward. He was still vomiting, but not as bad as he had been.

His daily snack!

It was finally on Tuesday that everyone decided he could finally come home. He was eating and drinking, talking and walking so much better, and just overall in better spirits! Have I mentioned yet that he hadn't had a single seizure either??? He was saying all morning that he wanted to go home, and finally around 11:00 the doctor came in with his discharge papers! Off we went!

He set in the wagon for an hour waiting to go home! He was ready, and so was I!

Since being home, he has continued to do better daily. His appetite is getting better, and so is his strength. He seems to be suffering from some type of depression. He's often just moping around and not wanting to do anything. He does have his moments where that happy bubbly boy shines through, and his behavior seems much improved since the procedure. He is also still seizure free!!!! I'm trying not to get my hopes up though because we know this surgery is not designed to eliminate seizures, just to try to control and reduce them. While his strength is improving, it's still not 100%. He jumped off the little chest at the end of our bed yesterday, and it was very awkward and he landed funny. He injured his foot slightly. He's walking with a small limp, and complaining of some pain. He has an appt on Monday with his pediatrician to check his incision, so she can look at it at the same time. If it gets worse before then, it will obviously be looked at earlier. He's enjoying preparing his own food, with our help of course. That's helping him eat more so we can get some meat on his bones! He's so very skinny. He's still more tired than normal, and is almost falling over mid day and needs a nap. That's perfectly fine, and after he's looking more refreshed. He's also sleeping about 12 hours at night, and seems to need every bit. The surgeon is one of the few that does not shave the heads of his patients. He does so to increase their self esteem, even though the process to close the wound is much more labor intensive. A week and a half out because of this, his hair is already growing over the incision and at least to me is hardly noticeable! It's healing very well, and there have been no signs of infection and the swelling is completely gone. So far everything has been beyond my expectations, and of course I hope it all continues to be so!

Eating a tomato he picked himself!

Snuggling with Mr. Jet Dog right before he jumped off the chest.

Surgery Day

I'll try to keep this updated as I get new info. They took him back at 8:30, we got to go back with him while they put him under. He was actually excited to go and not scared at all so that was good. He got to take hit blanket and his "battle force 5" cars. He didn't fight the gas, and drifted off easily. Surgery is expected to last 6 hours, until 230 or so. We should be getting phone calls every hour or so, so I'll update as it goes on.

12:30 pm:  Everything is going great, and they're getting close to finishing the actual surgery, but the process to close is about an hour. So as of now they're actually ahead of schedule, and we might be able to see him in ICU in about 2 hours!

2:00 pm: He's done! The surgeon said it could not have gone better! We're waiting for him to get up to ICU. 

Big News

There is a very big event coming up in Ethan's future. After 13 failed medications, and a failed ketogenic diet, his neurologist gave us 2 more options. First was to put him on Felbatol, a rather dangerous antiepileptic drug used in extreme cases where several other medications had failed. We really didn't want him on it, but eventually agreed to try it. The dose is slowly increased over several weeks, while having bi-weekly blood draws to check for liver function. With every dose Ethan would actually get worse. It became very clear that this drug was not working for him at all, and he was actually sustaining head injuries from the violent seizures that would strike out of nowhere. Upon speaking with his neurologist about it, she informed us that she wanted to go forward with option number 2, a corpus callosotomy.

A corpus callosotomy is a type of brain surgery where the surgeon will go in and separate the bundle of nerve fibers, called the corpus callosum, that connects the two sides of the brain together. Certain types of generalized seizures, atonic and tonic clonic most prevalently, can be significantly reduced by having this done. These are the two most common seizures Ethan has, and they're by far the most dangerous. This surgery can be done two different ways, either by cutting the front 2/3rds, or the entire thing. The surgeon doesn't even want to mess with doing the partial. He feels we would be going in a few months later to finish it anyway so we might as well do it all at one time. Ethan went through a whole neuropsychological exam a couple weeks ago, and he will repeat the test a couple weeks post op to see if any areas have been damaged or altered in any way.

So we head back up to Denver Children's on Tuesday, the 18th for pre op blood work, a full physical, and a CT scan. The next morning he has the surgery so we'll be staying up in a hotel so we don't have to drive up at 4 in the morning! We don't know how long he will stay there. The surgery itself is about 4-5 hours, and he will be staying in the ICU for the first night. From there we've been told anywhere from 4-5 days to several weeks can be expected for a hospital stay. So far Ethan has showed that he heals very quickly, and is a very strong boy, so we're hoping he won't be in the hospital longer than a week or so!

 So that's our next big step, and if successful this could give him a big portion of his life back. Without the constant bombard of seizures he would be able to learn and retain information, have more typical relationships, and perhaps even play on the school playground without his aid one step behind him! Only time will tell, but we're keeping our fingers crossed!

The Ups and Downs of Doose

This blog is long overdue for an update. Ethan continues to have several ups and downs. He'll be great for a period of time, then we'll find ourselves right back where we were with several daily seizures, and watching our child decline. We actually had a very good run. Once we got his dose up on the clobazam he was mostly seizure free for a while. He would have a bad day mixed in here and there, but it was a marked improvement. But slowly but surely we started to see the typical path that new medications always seem to take. Small jerks came back, then drops, then tonic clonics. We would always try to find cause, maybe it was his little cold, or maybe he just had a bad day. But they came more frequently, and eventually we were back to daily seizures, and multiple tonic clonics a week, sometimes more than one in a day. We called and spoke with his doctor and they upped the Clobazam even more, and we were informed he's over the maximum dose on both the medications he's on, and that would be the last increase we could do. We took it for what it was, and continued on hoping the increase would do it. Unfortunately it didn't. The seizures returned full force just a few days later, and we are now stuck here.

Ethan also had a new MRI a couple weeks ago to check to see if they could see a reason for his central sleep apnea, and also to just general check things and compare to his last one. His last MRI was completely clean, and I found myself in limbo between wanting another clean MRI, and wanting them to find something, almost hoping that if they found something they could somehow fix it. The procedure went well, and besides Ethan being angry and groggy after waking up he did fine as well. We got the results a few days later and it was in fact clean, with just some sinus swelling. So that was good/bad news I guess! It leaves him still with no physical reasons for his seizures, and no obvious reasons for his central sleep apnea. As has been the case the whole time, we're left with no reason for this all.

Waking up after the MRI

With his health once again declining his neurologist has been pressuring us to put him on yet another drug called Felbatol. It is a risky drug, and more or less used as a last resort. It has a high chance of side effects, and requires a whole battery of tests before starting it, and blood tests every other week while on it. It also statistically has the same chance of killing his as he has of having Doose in the first place. We are required to sign a waiver for him to even be put on it. We really don't want him on it. After 12 drugs and the ketogenic diet we kind of figure that magical dangerous drug number 13 isn't going to do it, but they have informed us that they will not pursue surgical options until this drug has been marked off the list, and it's either try it or we have no other options for you. So we are begrudgingly putting him on it. Of course there is a chance it will work, but after so many fails you become very skeptical, especially when there is such a risk to it.

Snuggling with his Rhino!

If all this wasn't bad enough, one of my worst nightmares became a reality this week. We have the typical kiddie pool set up in our back yard, a little pool with a foot and a half of water, and and a slide going in. I was laying in a chair about 15 feet away watching the kids play. Ethan was at the top of the slide about to go down when he went into a tonic clonic seizure. I watched him fall down the slide and end up face down in the water as I ran to him. When I got there he was face down and seizing. I grabbed him out by the arm with one hand, as I dialed 911 into my phone on the other, not actually making the call yet. I got him out and he continued to seize for another minute or so and when he came out of it he coughed up a ton of water. I took him inside to dry him off an watch him, and put in a call to his doctor to make sure everything was ok. They said since he did cough up so much water, and was acting fine that he probably got it all up, but to call back if we saw any changes. It's definitely one of those memories, just like his very first seizure, that is burned into my brain. Just him face down in the water flailing. I can't get it out of my mind that if I had my back turned, or was farther away, or had stepped inside for a minute that he could have drowned. It was horrifying, but I'm very happy it did all turn out fine!

Handsome boy!

Our big boy also turned 5 at the end of April! I can't believe he's already 5, who knows where the time goes! He started telling us months before that he wanted a birthday party at Chuck E Cheese, so off we went to every parents favorite place.... It didn't matter, he deserved the best day every, and we would have given him anything we could. But on his actual birthday he got to open his present from mom and dad, a firetruck! I love that we can get him gifts that can secretly be used for both him and Taylor:)

My yearly picture of him in bed in the morning!

So excited!

His firetruck with sissy riding shotgun, and Jet acting as the fire dog:)

The day of his party was 2 hours of chaos, but the smiles on his face were so worth it! He had a blast! Just hope he doesn't want to go back next year:)

Blowing out the candles on his Spongebob cake!

Having a blast! http://www.youtube.com/watch?v=WdQuO5LuKWE

And shortly there after, and much too soon for me, school was out. Ethan graduated preschool!

That's pretty much what has been going on with Ethan over the last couple months. We do have something big we're looking forward to though, we are going on vacation at the end of June, and Ethan is finally going to get his feet in the sand!!!! It has been his wish to go to the beach for years now, and thanks to Kate, and everyone that donated that is going to be a reality! We're not stopping there though, we're also hitting Disney, Legoland, and Seaworld while we're there! Ethan can't stop talking about going to Mickey's house, and Taylor won't stop mentioning Pooh Bear's house! They will have a blast! I can't wait to go to Legoland. Of course it will be fun for the kids, but I grew up in the town it's in, so it will be fun to go back "home" after being gone for so long, and see how things have changed:) It's going to be a blast, and we can not wait!!!!

In one last bit of news we have been working on Jet's training full force. Over the last few months he has gotten so significantly better! I'm amazed at some of the things he can do, and his behavior is fantastic! He even passed his public access test last week! I will eventually get a DVD of the test, and will share it here. Just for fun we tried to get him to open a handicap door, and he got it on his third try! I haven't trained him for any tasks like that, so I was impressed. So I'll leave you with some fun doggy training pictures:)

He really is a water dog!

Don't mess with Jet, his best friends are all German shepherds:)

 They're all having hot dogs thrown at them, none of them touched them:)

Pretending he's a shepherd at training.

Video of Jet working on scent training: http://www.youtube.com/watch?v=KwyquhEzjf0

Please take a second to check out Love My Canine. I don't think we would have gotten half as far as we have without their training and support!
http://sites.google.com/site/lovemycanine/Welcome
https://www.facebook.com/media/set/?set=a.460777783949077.122315.100000505770490&type=3#!/pages/Von-Alpenmac-German-Shepherds/144522108973685

Updates

It's been quite a while since I've updated things here. Once we got home and settled from the last few hospital visits we upped his clobazam up to higher dose, and slowly but surely Ethan seizures started to go away! The drug is working! This isn't to say he is having no seizures. We still feel occasional jerking, and without looking into his brain with EEG there is no way to know for sure. He has had 2 tonic clonic seizures in the last month. These are the typical seizure you think of, the ones you see on TV. His normal tonic clonics do not stop. They are violent and long, and last upward of 6 or 7 minutes on average. Since he's been on the Clobazam at the higher dose, he will go into one but once it gets to the bad point it just kind of fizzles out and he comes out of it. I'm obviously not a doctor, and don't know exactly what the drug is doing, but it seems that it is stopping them from taking their full course and getting out of control which is amazing! His quality of life has definitely improved. Our days don't revolve around seizures at this point, they revolve around Ethan being a normal (mostly) little boy, playing with his dog, playing outside (because it's nice out!), going to school and playing with his friends, and of course bickering with his little sister:) Two big seizures a month is no big deal when you've become accustomed to 100+ a day! We are also finally, after a year and a half, weaning him off of Depakote!!!! It's a nasty drug with bad side effects, and he's been on an ever increasing dose for over a year. It has never made any difference, but it's a front line epilepsy drug that often works well so they have been reluctant to take him off it. He's currenly at only 250mg a day, down from 750mg a day with no increase in his seizures. That leaves him on only 3 drugs so this is good news!

So that is the good news, and mostly the end of it. During our last neurology appointment we brought up to our doctor that when Ethan is sleeping he does this weird breathing thing. Basically he'll take a big breath or two, then not breath for maybe 15-45 seconds, then catch his breath and do it again. We've been noticing this for maybe the last couple of months. Also when we were in the hospital the last few times he would have several de-stats through the night. Doctors would always check him and say yes, he is dropping his stats, but seems stable. She agreed to order a sleep study basically just to shut us up and get us to stop talking about it... When we got the call to schedule it, it was booked all the way out to May! We had them put us on a cancellation list, and last Tuesday morning we were called and asked if we could come that night, of course we said yes even though it meant Ethan would miss one of his last 2 days of school before 2 weeks off for spring break... That's a LONG time for him to not be in school:)

Loving his doggy.

We got up to the sleep lab in the evening, and I saw this as a perfect opportunity to have Jet stay the night at the hospital for the first time. This was a planned short visit, just perfect for him to get his feet wet! We've been focusing much of our training with him on accepting strangers. It's typical for people not to walk up and pet a service dog, and Jet ignores everyone when we're out in public so it's not always seen, but he really doesn't like people. He is nothing like a lab who happily comes up and wags his tail to be petted, he stands away and ignores people, and if you approach him instead of him coming up to you he backs away. The trainer we work with has suggested that unlike most working dogs, we actually encourage people to come up and pet him and give him treats, so while in the hospital we were working on it. While in the waiting room of the sleep lab there was another little boy there, maybe 7 or 8 years old. I was beyond shocked when Jet got up and walked over to this little boy and set right in front of him and licked his face. This is so far away from his normal behavior. He cuddled with this boy and let him love all over him, not much different than he does with Ethan. It turns out that this boy has autism, and somehow Jet picked up on something that told him he was needed there. His mom told me he was completely non verbal until they got a dog that totally brought him out of his shell. It's really amazing the things dogs can do just with their presence!

Pics of Jet at training.

Once they got him back they hooked him all up. They use some EEG leads, then put leads all over his body and face, and tape oxygen tubing to his face. He's such a trooper. No child I've ever met his age would sit there and not complain for an hour while his entire body was wired up and wrapped up. He's such a good boy! Jet fell asleep on his bed, and eventually Ethan got to sleep as well. When he woke up in the morning the tech came to unhook him and told me he needed oxygen in the night. I asked why and he told me he really couldn't tell me, only the doctors can go over results, but "not to worry", and "it's often normal".... I should know better by now then to trust those words.

 Jet hanging out with Ethan!

Not 20 minutes after leaving the hospital I got a call from a nurse. She said they still couldn't give me any results, but it does seem that Ethan does need to be on oxygen and we would be getting a call from a health care company to set up a delivery. I was told he needed to be on it at night, or anytime he was sleeping... But no one wants to tell us why! The health care company came and delivered everything, one huge oxygen canister, and 4 smaller ones for travel and gave us a quick run down on how to use it. He actually had slightly more information than we had been given. He said all he knew is that his oxygen had gotten as low as 83% during the night. Anything under 93% is considered dangerous. So there we were. For the next week we called every single day, multiple times a day to try to get answers as to why we had him on oxygen, and no one could tell us anything because certain people have to sign off on results, but those people can't give results, yadda yadda yadda... We were trying to figure out how to stop him from strangling himself on the tubing. Things got really bad when Mike was woken up in the morning to him choking. I was out in the living room awake already. The tubing had slipped off his nose and around his neck and somehow his legs were pulling down on the tubing and he was choking. Thankfully Mike did wake up and was able to untangle him. It took about 15 minutes before he was breathing well again. That was the end of it, we weren't putting that thing back on him until we knew if there was more of a risk of him not breathing at night, or choking himself.

The next day we did get more answers, but still not all of them. His average oxygen level while sleeping was between 90%-91%, with drops down as low as the 83%. Also he was doing the breathing thing we had been seeing. He was doing this approximately 5% of the time, and in children normal is considered less than 1% of the time. The people in the sleep lab suggested he has a new MRI (his first was done after he had had maybe 5 seizures, and a year and a half later he's had over half a million so I imagine some damage could have been done), and we see a pulmonologist. So finally, 2 days later, our neurologist finally felt she could pick up the phone and call us back. She calls just to tell us there's nothing we can do and we need to call our pediatrician to go over the results. Mike asked her about repeating the MRI and she said even if it did show damage there's nothing we can do about it so why repeat it? Hmmmm, maybe it would be good to know? Obviously our frustration with her is very high right now.

Our amazing pediatrician got us in last minute yesterday. She told us if anything like this ever happens again, and for a week we are sitting with no answers we are to call her and she will take care of things. We're so lucky to have her for a doctor. She randomly calls out of the blue just to check on Ethan, and always makes time to see us even though she has a very busy schedule. She went over the rest of the results with me. Yes, his results were abnormal, and his O2 was very low during the night. Even in her office it was only at 93%. He also had irregular breathing quite frequently during the night. She described it much the same as the way newborns breath when they sleep, breathing fast, then slow, then pausing. This is not normal past the newborn stage. She also said there were frequent periods of apnea, and the type he was having was coming from the brain. She said he absolutely needs a new MRI, no questions asked, quite a difference from our neurologist! They need to see what changes may have happened in his brain that might be causing this. She is getting the MRI set up, and getting us into a pulmonologist. She kept apologizing for how we had been treated and said it was unacceptable! We just love her:)

So for now I guess that's where we are. He has to stay on the oxygen for an indefinite amount of time now. That's just his luck though I suppose. They say any seizure under 5 minutes is completely benign, but Ethan's aren't typically that short. He's had 10, 15, even up to almost 20 minute long tonic clonics. Not only that but he's been in status for days at a time before. I worry what damage it has actually caused, and I guess we will see soon with this new MRI.

And just for anyone that doesn't know, March 26th is epilepsy awareness day. Next Monday wear purple to honor those living with epilepsy, and spread awareness! And I leave you with an adorable squishy puppy pic, and one of spring fun in the warming days to brighten your day:)

One of Hugh and Angela's puppies!
(Hugh helps with Jet's training, and is a breeder of amazing working line German shepherds, check them out! https://www.facebook.com/#!/pages/Von-Alpenmac-German-Shepherds/144522108973685)

UPDATE 5:45PM -  Things quickly turned bad this afternoon. He had about a dozen violent drops, followed by a long and violent full out tonic clonic. He still isn't acting quite right. Let's hope this was just a fluke, and not a change:(

http://www.youtube.com/watch?v=K3NRrzqhLGc

Jet comforting Ethan before it got really bad.

Back to Square One...

Things have continued to go downhill the last couple of weeks. It started small, he would have small jerks here and there, full out myoclonic-astatic seizures maybe once or twice a day, and tonic clonics every week or two. Then they got more violent. His drops are knocking him to the floor, his myoclonics are quite literally throwing him back two feet, and tonic clonics are coming every couple of days, and sometimes multiple times a day. We have been waiting so long for Clobazam and we are finally on it, but in the almost two weeks he's been on it he's gotten worse every day. We ended up in the ER twice last week, and one of those trips found us being transferred via ambulance back up to Children's 70 miles away.

They were so sweet, they turned on the lights for him:)

We arrived in the ER and they put us in a room and basically ignored him. It wasn't until he started clustering that they were paying him a little attention. The ER doc came in and started to tell me how they were planning to watch him for a little while then send us home because there was nothing they could do. Just then Ethan went into a tonic clonic and in a flash the room was filled with about 3 doctors and 5 nurses. It's amazing that the seizures we deal with on a daily basis alone require half a dozen hospital staff and oxygen to deal with. The seizure lasted about 10 minutes and was quoted as being "impressive". Right when he started to come out a nurse picked him up and ran him down the hall to the front room where ambulances drop off the most critical cases. He was put on oxygen and cardio leads and once again, we were dropped and left alone. More than an hour later the same ER doc came in to tell us again that neuro wanted to send us home because there was nothing they could do. Mike called the neuro department and talked to them and magically 20 minutes later someone was coming down telling me they had a room for us upstairs.... Just to add, he had Ativan given just a few hours prior at the other ER, and they gave it to him again during his long seizure. He was pretty drugged up at this point, and it still wasn't stopping the seizures.

Waiting to go up.

We got up to our room and got settled in for the night which was pretty quiet, no real obvious seizures to me. The next morning the nurse told me he wet the bed and she changed him out in the middle of the night. This was somewhat worrying to me. He very rarely wets the bed, and when he does we sort of figure it was a seizure. But he had an apple juice before bed, so maybe it was just a fluke. I wasn't sure yet.... The seizures started coming back in the morning. Only now he was having a brand new one. It looked somewhat like an atypical absence seizures, but he would make a funny noise.... And wet himself which he has never ever done during a seizure. That day he had 4 of these episodes where he would wet himself. Neuro was still completely ignoring us. They told us they didn't want an EEG on him because they knew everything about his epilepsy... REALLY???? This was news to us. Sure wish they would share this info with us. Even with a brand new seizure they still said they knew all they needed and he wouldn't be getting an EEG even though in the last month his seizures have increased from a few a month to up to a hundred or more a day.

Still doesn't phase him!

Our frustrations were rising by this point. We were once again pretty much ignored for the rest of the day, and for the first time in years I had to put a diaper on my child to sleep in. The next morning he woke up and the seizures started and did not stop. He was having atonics, myoclonics, and absences back to back to back. He seized for 2 hours straight. I told every doctor on the floor, every nurse, everyone. I told them I needed someone from neurology down immediately and no one came. He quite literally had 200 seizures in 2 hours before an order was finally put in for Diazapam. Having an IV they brought in that form. Of course they go to give it and his IV isn't working. Great. So they ordered the rectal version that took another 20 minutes to be sent up. They gave it to him and he had 2 more seizures then they stopped. Nearly 2.5 hours later they did what I would have done instinctively hours ago. Someone finally came up from neurology and apologized. I was told his primary neurologist was out until Friday, and basically they wouldn't touch him without her telling them what to do. Well great, that's very helpful. Another pediatrician came in and apologized for how everything went. She said he wasn't continuously seizing for more than 5 minutes at a time and the order is to give diastat after 5 minutes... No, the order is 5 minutes straight or more than 6 in an hour. He was having 6 in 10 minutes. I was so fed up. I told them the diastat keeps his seizures away for about 72 hours and since they wouldn't do anything until his neuro came in in 2 more days I wanted to go home. There was no point staying there and keeping him trapped in a bed when we could watch him in the comfort of his home.

myoclonics and absences. They started small and not too frequently, and hour by hour got worse. Last night he was up all night seizing. It is very rare that he has seizures at night, and he was having clusters every time I woke up last night. He got up this morning and it's been non stop. If I told you my child had been up since 6:00 in the morning, and by 7:30 he had over 50 seizures you would probably think I was crazy. That's been our morning. We are living off rescue meds. It seems his regular 3 prescriptions he takes 3 times a day, 13 pills a day  are doing nothing. It's great that the rescue meds stop his seizures. The problem is eventually they won't because his body will get used to them so you're constantly questioning when he really needs them. To make matters worse we had a blizzard yesterday and we're literally snowed in. If I needed to get him to the ER I couldn't. I actually just said to Mike that I should probably hop in the shower and pick up the house in case I need to call an ambulance today. It's ridiculous to even have to think that way. The frustration, stress, and anxiety are very high right now. We're just hoping there is something positive laying in the near future for us.

The type of seizures he's having this morning. And yes, I give him cookies at 7:00 am!:
http://www.youtube.com/watch?feature=player_detailpage&v=39SAUg7JY_M

Rough Couple of Weeks

Ethan had been doing VERY well seizure wise. We actually went 4 weeks and a day between tonic clonics which is a new record! But after that he had 2 more within a week. Then we starting seeing the small jerks coming back. These are the same small jerks we starting seeing a little over a year ago. We had no idea what they were at the time as he was still only having tonic clonics then. At that time over the span of about a month those small jerks turned into clustering jerks, then clustering with loss of consciousness, then to almost non stop seizing all day. Unfortunately in the last weeks we have watched those small jerks come back, and now evolve into full myoclonic-astatic seizures with loss of consciousness. Basically they start with a drop seizure which has been knocking him to the ground which wasn't the case before, then the drops keep coming over and over, at this time it's about 10 in a row. Then it's followed by about a minute long absence seizure. He's unconscious the whole time. These have been happening several times a day now. The path things are taking is so similar to what happened this time last year, and I'm very fearful that we will end up where we were then. We were literally in the hospital every other week for a week at a time. We have an appointment on the 23rd with his epileptologist so I guess we'll see what the next move is then. It seems they always just want to throw more drugs at him. But these are the same drugs he's been on for a year+ that have never worked. I don't really know why they think increasing doses will do anything. I suppose they feel they have to do something, but it's very frustrating. There is a new drug that was recently FDA approved that we will be trying out though that's called Clobazam. It has actually showed promise in other kids with Doose, so we're hoping for the best!

 

Ethan has also completed his first 2 weeks of school! He loves it! He has a personal aid that says with him all day to keep him on track, and watch out for medical issues. It seems to be going really great so far! He shoves me out the door when I'm dropping him off because he can't wait to get in there and have fun! He seems to be adjusting well, and working on making new friends. He does have to wear a helmet when he's outside playing, but he doesn't seem to mind, and the other kids don't seems to notice. I guess that's a great thing about 4 year olds, they don't notice differences in kids yet. Taylor and I also have a great time when he's in school! We like to go out every day to play and run errands together. She misses so much one on one time because of all of Ethan's medical problems, so it's nice for her to have some time.

Ready for his first day!

 

So hopefully where the seizures are now does not get any worse, and we don't go down that road again. All we can do is try to stay positive, and realize that there will be ups and downs on this path!

Just because it's funny, can you see the squirrel he was trying to get??? He's going to have to be faster!