Wednesday, October 12, 2011

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....


  1. This is beautifully written and so so sad. I'm crying. I am SO upset that Make a Wish can't do anything for you.

    I wish it would all stop. I just want to come take it away from you guys! I think about you daily, stay strong!

  2. Many hugs to you, mama. I wish so badly there was something I could do!

  3. Stay strong and the best of good thoughts are being sent your way!

  4. Taryn, Hang in there - you are a wonderful mother! Ethan is lucky to have you, his dad, his little sister and that incredible service dog. I hope that your little boy gets to the beach soon. I read about a non-profit called Miracles for Kids in the Orange County Register that arranged for sick hospital children to get a day at the beach - you can check it out here:

    Good luck and God bless you!

  5. My 3 year old has myoclonic epilepsy and although a combination of the modified Atkins diet, keppra and a ton of supplements are helping to keep him stable (not seizure free) we go through cycles where I've had all the same thoughts that you are sharing. You are not alone. I'm glad that you'll be getting a brief respite. I really hope that you're able to reach out for more help on a regular basis. When you are exhausted mentally and physically it is so hard to see any hope in the situation, but if you are able to regain just a bit of time for yourself, you may find enough energy to reevaluate (in tiny increments) if there is anything that is working. Trust yourself as a mother. Certainly some drugs can be helpful or even necessary, but our kids are treated like guinea pigs. If he keeps deteriorating under the present regimen, then there is no harm in changing it, or even eliminating something that is causing side effects and isn't doing anything positive. Work with doctors, but advocate for your child, and yourself. Sometimes what works best for your whole family is not what is medically indicated. Quality of Life is everything for these kids. Sorry if this comes across as preachy, that's the last thing you need. Just wishing I had a magic cure, and could alleviate all the suffering that mothers face.

  6. Thank you so much! Actually, it doesn't sound preachy at all, it's exactly how we've been feeling recently. Neurology wants to fix his brain, but what about Ethan as a whole? His quality of life isn't there at all. We've been speaking with doctors about trying to wean him to the modified atkins, and dropping some drugs. I'm sure they're doing no good, they never have.

  7. I just read your entire blog, and I am just bawling. My heart aches for you. I have no children, and I can't even imagine how many more times over your heart must ache everyday. However, it is so beautiful to see how strong you and your family remain throughout this. I pray SO hard that something will come along soon to give this sweet little boy (and you!) some relief.