Wednesday, November 30, 2011

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:) And him loving on Ethan during a seizure. This video is graphic.

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!!!