Update on EEG

I finally got a message from the Dr. today about Hewitt's 24-hr EEG. She agreed that his diagnosis should remain MAE/Doose and not be changed to Lennox Gestaut Syndrome. We are thankful of this. Although they are similar, we would prefer to have an MAE diagnosis as the prognisis tends to be less grim for their development. Woo-hoo! Now we get ready for our appointment with the newest epileptologist next Friday and yet another EEG!

Things are going well!

We continue to withhold refined sugar from Hewitt's diet and things seem to continue improving. For the last week he hasn't had more than 10 seizures in a day. This is so encouraging. Our next move is to completely remove dairy and see if that helps more. We are pushing fruit, vegetables and smoothies to get and keep things moving in his digestive system. He has had some slowing in this area (digestive) over the last year or so and we're trying to be really purposeful with his food to keep things moving like they should be. That was the only other change we made this week. We ate A LOT of fruit while we camped in Wenatchee. God is good! It was a nice reprieve for our week of vacation...and, even if it doesn't stick it was at the very least, a much needed break from so many seizures.

Blasted Bubble Tea

We have done our best to cut refined sugar out of Hewitt's diet for the last 2 1/2 weeks. We hadn't seen any definite improvement initially. But we are beginning to wonder if it's making a difference. The last 4 or 5 days he starts out having a rough morning and then usually around mid to late afternoon things have slowed down and we hardly see anything for the rest of the afternoon and evening. But, yesterday was the first day of Hayden's vacation and we went out to eat to celebrate. After dinner we went to Bubble Tea...one of the boys' favorites. (fruit smoothies with fruity jelloish things at the bottom) We let Hewitt have one, and he only drank half. I can't even imagine how much sugar is in those things. This morning he had a short tonic clonic - mixed with something else because he was crying through the whole thing which has never happened before and it only lasted a minute. He hadn't had a tonic clonic for well over month. So, maybe there's something to the whole sugar intake thing. We're still letting him have natural sugars. (fruit, agave) I guess only time will tell.

Optimism or something like it

In my quest to be a more optimistic person I often find myself caught between looking at the bright side and telling the truth of what's really going on. Sometimes the two don't line up...these days the two seem to have a hard time meeting up around here. I guess what I struggle with is what exactly is optimism? Is it looking at the "bright side?" Is it having the "right" attitude about something...would it be saying "today Hewitt only had 100 seizures instead of 300." Or, would it be saying I'm so thankful Hewitt only has seizures and epilepsy and not a terminal illness? I keep trying to find this balance because it doesn't seem fair to Hewitt to compare what he's experiencing with something worse. There will always be something worse. But the fact that there's something worse doesn't change that his quality of life is significantly less than it was 5 months ago. It doesn't change that he has scar tissue build up over his right eye because he's hit that part of his head so many times from the drops. It doesn't change the fact that he knows he can't get up and walk around without his helmet on. He knows if he wants to get around on the hard floor he has to scoot on his bottom. Every time I see him do this without me telling him to, I want to scream. And, although it really is a blessing to me that he's not fighting me on it...I wish he was. I wish he wanted to get up and walk everywhere on his own without me holding his wrist, I wish that he wouldn't be okay with sitting in bed for a whole day hooked up to wires and being videotaped, I wish he hated his ridiculously large hockey helmet that protects his little face...I just wish he didn't have to do this. I want to take it away from him so badly and I hate that I can't. I just can't. So, part of me says screw optimism, why bother...there will be a day when I can look at life through those eyes again, but that day is not today. Today I'm sad and I'm frustrated that this has become normal for us. I don't want this to be normal. I don't want it to be my "new normal." But, I know I can't go through life this way, or even the rest of the week. It doesn't work, because I have 4 little boys looking to me for how to live and I certainly don't want to see my sadness on their faces. So, tonight I will lay this at God's feet once again, go to sleep, and get up and do it all over again. There will be a better day, a better week, a better month. I have to hope for that. So, maybe optimism does work. Maybe I just need to change my definition.

EEG

We are home from a long day and a half at the hospital. The EEG went great. Hewitt did an amazing job of hanging out in bed for most of that time. We caught at the very least 100 seizures, so we know the epileptologist should have a good read in the next few days or weeks. I will post an update when we hear. I don't know yet if it will change the diagnosis or not...at this point I don't really care unless it's to something more serious. We also had an opthamologist appointment today to rule out some more serious conditions relating to brain degeneration. PRAISE GOD! Everything looked perfect in his vision and his little eyes. The opthamologist felt confident enough to say he felt positive that there weren't other things happening. We were looking for signs of Batten's disease, and mitochondrial disorders... things that most likely end in death or severe cognitive changes. I am praising God those are not roads we will be walking down, and find myself being thankful it's "just" seizures right now I think I have had the most anxiety about this than any other test so far. I am thankful it is over and will be looking for news from the epileptologist.

We now have a third opinion scheduled at Swedish Medical Center with another epileptologist/neurologist. It is September 5th. After that we meet with nutrition at Children's on September 29th, unless Swedish can do something sooner. We are thankful we have so many options now. After speaking with the neurologist today I was feeling a little discouraged about treatment options and communication between us. So, a third opinion is sounding great. At this point we aren't changing anything in his treatment. We're going to start eliminating some possible food allergens from his diet, we've already started with sugar. The neurologist today suggesting adding a new med but we told her we'd rather wait for a diet and see how it goes. I don't feel a lot of confidence in meds at this point for the drops, absences and myoclonic seizures. Thankful they're stopping the tonic clonics, but not ready to get him all doped up again. Thank you for your prayers and support. I will be posting pics of the boys at my parents when I get a chance.

A Week with Nana and Papa

Tomorrow I am leaving, along with Hayden, and a small group of teens and leaders from church to go to San Francisco for a missions trip. We are leaving ALL of the boys at my parents house for the week. I brought the boys down to Olympia tonight so they could get settled with one of us here instead of dropping them off quickly in the morning. I wasn't originally planning on going but one of our leaders had to stay here last minute, so I am going in his place. We are really excited, yet apprehensive at the idea of leaving everyone for a week. Most of all, Hewitt and Titus. My parents are thrilled to have them for the week so that eases some of the worry. I know they will have fun and they are in good hands. But, we are driving and are 12 hours away by car...I have to keep reassuring myself that if there was an emergency I could get an emergency flight home and that it will be okay...it will be okay.

We had two fun surprises today. The first was getting to watch the Blue Angels diving and swooping and speeding all over the place as we drove through Seattle. It was so incredible to watch them, even just from the car. Traffic was slow, but what a great reason to actually enjoy slowing down for a minute. Our second surprise came when a fire engine drove down my parents rural cul-de-sac and stopped when they saw the boys out and let them have a tour! It was a brand new engine and they had a blast climbing around, sitting in the driver's and passenger seats, watching the lights come on, and when they left they ran the siren for a minute. It was priceless and a great way to start their week at Papa and Nana's! In all my anxiety, I can see God's blessing already coming through.

Please pray that we would be focused this week and be a blessing to those we are serving. Also for continued safety for our family and those on this trip.