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.

Pink Floyd and Billy Joel

God amazes me. I wish I had a better word then amazes, because I happen to use that when referring to all kinds of things. Like the great wash machine someone gave me that holds a ton of clothes...hardly the same playing field as God. Nonetheless, in my inadequate human terms, He is amazing. When all of this started with Hewitt, He gave me this adrenaline I'd never had before. I didn't really care if I slept, I didn't need or want a break, I just wanted to be near him all the time. I would like to think these are the maternal instincts He created me with. I had just never felt them quite so intensely. But, like anything that repeats itself for so long - I began to grow tired...maybe about a month ago.

I have been asking God for a break, for a reprieve, to lift my heart and soul. I didn't know what that was going to look like, but I was resting in His promise that He gives rest to the weary. (matthew 11:28-30) I had an older, wiser woman once tell me that as a busy mom you have to stop looking for the breaks all the time and trust that God is going to give them to you. He knows the burden we carry and He wants to take it from us. So, last weekend when our friends unexpectedly offered to take the kids I thought this is the break He has been planning. Praise Him! He is good. Friends we feel good leaving Hewitt (and Lincoln and Everett) with. Time away. Time alone. Time with just Titus. (a rarity) God provided physical and mental rest at a wonderful time. My body and mind have felt rejuvenated all week.

But, I'll be honest...as soon as we saw Hewitt again on Monday and saw him dropping and drooling and staring off...my heart was so heavy burdened again. I felt a little embittered at my break. I knew it was good, I knew it was from God, but I still felt so sad. All day long I am restricting him from things that every normal kid should be able to do...it's so exhausting. I feel like I'm withholding childhood from him at times...I carry this guilt, and I can see now, a brokenheart. Sometimes I don't know what to do with my brokenheart. It has come so unexpectedly, and I don't know how to heal it. I can't change what's happened to him and I have to keep doing what I'm doing to keep him safe. Tonight, God gave me something beautiful - and I think the reprieve my heart needed. It was very simple, and it might seem silly. But, we went to this fair with friends in Mountlake Terrace tonight. We sat in this field while live music played and all the boys were up and dancing, except Hewitt. Sometimes I can't even look at him when we're faced with these situations. I want to let him go so badly, but I don't want him to get hurt. We hadn't seen any seizures in a while, so we decided to let him get out of the stroller. We got him out and that little boy danced like I had never seen him dance before. (He was on super soft grass and he didn't have his helmet on.) He danced to Pink Floyd and Billy Joel songs with ladies he didn't know, he boogied all over the place. It brought so much joy to my heart and soul...I couldn't even describe the feeling, just watching him have fun, be a kid and MOVE around without someone holding his hand or anything. I felt like I was radiating within. And with that one little event, God is showing me He will heal my heart. He will lift my soul.

Psalm 147:3 - "he heals the brokenhearted and binds up their wounds."

If only...

We found this on a karate gear website. It would be so wonderful to throw on Hewitt and let him run around without someone holdling his hand.

However, it might be a little warm for the summertime.

So Far, So Good

I can feel my optimism returning and I find myself guarding it carefully. We had our appointment with the epileptologist today and my first knee-jerk reaction is to say it went wonderfully. She listened, took notes, affirmed us, and suggested the things we hoped she would. It was everything we had hoped for. But, as I learn, (ever so slowly) that I don't like to eat my words. I am going to tell you instead that things went nicely and "so far, so good."

She suggested a 24-hour EEG, so we are scheduling one so she can get a good read of what's going on. She questioned the doose/MAE diagnosis, but I don't want to react until she gets a better read. The other diagnosis she was leaning towards has a much worse prognosis. But then again, it's just a label for what we've already been dealing with. It won't change that. She also suggested that we try the ketogenic diet! We were very excited about this, as we would rather try it then go through the long list of meds that are out there. And, from what I've read, a good epileptologist would see this as a very worthwhile effort to reduce seizures. The only problem is that there is a 6-month waiting period for the diet, as it has to be initiated in the hospital. An alternative would be starting on the Modified Atkins Diet until we can get in. We are excited about this oppurtunity. From what I've read it does similar things that the ketogenic but is not as rigorous and will be easier on our family and especially Hewitt. Some people have had complete seizure freedom on this diet. We are hoping and praying for that!

So, that's about it for now. We aren't going to add any meds, which we are quite pleased with. Hopefully we will be seeing a dietician soon. If we don't, I'd like to start him on the MAD diet on my own. It seems very manageable. I am thankful for all of the people that have been encouraging me to follow my instincts as his mother. Hayden and I have made some hard decisions the last couple weeks regarding meds. But, each time we've made a change we've had a complete peace about it. Even now, I feel hopeful again. He is still having seizures, but I feel like we have some alternatives other than doping him up on drugs. Not that the diets are without possible side effects, but he should maintain his cognitive development on them.

We went to the park for the first time without Hayden today. We had a friend and her 2 boys with us, so that definitely helped. It was hard. He was having a hard time walking for some reason and was spacing out a lot. He also had his hockey helmet on which makes him stand out ever so slightly ;-). But, he didn't get hurt, and they all had fun. Mission accomplished. We are going to try to do everything we can to maintain a "normal" childhood for him. Sometimes I think the obstacles lie with my own issues than they do with his. Letting go is hard. I am thankful for today. I notice I am smiling easier. I think the break we got this weekend was just the rejuvenation I needed to face this with a little more fight than I have been.

Some Time Apart

As I write this, I sit in my quiet and empty house, only hearing the quiet snore of Hayden taking a little nap!

Friday, we went up to Bellingham to visit with a family from our old church who recently lost their father/husband. Hayden has the honor of leading the memorial service this coming Monday. We had planned to drop the boys off with some other friends while we met with the family, and right before we left town, she called back and told me we could leave the boys for the weekend if we felt comfortable. I told her I would bring their stuff and think about it on the way up.

The longest we've been away from Hewitt since this all started is a few hours for a couple date nights. Now we had the opportunity to leave him for a whole weekend...a choice that's hard even when your child isn't having these new medical issues! But, we trust this family, they've watched our boys many times before this all started while we've gone on weekends away. I don't know if they fully understand what they've signed up for and how much of a blessing it is to us to get a mental break from all of this. They have 3 older school-aged children and it is so sweet to see them all play and get along so well. They are very dear to us. So, he is having a blast, doing okay. He hasn't had any big ones and I keep my phone with me constantly. This is good. (i keep repeating to myself) It's good for Hayden and I. We kept Titus with us, but just lined up a last-minute baby lover from our church to take him for the night...WE HAVE A NIGHT IN OUR HOUSE ALONE! We'll probably end up doing something really lame like cleaning it or playing video games or something...but, whatever we do, we'll be together, alone for an evening and that is wonderful. It's something we need to do for us and for our kids. So, I am going to quit being lame, get off the computer and take my husband out for dinner!

Botched EEG

Part of the joy of seeing Hewitt come back to life also means enduring his major temper tantrums. Which he decided to show the eeg technician halfway through his appointment this afternoon....I don't know if she got enough read for the neuro. It was extremely frustrating to take the time to get down there and then have him lose control. But, we are still rejoicing in the fact that he is "back." Even if it means with an attitude. He is using his imagination again today...such a joy!

EEG tomorrow

We will have our first EEG tomorrow at Children's. We will then have a follow-up and first time appointment with an epileptologist on the 23rd. We expect to hear the results then. We have weaned Hewitt off of his zonegran, the 2nd med we added. It has been over a week and we have seen a vast improvement in his speech, motor skills and other things he regressed on for the last 3 days. We are encouraged, and enjoying having him back. We started the wean of his depakote (the 3rd med we added) today. This is the med that has increased the dangerous drops. We feel hopeful about taking this away, but know that it might increase another seizure type. But, it will be one that is less dangerous. This is our hope. Please pray for him that he won't have any dangerous withdrawal seizures from the wean.

Short Update

Despite our concerns about Hewitt's increased seizures we continue to be turned away at Children's. Last Thursday one of his legs started freezing up and he could hardly walk on it. I took him in to the ED with the concern of that and the amount of seizures he was having and they sent me home without an explanation and without an evaluation from a neurologist. We are really frustrated right now. We are trying to focus on the positive though. We were told they wanted to schedule an EEG at Children's this week. That might expedite the process a little bit. Otherwise we will wait to see an epileptologist on July 21st at Children's. I am still concerned about his leg. It is acting up again today and we have no idea why. It seems like to me it would be something you would do an EEG on WHILE it was happening, just in case it is a focal seizure...I don't know if it will still be happening later this week. His neurologist in Tacoma wanted to add a fourth med to take care of it WITHOUT even seeing him to evaluate him. I refused to do that as we're seeing a new Dr. in a couple weeks. Thanks for your continued prayers. Please pray for patience for us. Also, for Hewitt's leg. I keep having these visions of it being something really horrible and him losing his ability to walk or something. It's just scary. That's probably not a possibility, but with everything else going on, it would be nice if his legs worked properly! We're out at camp this week so hopefully it will be a good breather for all of us.

Enlightenment in the ED

I took Hewitt into the emergency department this afternoon because of an increase of seizures. On a typical visit to the ED, I sit in the waiting room, looking around me at the sick kids, wishing that I was there because Hewitt was sick, or broke something, or had any number of ailments that come and go in childhood. I sit there feeling sorry for him and sad for us that our lives now include a "chronic medical condition." I look at those parents and I think if they only knew how fortunate they were that it's only rota virus...(bear with me, I am learning). As I sat there today I watched a woman come in with a stroller. Her little girls feet were hanging out the end and I could see her cute little shoes and leggings. The rest of the stroller was covered by a blanket because the girl was sleeping. I sat and watched and wondered why they were there. Eventually I went back to my pity party on the couch with Hewitt. The next time I looked over the blanket was off of the stroller and the little girl was looking at us. She might have been 2 or 3, but I don't know for sure. Her sweet little face was obviously disfigured, with droopy eyes and her head shape was not that of a typical little girl. At that moment, when I saw her sad eyes and misshapen head I was overcome with shame. Who am I to look at these people and think that my pain is any more significant than theirs? I would never had said that aloud, but that is exactly what I was doing. Have you ever had one of those movie like moments where you imagine yourself standing in the middle of a freeway and all the cars are flying by you and you can't see any one's faces...but then suddenly things go into slow motion and you begin to see people's faces and realize you aren't alone and that although life is whirring by in the midst of everything we are constantly surrounded by people dealing with their own problems, trials, victories, etc. This was one of those moments. And, while I have seen these people before, I have never felt their pain. And though life continues to whir by me, I feel like my eyes have been opened to something I've never seen before. There is a whole world of parents and families out there dealing with loss. Parents that are stricken with fear, pain, bitterness, anger and sadness. Parents who did not get the child they hoped for, or had that child taken by some illness or accident. These parents need support. They need love and they need hope. I have access to that hope. The hope that will change their lives if they let it. So, now I am asking myself what I am going to do with all of this pain, bitterness, anger and sadness in my own life. How am I going to translate it into something tangible that can glorify God and draw His hurting children to Him?

Moral Support

Brought the older boys to Children's to pick up Hewitt's helmet and they had a lot of fun trying on the helmets in the room. The one Lincoln is wearing on the right is actually like the one we just got for Hewitt. He FINALLY has the right helmet. They made the whole helmet process much more lighthearted for me and "cool" for Hewitt.