Roller coaster

Another week gone by and another week of fighting colds and tummy bugs and the seizures keep creeping in. I've been really discouraged all week by this return of seizures. He had probably 20 today and 2 big ones already this week. I keep hoping it's just a little tummy bug that Titus seems to have too, but I don't know for sure, he has minimal symptoms. This has me guessing whether or not the diet changes are really going to be the ultimate answer for him like I hoped they would be. They aren't enough to keep all of them away, so we need to figure out what our next step will be. I can't believe it, but I've been considering adding a new med and seeing how it goes. I have been doing a lot of reading the last couple nights about some more recent research on MAE and they in the medical articles they narrow down the treatments that seem to be effective for kids with it. I think we need to be open, there's still a couple drugs that aren't as heavy duty that we would be willing to try. This article affirmed that for me, so now I think we just need to wait out this illness (or maybe winter) and decide what to do next. It has made me realize that it is easy to become complacent with "just" a few seizures a day. I need to get back to fighting any and all seizures. It's not fair to him for us to settle for anything less.

I have tried to make an effort not to overthink things with this. If I get all stressed out and worried it doesn't help anything, especially him. But, this week, seeing more drops...watching him fall 2 feet away from me and not being able to catch him has been pushing me back down that road. Everytime he gives me his sweet smile and I see his little gray tooth (that's gray because he fell on it) it's a reminder of the battle he's in. His behavior continues to decline and I often don't know how to deal with it - which leaves all of us frustrated. This week, the idea of a seizure dog has popped back into my mind. I can't help but wonder if it would be a good distraction for his horrible behavior. Only problem is these dogs can cost up to $15,000 depending on what company you go through. But, lots of people do fundraisers to cover the cost of it all. So, I will research and see what I can find.

Brain Frustration

So, for the last 2 weeks now Hewitt has had a slight increase in seizures. It started with one big one and then he's been having drops about 5-10 times a day again. Sometimes they're not as violent as they used to be, and then sometimes they're really hard. He's really resisting wearing his helmet again because he hasn't had to wear it for a while, but now we need him to for his safety. The first week I thought he was fighting a virus, Titus had a really bad cold. But, now on the second week of this I'm not sure what's going on. We talked about taking gluten out, but it isn't a noticeable trigger like the other two diet changes. So, I think I'm going to need to start a food journal and be really committed to recording everything that's going on so we can look for some patterns somewhere. He's been really onry again, but then also very sweet on the upside of things. I don't want to have to do introduce any new meds, so I'm praying that God would show me something else that we can do here to help him.

On a different note, below is a link to an article that was just released about causes of epilepsy. It's a study done in Italy and is talking about the immune response. It's really encouraging because so many of our parents can see this obvious change in our children's seizures when their immune systems are compromised, but without much explanation from the Dr.'s. This makes sense and it's exciting to think they might have a new method of treatment in the future.

http://news.yahoo.com/s/nm/20081124/sc_nm/us_epilepsy_3

Feeling Blessed

Yesterday on my yahoo group for parents with children that have MAE I requested parents to all chime in and say where they are at and what their experience has been so far. I'm still fairly new to the group compared to some people that have been on there for years and thought it would be helpful for all of us to hear other people's stories and share our own. One of the things that is most encouraging when you're in the fire with this is to hear from people that are on the other side of it. Or, even from people that have learned to cope and live with it daily.

I wasn't prepared to read all the responses. There's been a good amount of parents chiming in their stories and I'm so grateful, but it's hard to read the stories sometimes. I've only read about 3/4 of the stories so far, many with tears and understanding and some with awe and a heavy heart.

I say this with some reservation, mostly out of fear of sounding redundant and like a cliche. But, I sit here tonight amazed again at God. I just feel so blessed that we found something to help Hewitt. He was doing so bad. So incredibly bad, we had lost him for weeks at a time, only getting glimpses of "him" for minutes at a time. I really believe that God led us to where we're at. He unsettled my heart with all the meds. He led me to information on diet changes. And, while some people might argue that it was God who made this happen to Hewitt to begin with...I praise Him for giving me my son back. For getting to watch him play on the playground again, walk like a child without a disability, talk and use his imagination, he even remembers what kind of car one of his church teachers drives right down to the color. I have this beautiful, thriving boy. (I have 4 for that matter) And 2 months ago, he was still beautiful, but he was a mess and hurting so badly and I was terrified for his future...and while I still worry about his future, it's a lot easier to deal with today and enjoy what we have right now. And, although we are not 100% seizure free, I think we have found something and when we're diligent enough it seems to be working.

My hearts go out to the families that are dealing with this weeks, months and years without relief, or the ones that might have had a time of seizure freedom and then had their hopes dashed when the beast returned. We might be one of those families someday, but today my prayers and my pleading are for them and all they have to deal with today and my thanks go up for our Hewitt and our miracle.

Baby steps

So, things have simmered done slightly around here. The massive screaming, hitting, kicking, biting fits have calmed down a little bit and we are able to do normal things like get dressed in the morning. I feel like I'm able to see what sets him off a little better so I'm doing my best to avoid those confrontations. Although, sometimes it's impossible to avoid them when it's something like Hewitt throwing his couscous all over the kitchen table and floor making a huge disaster and my least favorite thing to clean up - pasta. Some things I just have to put my foot down on. But, it seems like the fits aren't lasting as long and with the threat of losing a toy to the garbage can he usually snaps out of it.

I had a very encouraging moment yesterday as we were driving in the car. We drove by an office that we drive by all the time. About 5 months ago I had an appointment at that office and I brought Hewitt in with me. He was doing really bad at the time, dropping, drooling like crazy and really out of it cognitively. Hayden ended up coming in to help me out because I had Titus with me as well. On our way out we ran into someone in the hallway that had a rat and he got to see it and pet it. Yesterday as we drove by Hewitt said "mommy, do you remember that place we went" and he pointed to the building. "remember how I went there with you, and Daddy came, and we saw the rat?" I know this probably sounds really trivial, but it was such an encouragement to me. At the time it happened I wouldn't have thought he was cognitive enough to even remember it at all. And, now, 5 months later he is pulling it out of his memory somewhere. It was amazing and it completely made my whole afternoon. I love how this diet is giving him enough of a break from all the seizures that his mind is able to work again like it's supposed to. He even did a page out of his preschool workbook this week!

It's little steps, but they're in the right direction.

The New Black Cast

Just in time for Halloween, he picked a black cast.

Help

This last week has been a really rough week for Hewitt behaviorally. His seizures are still very minimal, but there has been a big change in him and we aren't sure why. He has made almost everyday this last week SOO difficult. I'm exhausted and at my wits end by naptime and not really sure what to do with him. He seems to lose all sense of what's normal and acceptable...you know the built in filters we all have that help us make decisions about things: it's like they're suddenly gone and he's freaking out about everything and being aggressive toward his brothers, even Titus. It's beyond his normal challenging of authority...it's something different and I hope to get to the bottom of it. He's also been having strange pains in his left arm and leg and we're not sure what's going on there and if it's related to anything. He had a different kind of seizure on Sunday than we've ever seen before and when it was over he couldn't move his left arm for several minutes even though he was awake and aware of what was going on.

Please pray for wisdom for me in dealing with him. I really feel like something else is going on and it's not just him acting out. Thanks.

The Cast

Hewitt got his cast on yesterday and was so excited. He thinks it is so cool and he got to pick out a very nice shade of blue! We also found out yesterday that he actually broke both wrist bones. Ouch! They call it a buckle or a torus fracture, so it's not a complete fracture of the bone. One side just buckles. It should heal quickly. He'll have this cast on for two weeks, then they'll take it off, re x-ray and hopefully put a short one on.

OB/GYN Elephant

This mural was in the wall of Hewitt's room in the ER last night. I can't decide how to describe it...disturbing? creepy? inappropriate? humorous? It's just wierd. Not really sure what they were thinking. It gave us some good laughs while we were there though.

ER=Second Home

Tonight we were at a friend's house and Hewitt was playing on the stairs with one of the kids. We hadn't seen a seizure ALL day. At some point, he either got pushed or had a seizure and tumbled down the bottom couple stairs, doing a flip/somersalt and broke his arm in the process! So, after 20 minutes of crying and being unable to calm him down or distract him we decided to take him in. Sure enough, an x-ray showed he had a break, they splinted it and sent us home. He will get a cast in a few days. About all I can say is, ERGGHHH.

Here he is on the way home, feeling much better.

Amazing!

I am sitting here this morning trying to do some school with Lincoln and Everett and I am completely distracted. Hewitt has been running around the house like a little madman, asking to use the potty, wearing underwear, walking on his tiptoes and sliding around in his p.j.'s. I just called Hayden to tell him and I got all teary about it. It's just so amazing how far he's come in such a short time. I am simply AMAZED and so thankful to have him back.

Catching up

We had our appointment at Bastyr on Monday evening. Things went well, the care was great...but we didn't seem to make much progress or change much about Hewitt's treatment. They did a little bit of craniosacral therapy which was interesting. They recommended some supplements that I could've been doing on my own. They're ones that are talked about in a lot of different naturopath pages. I didn't buy any of them, they were Vitamin E, D and some B vitamins as well. I'm not sure what I was expecting...maybe a little more explanation as to their perspective on why this is all happening. They agreed that the removal of the refined sugar and dairy was a good move and we talked about getting further food intolerance testing done to see if anything else is irritating his system. So, that was the extent of that. I have an email address for the Dr. we were seen by. I think I will email her my concerns, observations and ask if she knows of any studies done. We saw two students initially and she closed things up at the end of the appointment. I asked the students about the research but they didn't have much for me. Maybe the Dr. we saw will!

The American Ideal

In church, we've been learning through the book of Mark. This week we were in Mark 10:35-45. It's this passage where two of the disciples come to Jesus and ask if they can sit as his left and right hand in heaven. I missed the message yesterday because I was in the nursery, but we have small groups Sunday night to talk about the message. As we reviewed the passage and our responses to it, God impressed something new upon my heart. Typically when I read this passage, I think about how arrogant the disciples were to think they would get to sit on Jesus' right and left side. Why would they think such a thing, and then be stupid enough to verbalize it? Reading through the text again, Christ makes a reference to the rulers of their time. He points out that those that rule over the gentiles lord it over them and the high officials exercise authority over them.

As we discussed the passage we all automatically criticized the disciples. But, I couldn't help but think that they were somewhat justified in asking what they did. They gave up a lot to follow Christ. They left their families and jobs. They dedicated their lives to following Him and teaching others about Him. They believed He was God's Son and I'm sure from their perspective they thought they were pretty fortunate to be a part of this "inner circle" with God's Son. In their time I think this would've been the natural progression for someone in their position. They loved Christ and wanted to be by His side. The next thing that God laid upon my heart here was this...they expected something like this because of what they were used to seeing. I can't help but think about us, in America. We have this American ideal that our lives are measured by. When part of our lives doesn't line up with the American ideal we feel like something is off. The funny thing is that for the majority of the world there is no "American ideal," there is survival, and so many of the things we (Americans) care and worry about would fall away if our basic needs weren't being met (including the luxury of safety). Two of the areas I was really convicted in were: Hewitt (the obvious one) Having a sick child does not line up with the American ideal. Homeschooling was the other one. I have so many great memories from childhood that stem from traditions or "normal" American things to do. This was one of them. At the beginning of the school year I was really struggling with not sending my kids off and letting them have that experience of going to school. I have had to remind myself that God laid this on my heart for a reason. That homeschooling fits our lives and our children better this year, and that's okay.

I could probably think of a hundred things in my life that I measure by the "American ideal" and not by the Bible or the fact that God created me as an individual person and an individual path apart from the expectations my culture puts on me. I love that Jesus doesn't rebuke the disciples in this passage when they ask. He points out to them that they are going to be different kinds of leaders. That they are going to be counter cultural. He says, "whoever wants to be great among you must be your servant, and whoever wants to be first must be slave of all. For even the Son of Man did not come to be served, but to serve, and to give His life as a ransom for many." This is so beautiful. Christ was so radical in His time. The secret rebel in me loves these passages that point out how radical He was. He was telling the disciples to go against their culture and serve people, not to put themselves first. I think today this is still counter cultural. I guess I will be asking myself this week, by what will I measure my life and my experiences by? It's funny, it actually seems easier to not measure it by the American ideal right now because there are a lot of things in my life that don't measure up!

Sorry Sarah

We had a leadership retreat for church over the weekend so we had to leave the kids with other people, yet again!! So, this time we split them up, and Hewitt and Titus stayed with friends of ours that also have 3 & 1 year old boys. Lincoln and Everett came with us to camp and stayed at the Mallory's. It was nice to have someone along. After dropping Hewitt and Titus off, I went home, packed the other two and us up and left to head out to Camp Gilead, where the retreat was. Just before leaving town, we got a phone call from my friend. It hadn't even been 5 hours yet and Hewitt had already injured himself. Ergghh. He had been having such a great week so I wasn't making him wear his helmet. He had a random drop that afternoon and cut his head on a toy! He had to go to the er for stitches - but ended up getting glued! I felt so bad all over the place. I felt bad for him that we weren't there to comfort him, I felt bad for our friends for having to deal with an ER trip on a Thursday night, and of course I felt bad for myself because I don't like to let other people do things for me. :-) Everything was fine, he did great! He has this great purple glue on the cut and everything is fine. And, some wise woman told me that I need to let people do these things for us because it's good for other people to be able to serve and bless us this way. I had to agree. It was such a blessing for them to take the boys when they have 2 of the same ages at home! I don't envy having 4 kids 3 and under! We were definitely thankful of their willingness to have Hewitt and Titus for the weekend. Praise God for good friends!

Appointment with Dietitian

We had our appointment with the dietitian yesterday. I wasn't sure what to expect going in, because we've seen such good improvement with what we've been doing we didn't know what else she would help us with. He is still having some lingering seizures, most of which come from deciphering which sugars are okay, or him eating something with dairy. Because of these, she wanted to just keep going down the road we're on instead of starting a whole new diet. I appreciated that because it seems silly to do something totally different when what we're doing is working! We still have our appointment next week at Bastyr as well, so hopefully between the two we'll come up with a good plan. For now, she wants me to cut ALL kinds of sugars out, not just refined, reduce his carbs and up his fat and fiber intake. I'm still trying to decide if I want to do this yet. Things seem to go really well as long as we're careful about what he eats and we keep him regular. He already has so many restrictions as it is, if we don't have to restrict more it would be really nice. On the other hand, if the seizures pick back up again, we'll gladly make changes and see if it helps.

The dietitian was nice, well organized and knew her stuff. I still couldn't get her to recognize the significance of the changes we've made and the results we're seeing. That was frustrating. But, hopefully next weeks appointment will be more helpful.

Hewitt is continually improving cognitively. His memory is functioning much better and he just LOOKS brighter and healthier. It's an amazing blessing and I'm so thankful for God's timing with all of this. I can't imagine trying to home school the boys and keep Hewitt safe from all of his falls!

Bastyr

I FINALLY made the call to Bastyr University today. It is a natural medicine university in Bothell that has a great reputation and is respected in the medical community. They were able to get Hewitt in on October 6th with one of their physicians! We are really excited to finally talk with someone that will at least acknowledge that nutrition is affecting the seizures and get their input on our changes and hopefully even lend an ear to all of my research findings. My desire is for a medical student or a physician who does medical research to see the importance of this and take it on as a research project. I know it might sound far fetched, but I don't think these discoveries we've made are meaningless. Especially when there are so many children suffering from this same syndrome. So, between now and October 6th I need to conduct another survey on my group of parents (or about 20 other parents with non-doose kids) and have them answer the same questions for their non-doose children. I want to have this all charted out when I go in and I think it will hold more weight if I have a control group to compare it too.

Hewitt is still doing well, although he did have a few seizures last night and today after we accidentally gave him vegetable broth that had sugar in it. It's crazy. I have been saying for the last few days that I don't know if it's really the sugar/dairy connection...maybe it's something else. It's not something you really want to test out though because who really wants to see another seizure? So, when he had one at the dinner table we were scrambling to see if he had eaten one of those two things...and sure enough, he had. We had another opportunity to test our theory, this time involuntarily. I believe it now though.

By the way...there is sugar in EVERYTHING! It's really quite ridiculous.

My Infinite God

Two weeks ago at church a couple friends of mine sang "Great is thy Faithfulness" inspired by another mom at our church who just found out she has cancer and just started all of the chemo and process of fighting it. I found it slightly ironic it was the song my friend, Sarah picked. When all of this started with Hewitt I stopped sitting downstairs with Hayden and the boys and started sitting in the balcony by myself to be closer to the nursery. (I didn't want to be more than a few steps away if something happened). It was kind of like a safety net, but it was also a place for me to have it out with God every week as I tried to sing worship songs to Him, but I was so hurt and angry, half the time I just cried. This song, in particular, I couldn't get out.

The words:
Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.
Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see. All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!
Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.
Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

I didn't feel like God had compassion on us, I felt hurt, helpless and alone and I couldn't see beyond my today. I certainly didn't feel like I had strength for the day or hope for tomorrow - I just wanted to turn the clock back and for all of this nightmare to go away. I wasn't looking at it from an eternal perspective. I wasn't trying to see God's purpose in it, I didn't even care. I just wanted it to stop.

I sat downstairs and sang this song 2 weeks ago and I sang it with all my heart to God. And, although I can't say now that I understand why God let this happen to Hewitt, and I probably never will. I can say that I am learning things about God that I thought I already knew. I always knew God was bigger than me. I didn't always process the fact that in that bigness, He is going to do things that I don't understand. I have missed that the way I process things in my finite mind doesn't compare to how His infinite mind works. So, while I process this experience with human understanding, God sees it with God understanding. Something I will never see while I'm on this earth. So, instead of trying to understand why it's all happening, I am resting in the promise that God does have a plan for my life and a plan for Hewitt's and that plan is better than mine!

and Hewitt has been seizure free for the last 2 days again.

Epsilepsy

The last few days Hewitt's interaction has been so encouraging. I think I had forgotten so many of the things he was doing before the seizures hit. He's been saying some funny things. I think one of the cutest comes when we're reminding him to put his helmet on or sit where the blanket is at the table. He says in a very matter-of-fact, (and assuring at the same time) voice - "I have to wear my helmet because I have epsilepsy and I might fall and hit my head." or " I need to have this blanket here because I have epsilepsy and I hit my head sometimes." I love the EPSILEPSY. It's so funny...we can't even correct him, because it's amazing that he is even trying to explain it to us. He's been so bright, talkative, imaginative and fun this last week. We have been praising God for this change.

starting a new count

So we broke the streak. Hewitt had this tiny little seizure in bed with me this morning but then didn't have anything for the whole rest of the day...I wish I could just pretend it didn't happen, but I can't. So, we will start our count over. (hopefully tomorrow) He is getting fiesty again, so I think this is a good sign? I say that with a question mark because it seems like he does this as he's coming to cognitively. We moved him into Lincoln and Everett's room today. I am praying that this will be a good move and he won't just be the pesky little brother.

Day 3 and counting!

Another seizure free day! It's getting harder to get him to wear his helmet and scooch on his bottom when he's not wearing it. I want to let him take it off, but it's all still so fresh. He still has a slowly fading black eye he got last week from dropping on the toy box...it just doesn't seem worth it yet. Now that I think about it, wasn't I just wishing for him to care about the helmet a few posts back? God knows our hearts!

Teriyaki

We took Hayden to Ichi Bento for lunch today. (It's a local teriyaki place). While the kids and I waited for him in the parking lot, the following conversation manifested. I should note, we were listening to the Christian radio station.

Lincoln says in a sincerely syrup sweet voice "Mom, do you know what my favorite word is? It's Christ. Christ is my favorite word."

Everett chimes in, obviously trying to one up Lincoln: "Mom, do you know what my favorite word is? It's God."

Hewitt eagerly joins the conversation: " Mom, guess what my favorite word is?" long pause "my favorite word is" another long pause "teriyaki"

And, that, in a nutshell is Hewitt. He wants to be a part of things, but could care less if he's different. This serves him well these days as he eats much differently than the other 2. I'm sure it will serve him well in life! I love it about him. These guys are so funny. I wish I had something where I could just secretly record some of the things they randomly say. In their pursuit of Godliness, and learning "how" to be a Christian, I love hearing what comes out of their mouths!

We are at the end of our SECOND seizure free day! Woo-hoo.

A lovely day

Today, Hewitt had his first seizure-free day since the beginning of May. And, while 4 months may seem like a long time to wait I know many people that wait years for one day without something! So, we are thankful and hope it continues.

the zoo

Monday, Hayden and I left for Cannon Beach, Oregon. We wanted to spend some fun family time together before we left so we took the boys to the zoo on Saturday. We had a great time exploring and seeing all the animals. There's so much to see, it's more than a day trip especially with Hewitt and Titus' ages. We've talked about getting a zoo membership, but I think this solidified it for us. It would be nice to go and take in a little bit at a time so we could really enjoy it all. Hewitt had a great day and only had a couple drops all day! It made for such a relaxing time. The boys are staying with my parents in Olympia and we are at Cannon Beach Conference Center for a pastors and wives retreat.

We look forward to going home tomorrow and seeing them. It's been nice to be away, but they ended up being sick while we've been gone, so we really want to get back and see them all! It also seems like we've been going a lot for the last couple months and for once, I actually want to be at home (i'm not much of a home body) and I'm looking forward to the routine (something else I resist) of school, AWANA, things returning to a schedule.

Pray for Hewitt that he doesn't catch this tummy bug his brother's got. I had it the first day we were here and it was miserable. An hour after we left my parents house we got a call and he had a big seizure. The first one he's had since the end of May! A lot of times kids can have breakthrough seizures if their fighting something or sick. I'm hoping his body already fought it off and he doesn't have anymore! So far so good. He hasn't been sick once since this all started so we don't really know how he would react to illness if he gets one. I know it's bound to happen, but I'm happy to avoid it if at all possible!

The Appointment

Oh boy...where do I begin? I will do my best to control my virtual pen here as I share about our appointment today. Should I start with her lack of interest and friendliness with me and especially Hewitt? Maybe I should start with her condescending way of sharing information with me...or maybe I should just say it was NOT AT ALL what we were hoping for and leave it at that. In summary, everything I listed in the last post she was the exact opposite of. It couldn't have been farther from our hopes. So, now what? I am thinking maybe I shouldn't expect anything more form a Dr. specializing in this field. Maybe I should be looking for a more naturopathic Dr. like I've thought and talked about doing for so long and haven't done yet. Maybe this was just the push that I needed to do just that.

On Hewitt's end of things, he did amazing for his EEG this morning. He cooperated beautifully and things went smoothly. This afternoon he wasn't as cooperative, but I wouldn't have been either if I were him. She didn't even say hello to him when she walked in the room. She hardly acknowledged his presence, with the exception of staring at him like he was a parasite everytime he butted into our conversation like any normal 3 year old would do - bored out of his mind sitting in a Dr.'s office. I almost welcomed his fiestiness with her. I think I would have been sad to see him be nice to someone who was so rude to him. WHY WHY WHY do some adults not get that children are deserving of the same kind of respect that they are? And 10,000 times more WHY would you specialize in pediatric epileptology if you don't especially care for the little guys presence? It makes no sense to me whatsoever. Remember, this is me under control talking about this woman. NEEDLESS to say, we will not be returning to see this Dr. for Hewitt's care. We might try to get back in with her partner. But, for now, I think we'll continue with diet and if things start to get really bad then we'll reconsider an epileptologist. In the meantime I have a number of a nutritionist in Redmond that I will be contacting asap!

Thanks for your prayers. Although it didn't turn out like I had hoped I really believe it was because God has something else for Hewitt. Maybe another Dr., maybe another route entirely. We shall see!

still doing well

Tomorrow is the day we were supposed to go see our third pediatric epileptologist in the area. As it turns out, he's sick. He does, however, have a partner and we have the opportunity to see her tomorrow instead. It's not quite what we were hoping for, but we're trusting that God knows best - and leaving it at that. I do have a couple prayer requests for tomorrow.



The first: They have requested ANOTHER EEG. It's at 8:00 in the morning, he has to be sleep deprived and it's downtown Seattle at Swedish. We've got a few things working against us. First of all, they asked us to get him up 4 hours early...that is absolutely not happening. What on earth would I do at 3:00 in the morning with Hewitt that could possibly keep him awake? Our plan is to keep him awake as late as we can and then wake him up at 6. I don't think he'll have a hard time sleeping. But, this is the 3rd EEG he's had in 2 months, so I'm hoping he won't be too weary of it all! Also, we'll be in prime traffic time, so we're going to have to leave pretty early and he CANNOT fall asleep in the car, but only one of us can go, so that should be interesting. After the EEG, we come home and then go back downtown at 2:00 for our appointment.



The second request is for our time with the epileptologist. After our recent diet changes and results I am praying for someone that will be open to what we've discovered, and a desire to pursue why it's worked. We really hope we can help other people with this discovery. Our heart's desire is to have a physician that will see Hewitt as a person - a child who is hurting, missing out on a lot of life, and have compassion for him. We are hoping she will be a person that isn't so caught up in her knowledge that she isn't open to learning something new and someone that wants to work with us, not just tell us what to do. WOW! Not a whole lot of expectation, right?! Maybe I should print that out and take it with us...did I mention I was hoping for her to also have a cure for epilepsy that didn't involve horrible medicine? It could happen. Thanks for your prayers. I will update again after the appointment and EEG.

Figuring things out

I strongly believe that God gives us peace about things when we need it...when we need to be okay with our circumstances, or a decision we've made...since this began in March, I have been searching for that peace in many different areas. Our decisions about Dr.'s, medicines, treatments, etc. I have received peace in those areas as we've sought new options, treatment, new Dr.'s and taken him off of some of his meds. One thing I have never had a peace about is the origination of the seizures. There is so much about seizures that the medical field doesn't know yet. There is a large percentage of people that have epilepsy that have no explanation for why. So, although Dr.'s are pathological and pharmacological by training, when it comes to seizures (and i'm sure other things) the only explanation they can give is that there isn't one, and then prescribe us a med to stop them. Maybe if that first med would've fixed everything I never would've questioned any of this. But, it didn't. So, here I am 6 months later, unsettled and looking for answers.

A couple weeks ago I posted a survey on my yahoo group for parents with kids that have Doose. I asked them a lot of questions about what their kids are eating and if they have any external symptoms that they might not have thought to relate to what they're eating. For instance, Hewitt has huge tonsils, sounds nasal (most likely swollen adenoids as well), is constipated a lot and gets eczema when he has a lot of dairy. I've been doing a lot of research and discussion with a friend of mine that knows a lot about the effects of diet on our bodies. A lot of things Hewitt's Dr. has no problem admitting she doesn't know much about because she wasn't trained in it. I got over 20 responses and about 90% of the kids eat a lot of the foods I asked about and have one or more of the symptoms asked about! I was pretty blown away by the results and I'm now researching and praying about what to do with them.

We cut dairy out about a week and a half ago...hadn't seen much change in the 10 or so seizures we were having. Well, today - as I write this at 4:00pm I can say that I've only seen 1 seizure today. ONE! It's amazing. I still want to make sure it's diet, but feel pretty sure that they're related. After a few weeks without dairy, we'll reintroduce it in a small amount and see if it makes a noticeable change.

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.

Settling In

After these last 3 weeks of intense seizures - mostly drops, I feel like we're starting to settle in to some kind of pattern or normalcy or something. I don't even know what to call it. I don't think I'll ever get used to watching my child randomly space out, fall down, throw things, etc.. I want to fight for him to stop having seizures and stop having side effects from medicine. But, I am no longer crying every day as I watch him. I am no longer letting myself fast forward 2 years to when he'll be starting kindergarten. What I am getting used to is how I need to respond to his seizures and side effects. I know now he needs someone to hold his hand when he is walking around on a hard surface, he needs to wear his helmet on hard surfaces, he has to be harnessed when he's eating at the table, he can't be in a bath without someone within arm's reach, running isn't the same for him. He's very wobbly and can't go as fast as he used to without falling. I can look at him and see what has changed. I can look at those things as temporary effects to what he's enduring everyday. I have to hope that he will get past this. I realize now that for his sake, for his care, for his future...I have to suck it up, stop freaking out and be strong for him. He is 3, there is no one else that can do this for him. And, although I am writing this right now, it doesn't mean that I will be strong everyday. I know I will get distracted by the pain and unfairness of it all and I will get caught up in the unknowns of tomorrow. I will grieve the childhood I dreamt for him. I will feel sorry for myself for having to do this day after day. I know it will happen. Maybe that's a really poor way to look at all of this. But, I would like to think that God is going to change me over a matter of time not, necessarily overnight. He has started already by letting me see where I am weak. I am thankful for that. I feel as though He is lifting my head and helping me to see the positives I couldn't before. (Well, sometimes I could see them, but they didn't seem to outweigh the negatives and so I didn't really care that they existed.) We are no longer frozen in fear and sadness, we are moving forward and we have a great leader.

"Special Needs"

I have been having a hard time with this term. "Special Needs" When this all began I went through a time of grieving Hewitt's future. There are a lot of unknowns with Doose syndrome. Many kids have severe developmental delays because of it. This has been one of the hardest things for me to accept. Much like the first week when I finally had to face God about letting go of his life. This has been my second "letting go" of Hewitt. He was born perfectly healthy. He lived almost 3 years perfectly healthy. Not just healthy, but smart and witty and feisty and fun. He is unlike my other children. I adore them all the same, but Hewitt is different. He is his own man.

As one Dr. put it, it's like he's been struck with lightning. I know I've posted that before, but it's so true. I was reflecting on this "letting go" yesterday and all the feelings of sorrow came rushing back. When the nurse came and she was telling us the things he qualified for she used words like: developmentally delayed, special needs, BLAH BLAH BLAH BLAH. She talked about the special programs at Shoreline here and all I could think about was him sitting in a classroom with all these developmentally delayed children in his little blue helmet, looking delayed but feeling lost. I can't think about it without crying. He shouldn't be there and even now it's hard for me to let this go. There's nothing wrong with those children, but when you have a healthy child who's mind and body are strong, it's hard to imagine how he might feel being surrounded by children who's minds and bodies aren't as strong.

When I was walking through this in the beginning I was terrified. I mean absolutely terrified of the idea of losing him...not physically, but his mind. I cried about it all the time. Of watching my little boy turn into something else, all our future dreams of love and life were suddenly stripped away. It seemed so unfair, so impossible. I carried this guilt because I honestly felt, and I didn't want to say it out loud, that it would be harder to deal with that than with actually losing him. I know that sounds so bad, but that is where I was at. I wish I could say that I had an amazing revelation that changed my perspective, but I didn't. Like before, I am resting in simple things. The fact that God knows and calls me by name. The fact that He loves Hewitt more than I do and He knows the hurt I feel for my son. The fact that this life is a vapor and the pain of today will be gone in heaven.

I am trying to accept the changes now. He has small bits of regression, largely medicine related in my opinion. I have met enough people that have positive outcomes that I no longer focus on this aspect of the syndrome. But, every once in a while like yesterday, it comes back to the surface and I have to deal with it again. Acknowledging that God is in control is the most comforting thing I can do. Hayden reminded me of something very simple but profound in the midst of all of this. God is always right. He is always right. He doesn't make mistakes, which means that He allowed this to happen to Hewitt and it wasn't a mistake. Right now I'm not sure what that means for Hewitt, but I know that He is teaching me a lot through it.

A Helping Hand

I had a meeting with a social health person a couple weeks ago. I had Hewitt and Titus with me at the meeting and had the opportunity to share with the woman, what we've been going through with Hewitt. She had the opportunity to witness what we've been dealing with (he was having a lot of drops that morning). She was very sweet and about a week later I received a lovely message on my voicemail from her. She said she couldn't get my adorable little boy out of her head and she wanted to do something to help us. She made a referral for a public health nurse to come meet with us. She said the nurse would be available to help us find our way through the system.

So, today we had a public health nurse come to our house. I am so excited that she is now a part of our lives and this mess we're in. I think her services will help us navigate through the many elements that I often don't have time to pursue (or knew they even existed) - the medical system, support groups for our family, disability insurance, getting him into a headstart program, etc..she is available to help us be an advocate for Hewitt. The meeting helped affirm our feelings about our neurologist...that we as parents have a responsibility and if our Dr. isn't willing to listen to our concerns then we need to seek care elsewhere. Her service is provided free of charge and she is available to help us with whatever we need help with! I feel so much better knowing we have one more person in our corner that has dealt with the medical system.

Medically, this hasn't been a great week for Hewitt. His drop seizures have decreased since we decreased the dose of his 3rd med (depakote). But, his absences have increased by a lot. The last couple days have been really frustrating to watch him be so out of it for such a large portion of the day...we continue to struggle knowing when to administer his emergency meds. We are looking forward to seeing a new Dr. on the 21st that will give us a more clear understanding of how to handle these episodes. The nurse today said she would give a call to Children's and try to get us an appointment even sooner. This would be great as we would prefer not to have to go back to the neurologist at Mary Bridge.

Hayden speaks at a camp next week for their Jr. Highers and we will all join him. I hope this will be a great time to just be somewhere else and be distracted by the outdoors, new faces and some time together as a family. We would appreciate your prayers for the week. For Hayden especially that God would just give him a clear mind and that we would be a joy to have along and not a big distraction. We think it's a great ministry opportunity to be there as a family, but sometimes can get so caught up in family that it's hard to reach out! Please pray for a balance regarding that! Thanks again for your prayers, your encouragement and your love! This would be a lonely road to travel alone and we are thankful for the family, old friends, and new ones, that God has provided along the way.

Hallelujah!

We received a call today from Children's hospital (who is not accepting transfer patients) to schedule an appointment with one of their epileptologists!!!!!!!!!!!!!!!!

A small miracle by any account. We are praising God. It's in July - (new patients are scheduling out to December) so we are slightly ecstatic and very much in awe.

A glimmer of hope. God is bigger than the screwed up healthcare system. How do I ever question these things? It's beyond me.

The Helmet

So, some of you have asked if he's gotten it yet. They accidentally shipped the wrong one so this is him with a sample they had at Children's. The therapist rigged it up so it would fit him until his comes. It has already saved his little noggin a few times! I did really good until we stopped by the church to show Hayden - and then I lost it for a minute...it's not something I ever dreamed I would be putting on him, but I know it's for his good and it will protect him.

A Breather

Some pics from breakfast this morning. Yesterday, Hewitt was pushing a big plastic car on the floor in the nursery and had a drop, faceplanting onto the car. We took him to the ER later that day to make sure nothing was broken. The bruise kept creeping up his face and it was so swollen we needed to make sure! We decided to give him his "rescue" med yesterday afternoon. He was having so many drops it was hard to keep him safe. We were also hoping it might break the cycle of all the seizures he's been having. It has given us a temporarily breather! We haven't seen a seizure since we gave it to him yesterday. I know it's temporary, but it's been a nice break nonetheless!

more frustration

Today, watching Hewitt I had a sickening revelation. We give him these meds to stop the seizures. The seizures that might delay his development. The seizures that might cause him to fall multiple times a day. The seizures that keep him from interacting. We started Hewitt on his first med after his 3rd tonic-clonic seizure. He didn't start having all of these other types until after. Now, as Doose syndrome onsets it can take time to see all of the different seizure types. But, there are definitely some meds that aggravate seizures for some kids. Watching him for the last 2 weeks, functioning at half of his usual self I can't help but wonder what would happen if we take him off of it. Before this happened I was hesitant to give my children much of any med unless totally necessary. Titus was my first to ever have an antibiotic. To this day, the other boys have never been on one. And, we get thrown into epilepsy and I suddenly am okay with just pumping my kid up with all these medications in the hope that they're going to stop the scariness of the unknown. Meanwhile I have suddenly lost my concern for the unknown of all of the drugs my kid is on. I can't tell if he's all doped up because he's having so many seizures or because he's on so many meds. I don't know if his seizures are actually from the epilepsy or if they're aggravated by the meds. I feel as though I don't know much of anything about WHY this has happened and I have been okay with that. I feel so angry that the Dr.'s won't look beyond the obvious for a why this is happening. We do that for every other thing that happens. But, unless it's something obvious with epilepsy we just say the cause is unknown. I know it's not as simple as that. The brain is very complicated and there is a lot unknown about it. But, we do know a lot about the rest of our bodies. And why wouldn't they look for something else that might be triggering his brian to do this? All day today I just couldn't help but think how ridiculous it is that he is so out of it and still having seizures and it hardly seems worth it to use meds if he's just going to be out of it all the time anyway.

I HATE THAT THERE IS NO RHYME OR REASON TO THIS ALL. I HATE IT. I HATE IT. I HATE IT. There is no limit to the amount of times I can say that to make me feel better about it. I still can't believe this is our life sometimes. That I look at him. He's so stinkin cute. And, he stares off and he drools and he drops and he throws his arms and I just sit here wondering where my kid went and for the first time I am asking why God has let this happen to us. And, even though I know there is an answer to that question - it doesn't always make it hurt less. I know He wants to carry this burden for me, but I have to be willing to give it to Him first. And, every time I think I've given it over I find some way to take it back. I find it in my tears, in my anger, in my frustration, in the meds that don't work, in the bruises on his face, in the stupid ridiculous blue foam helmet I have to put on his little head. I keep thinking I've handed it over and every time it starts to hurt I take it back. I feel like Paul in Romans 7 - ...for I have the desire to do what is good, but I cannot carry it out. For what I do is not the good I want to do; no, the evil I do not want to do- this I keep on doing.....What a wretched man I am! Who will rescue me from this body of death? Thanks be to God - Through Jesus Christ our Lord." vs 18,19,24

EEG results

I was just looking back over the page and realized I never posted anything about his EEG. I talked to the neuro while she was reading it and she said it didn't look good and that he was having a lot of seizure activity. (I could have told her that without an EEG.) We talked about it again last week and all she told me is that it still reads abnormal. This is good and bad. Good in that we're still dealing with the same thing. But, bad because we're still dealing with the same thing. One of the reasons she wanted to do it was because he had been having some leg stiffening for a week or so and she thought it might be a focal seizure: meaning it's coming from one place in the brain. When you have focal seizures it's a good thing, (as far as seizures go) because they can pinpoint where it's coming from and it makes you a possible surgery candidate. Hewitt's continue to come from all over which rules out surgery for him. If you have any more questions about that let me know and I can explain that further. For now, we just have to control them with other means, which we are doing rather unsuccessfully! We just finished day 3 of lowering his depakote sprinkles (the med we introduced 3rd) and he continues to drop a lot everyday and now his absence seizures have increased. He might be having withdrawal seizures though. We won't know for a little while how he's really doing with it all.

My New Babysitter - the Boon Flair

Today was a better day, largely in part because of the images above!
Much to Hayden's dismay, and rightfully so, I indulged on an expensive highchair for Hewitt. (The dismay being that I charged it to my paypal account ;-)) It may seem like a small thing to be so excited about, but, I finally found a safe solution to meal time with Hewitt. After a lot of researching and waiting for one to come up for sale on ebay, I found him this highchair that accomodates up to 50lbs(he's 40) with a 5-point harness. It has a pneumatic lift, (so much fun) I can raise it up so he could help me at the kitchen counter with something, or down low enough to push up to the table. It has castors and it glides around, and is ultra-modern: all of which makes it a PERFECT FIND. It is so cool that Lincoln and Everett are quite jealous and Lincoln asked if we could please buy two more for them. In case you're wondering why I needed a solution at meal time, I will share a quote from another Doose mommy.

"The dinner table was hard as well, I usually ended up with him sitting on my lap…no one but us could possibly understand how dangerous and difficult a kitchen table and fork could be to a child. "



When your arms jerk up and you are throwing whatever is in your hand, hitting yourself with what is in your hand, dropping forward and hitting your forehead, nose, lip, cheeks...breakfast, lunch and dinner become a little bit dangerous. I had previously been putting him in the armchair, surrounding him with a blanket, putting a pillow on the table in front of him and then a towel over that so he didn't get it all dirty. Even with that, sometimes he still hit his face on the edge of his bowl or plate. I have tried strapping him other ways, but he fights it and I don't blame him. FINALLY, I have one place I can strap him in, walk out of the room and I know he's not going to get hurt. (Unless he hits himself with whatever is in his hand, but there's not a lot I can do about that anyway.) This is a praise. I am ecstatic about it and if he would let me keep him strapped in there all day I just might.

Now if I could just figure out how to keep him safe from the hardwood floor, the edges of his bed, the toilet....one thing at a time.

And, one more praise. Hewitt goes in to get his helmet tomorrow. This could not have come at a better time.

Frustration

It seems as though, just when I thought things bad, they got worse. This was such a hard week. I think, the hardest we've had since this began. His drops have been so frequent, it's hard to keep him safe. Friday, Hewitt was sitting, playing in the grass while the other boys rode bikes on our front sidewalk. He got up just for a moment and had a drop while standing in front of the concrete path. The only thing that caught him was his forehead on the cement. It was horrifying to watch. He had his helmet on and when he fell it made a loud crack sound and at that moment I didn't know if it was his helmet or his head and I freaked out. Hayden assured me it was his helmet. Saturday I took him into urgent care because I was still feeling uneasy about his head and while in the waiting room looking at the fishtank, his head dropped and he hit the other side of his forehead on the edge of the fishtank frame. Sunday, he dropped in the nursery on a wooden rocking chair and got another large bruise on his forehead. By the afternoon his right eye was beginning to turn into a black eye. This morning he dropped and hit himself right between the eyes and so now the bridge of his nose is swollen and the rims of his eyes are blue. It might sound like we're not keeping a close eye on him. But, these are just 1 of 50+ drops that he's having every day and we can't catch him for all of them. I would like to just keep him seated with a 5-point harness all day, but that doesn't seem very fun or fair. None of this is fair. I feel so helpless and frustrated with the whole process. I feel like I'm in an abusive relationship with someone that is hurting my child and there is nothing I can do to get out.