Walking through the what if's

After our first week of seizures I was staying up almost all night every night to watch Hewitt. We had moved him into our bedroom and had a bed for him right next to ours. Throughout the night I would lay on my side and just watch him sleep. I couldn't turn over, it was wierd. We didn't know what to expect and I had been reading way too much online. I had read about SUDEP - sudden unexplained death in epileptic people. When I did fall asleep I would wake up in terror that I had missed something or that I might find him either dead or brain dead from seizing too long. These nights were so hard, but I had this adrenaline that I'd never had before and sleeping did not seem worth losing my child's life over.

Every night before we went to sleep Hayden would pray and ask God to give us ears to hear. Every night I let him pray and I listened and echoed the prayer in my own mind, all the while struggling with something. Finally, after about a week I was exhausted. I laid in bed one night watching him and I couldn't stop crying. I had a conversation with God that I don't think I will ever forget. I asked Him to give me ears to hear if something was happening. His response was "What if I don't?" I wasn't expecting that response, but had been avoiding Him since it all begun because I knew it meant dealing with some hard things. He asked me again. "What if I don't? Does that change who I am? Does it change what you will think of me, or if you believe in me? " and then He said, ever so gently, "Colleen, trust me." Of all of the things in that phrase, what I heard was Him saying my name. At that moment I was so comforted by the fact that I believe in a God that calls me by my name. He not only knows my name, but He calls me by it. He knows my hurt, He lost a Son. And, here I was only living in fear of losing one. I finally let myself walk through my worst case scenario: Hewitt dying. I had to come to realize that Hewitt would be with God. I had to let myself just accept the idea of letting him go to be with God. I had to accept that God loves this child more than I do and that ultimately Hewitt would be much happier in heaven than he will ever be on earth. So, I did it. I let him go, I wept for a long time and then I kept this conversation with God to myself for a while. It felt so sacred, so special I almost didn't want to say it out loud. Eventually though He prompted me to share. First with Hayden, and then with others. A few weeks later I had to walk through a similar situation with another aspect of Hewitt's life. I will post about that later. But, I just want to say this is quite the process of refinement. I thought I had to let my kids go many times before. The first time you leave them with a babysitter, the first time we went on an overnight date, a weekend away, etc...those experiences were all little baby steps to this one big act of letting go. I don't think this will be the last time.

Update

This has been a long week for many reasons...most of which are related to Hewitt! His side affects continued to get worse over the weekend. It was a hard weekend for us to watch him decline so rapidly developmentally. His speech was slurred, he was having a hard time walking, putting 5 words together, focusing on something, responding to us...it was depressing to say the least. We continue to think it's the 2nd med she has him on. (zonegran) and we continue to ask her to take him off of it.

We talked to her Tuesday morning and after telling her that his seizures increased over the weekend and all of the things we were concerned about she had us come down to Mary Bridge in Tacoma. She ordered an iv dose of a new medicine, called Depakote or Valproic Acid. Nothing makes you feel better than giving your 3 year old a med that has acid in the label. He cried as it went into the IV, he said it hurt. It was sad, but we were (and still are) hoping it would help. She agreed to at least cut the dose in half of the zonegran and continue to watch his progress. As of Tuesday, there hasn't been any progress. He left the hospital still having small seizures and they have increased all week. Unfortunately, the ones that continue to increase are the drops. He has had a lot of hard falls this week. Thankfully nothing broken. A knot on his forehead that seems to attract him to the floor, and a bloody nose this morning. Lots of falls on his bottom, which have been a blessing. Before this, he usually fell straight back or straight forward and he's been bending more with his falls for some reason.

At this point it is so hard to know what is the progression of the syndrome and what might be med related or meds just not working. One of the side effects of the zonegran is appetite suppression..we hadn't seen it until last weekend and now he's been having a hard time eating all week. When we took him in for the iv, they did blood work and found out he was dehydrated. So then we wonder if the weekend was so bad because he was dehydrated or if he was dehydrated because the weekend was so bad! This is all so frustrating and it's so easy to get sucked into the frustration and unfairness of it all.

He has an EEG scheduled for Monday at 7:30 in the morning. We have to keep him up 2 hours later than usual and wake him up 2 hours earlier than usual. This should be interesting. For all of us! I have this feeling he is seizing more than any of us know or see. Throughout the day if I am paying close attention - he doesn't usually go more than a couple minutes without something noticeable. I am curious what the EEG will find and what the Dr. will say about it. She will get the results on Monday and said she will call me Tuesday.

After the EEG on Monday, we have a fitting for a helmet scheduled for Thursday. This has been a hard one for Hayden and I to swallow. More than anything we just want Hewitt to feel like himself. We are thankful right now for his age and his lack of awareness of people's opinions of him. (for the most part) We are praying he will wear the helmet and that it will come quickly. His bike helmet is really bulky and from what I understand this helmet will be much lighter weight and easier to wear than a bike helmet. But, right now he can't even walk out on the cement without someone holding his hand. I will update again next week when we hear about the EEG. Thanks for your continued prayers.

Appointment update

I have mixed feelings about our appointment yesterday. Hewitt acted like a drunken child the whole time. This was good for the Dr. to see, but hard for me to watch because it just affirms that he is drugged and how it's affecting his little body. She has seen smart, funny, strong minded Hewitt and he did not show up to the appointment on Friday, drugged Hewitt did. He is quickly regressing since he's been on this second med and I am going to have to continue to push for him to be taken off. She wants to give it one more week, but I think I've seen enough to know that it's the medicine. His seizures continue to increase daily, even though we upped his dose last Tuesday. Every day is getting more frustrating to watch him in this state. His drops and absences increased a lot today, and although he hasn't had a tonic/clonic in several days...these are just as bad, in my mind, and harder to manage. We have another EEG scheduled for June 2nd. While I am interested to see how it has changed since this all began, I am also a little nervous because I know the seizure activity has increased so much and I'm not sure how that will read differently on the EEG. I need to do some reading this week on that. You can pray for boldness for me as I speak with the neurologist. It is not worth another week of his life for me to watch him be like this...especially since he's having seizures anyway.

Lover

These are the words of a song called "Lover" by Derek Webb. It's such a beautiful song, go listen to it if you can, I'm sure it's on itunes...it's a few years old. You have to think about some of the words...I love it, and listening to it tonight, it really spoke to my heart. In all my wandering away from Him, He is always there, always pursuing me, always loving me...




Lover
words and music by derek webb


like a man comes to an alter i came into this town with the world upon my shoulders and promises passed down and i went into the water and my father, he was pleased i built it and i’ll tear it down so you will be set free


but i found thieves and salesmen living in my father’s house i know how they got in here and i know how to get ‘em out i’m turning this place over from floor to balcony and then just like these doves and sheep you will be set free


i’ve always been a lover from before i drew a breath some things i loved easy and some i loved to death because love’s no politician, it listens carefully of those who come i can’t lose one, so you will be set free


but go on and take my picture, go on and make me up i’ll still be your defender, you’ll be my missing son and i’ll send out an army just to bring you back to me because regardless of your brother’s lies you will be set free


i am my beloveds and my beloved’s mine so you bring all your history and i’ll bring the bread and wine and we’ll have us a party where all the drinks are on me then as surely as the rising sun you will be set free

epiphany

I feel somewhat sheepish having this epiphany today...but that's okay. As I've struggle through this whole mess of hope and wanting it...I have been asking myself if "hope" is actually what I'm struggling with. If I am focusing on the wrong thing, like maybe I should be content in my circumstances no matter what they look like and let God take it from there...I realized today though I have just had a distorted definition of what hope is for this situation. I have been imagining hope to be having a good attitude about the seizure free days and hoping that he will get there. So, if I could shift my thinking a little...I will always desire to have seizure freedom, but right now I know it's very questionable as to whether that will happen anytime soon, just from the knowledge we have on this syndrome. My "hope" needs to just be resting that God is in control of everyday. I don't have to have this positive outlook that maybe tomorrow he will go into spontaneous remission or that the meds will start working. And, those are absolute possibilities. But, I need to just continue to lay this at His feet and say - You are in control of everyday no matter what it looks like - and that's all I need right now.

Update

As I posted before, Hewitt's seizure streak was broken last Wednesday while my Dad was watching him. Since then, he has continued to gradually have more seizures. Friday morning he had a big seizure in bed with us, we had to use the emergency meds to stop it which we've never had to do before. We were a minute away from having to call 911.

Before we went to sleep the night before, we talked about how wierd it would be to see a big one since it's been over 3 weeks since he had one. That is a praise. But, now he's had 2 more since Friday and thankfully they've stopped themselves. They continue to increase but we go in tomorrow to meet with the neuro again. I do not like the second medication she has added. He has been having odd side effects that leave us very uneasy: anger, aggression, sadness, wierd thoughts. Not to mention, the increased seizures this last week. If anything significant changes after tomorow, I will let you know.

She prescribed him for a helmet this week. We have mixed feelings about it, but know that we should probably do it for his safety. He had a drop on the concrete Monday night and nailed the back of his head pretty hard. Poor baby. He braves it all very well though and is very tough!

Idols

As I look back over the last entry, I still can't read it without crying because it is so fresh. God has been doing a work in me though and I feel like I am starting to get a glimpse of what He is speaking to my heart.

We have been learning and teaching about faithfulness at youth group for a few weeks now. Last night we talked about unfaithfulness, we read in Exodus 32 about how the Israelites fashioned an idol after Moses had been gone for so long because they wanted a god to lead them. As I read this passage I was caught between two things. The first and obvious was the audacity of these people to not credit God for bringing them out of Egypt and so quickly turning their backs on him because they were impatiently waiting for their leader. It is easy for me to look at this and think - "You idiots! Do you not see? Do you not get it?" On the other hand, I saw something new. God created us for relationship. He created these people to worship and have relationship with Him. While there is no excuse for their blatant unfaithfulness I feel like I can relate to their desire to have a leader, to have SOMETHING to cling to as they start down this new and unknown path. I was amazed at the correlations of this passage and my own life as we walk down this new path with Hewitt. I think a lot of people that are facing a new trial could relate. I have had people tell me that they are amazed at how strong I have been through all of this. Sometimes it is easier to be strong when the affliction is so great. Not that I am being strong of my own power. But, it is easy to turn to God and let Him take control when it's obvious to you, you are no longer in control.

Now, for me, it is in the waiting that is harder. It seems ridiculous if I step back and look at the situation. I should be thankful and joyful in the reprieve from seizure activity, but I'm not. Much like I think the Israelites were being ridiculous in their actions. When you are in the moment, caught in a day when there is no end or hope in sight, it is easy to turn inward and look for something else. My idol has been this pursuit of hope. I have not been seeking hope out of faithfulness, but to ease my own miserable heart and mind. My desire for hope in my day to day living is so strong and yet I can't even see what that hope is supposed to look like anymore. I am so blinded by this idol I have fashioned for myself. Somewhere in my mind I have told myself that I deserve to have hope, that I deserve to see what God is doing RIGHT NOW, today! I scoff at people that "throw" verses at me. I don't think this life is an equation that we can just plug a passage into and make things better. I believe this desire comes from God...just like the Israelites He created me for relationship. He created me to pursue Him, worship Him and love Him. Sadly, I have been missing it. I have been missing the blessing of encouragement out of my desire to have authenticity. What I should be doing is taking those verses and meditating on them, letting them penetrate my heart and soul and letting God do the work, not me. Sometimes I am overwhelmed when God shows me the selfishness of my own heart. From overhwelmed I move to humbled that He would love me and then amazed that He would give His own Son, for a heart like mine. It doesn't make sense. Much like this entry might not make sense. I have been processing a lot this last week, so if this is disjointed, I apologize. God has been working in my heart all week, trying to open my eyes to see that I don't have to have answers. Amen to that.

Hope for today

I don't really want to write this, because it means I have to acknowledge the fact that Hewitt wasn't healed for the last 8 days, that he is still battling this ugly beast. We had the wonderful opportunity of going on a double date last night. My Dad watched ALL of the boys by himself. (Good job Dad! You've still got it, and they had a blast) On our way home he gave us a call to let us know Hewitt had a couple seizures while we were gone. We were literally mid-laughter having a FANTASTIC time when he called. We're glad he did, but amazed at how quickly it came to a screeching halt. Hew had a drop while they were playing and cut his lip and then after he was in bed had a short tonic seizure (similar to grand mal/tonic clonic). When he comes out of these he is very cranky and my Dad only called because he couldn't console him. He cried as we headed home and stopped right before we got there. He continued having different seizures throughout the night. We had him sleep with us and he was doing some strange things...not sure what to think about the different movement. We are going to give it another day and then ask the neuro about it.

I have been feeling strange all week about this. It felt like with this break from the seizures we were thrown out of it just as quickly as we were thrown into it all. I have wondered how I will react if they start back up. If I am going to have to walk down the same paths of releasing my child to God, over and over. I have struggled with feeling like I should be hopeful that we had 8 days without anything, but with it, a lingering fear that they will be back anytime. Everyone tells me I need to have hope. Of course I have hope...but, it's looking more like this: I have hope for eternity, I know this life is but a vapor and these things don't matter. I know that Christ loves me and Hewitt and desires for us to know Him and that this experience is most likely one of the ways He is going to do that. I have hope that I will spend eternity with Him. But, for now. I can't figure out how to translate that hope into today...or tomorrow for that matter or why I need to even bother. I want to hold on to my cynicism because it hurts much less when things don't go like I have hoped they would. I realize this is an ugly thing in my heart that I need to have refined. But, for now, this is where God has me and I need Him to draw me forward out of it all.

And, so far, Hewitt has been without seizures all day...maybe last night was a fluke thing. Not sure.

How this affects our whole family

Last night we were getting all of the boys in bed and when it came time for Lincoln to give Hewitt a kiss goodnight, he absolutely refused. He refused to the point he got in trouble for it! He and I had a discussion about the situation and it ended up being a great time where he opened up to me about how he's been feeling. It was relieving and heartbreaking all at the same time. He told me he didn't want to kiss Hewitt because he wasn't a "normal" brother. Becaue he has seizures. When he first said this I was so upset, felt so defensive of Hewitt, but God was near and calmed my heart a little bit. I let Lincoln talk. I don't think he quite knew how to describe how he felt about it. He knew he wasn't scared or embarassed. He kept saying he just didn't like Hewitt because he has seizures. I tried to explain to him how this is an unfair reason not to like someone. I gave him an example of him breaking his arm, and what if Everett didn't like him anymore because he had a broken arm....he saw my point. I could think of other reasons for him to not like Hewitt from a big brother perspective. Like that Hewitt hits him, takes his toys, breaks things, gives me a hard time (Lincoln is very protective of me) things like that. Pesky little brother things. But, just based on the seizures? So, we talked about how important it is that we love and protect one another in our family. Even our little brother who has seizures, ESPECIALLY our little brother who has seizures. We prayed that God would grow his heart with love for Hewitt. He also said he doesn't like it because he talks to him and he just stares off and doesn't answer him, and that he's just keeps thinking he's going to have another seizure. This really hit me hard. I think about that all the time but I had never stopped to think that Lincoln, at 6, would be worrying about another one coming. He's been here since day one though, seeing all of them. I am praying that God will use this in his heart. I was encouraged to see that he was stronger emotionally than I realized. I read today it is normal for siblings of kids with epilepsy to feel guilty for feeling the way they do. They see that their parents are stressed out and they don't want to give them anything else to worry about. I think I am going to look for a local support group or family with a similar situation. I think it would be good for him, and eventually Everett to talk to other kids about being a sibling dealing with this. I hope that it will build their character in a way it wouldn't have been strengthened otherwise.

Little Trooper

I was thinking about Hewitt today and all of the things he's gone through in the last 2 months...although he doesn't know when the seizures are happening he is fully aware of all of the Dr.'s visits. So, I was making a list in my mind of all the things he's had done. I am posting it partly for my sake so I don't forget, but also to say "good job Hewitt!" he's been a little trooper through all of this.

Since March 8th -
We've been to the ER 5 times, twice in an ambulance, had 3 appointments with the pediatric neurologist, 2 with his regular pediatrician, a ct scan, an EKG, an EEG, an MRI, about 4 blood draws, toxin blood screen, urine screen, glucose check, x-ray on his shoulder, and more seizures than we could count...our estimate is over 1500. And, of those, 17 were tonic-clonic (grand mal) type seizures in a period of 5 weeks. Whew! I'm exhausted all over again just reading about it. We are now 6 days seizure free. And, that means EVERYTHING. No head drops, myoclonics, NOTHING. All I can say is Praise God!

and the naughtiness continues

Praise the Lord for yet another day without seizures...I think this officially makes it almost 4 days! Amazing...it seems though that we have traded seizures for very naughty behavior! I will take the behavior any day because it means Hewitt is alert and coherent. But, man, this is it's own trial! I am trying to stay firm, but feel so frustrated because I don't know how much of it is him and how much is the meds. We saw a definite increase in this behavior with the new med, but who knows what's what. It's so hard to tell.

A funny note about the timing of the seizures stopping - One of Hayden's fish at his office started twitching pretty severely...we are hoping maybe the seizure demon left Hewitt and went into Stanley! (the fish) : - ) Maybe the behavior demon will do the same thing soon.

Another seizure free day

We are on 2 days now! Feeling excited and guarded...but, trying to enjoy them. We had some friends bring us pizza tonight with their 4 boys! It was great to just let Hewitt go out back and play with everyone. We sat on the couch and just talked with our friends...it was wonderful to let him go a little! Woo-hoo.

Sudden change

Hewitt upped his dose of his new med, zonegran, to 2x a day on Saturday. Our neuro didn't expect us to see any change until we were at 2 doses a day. So, Sunday after his nap he had ONE drop. ONE. I can't believe I'm writing one. He hasn't had any all day today. We just went from hundreds a day to nothing. I am feeling a little nervous....faltering somewhere between hopeful and cynical. I don't know what to think. It was great, even if it was only one day. We had a great day. The sun was shining, Hayden was off, and he played and played and played. It was awesome. Praise God, even if it's only a day. We'll take each one as it comes. He took a nice bubble bath with his brothers tonight. (With Daddy closeby, just in case.) He is in the back by the baby. (Titus)

Explanation of "The Beast"

In case you might be wondering why I called this his battle with the "beast." - I have joined a group online for parents of children with Doose. It has been such a blessing and I'm hoping it will be an opportunity for me to share not only our struggle and encourage others through theirs, But, to share what our hope in life is. I learned this term "the beast" from these parents. Some of these parents have been dealing with this for years without a lot of relief. They have tried many different drugs, treatments to no avail and they have to watch their children suffer daily. When I was having a hard day last week, I posted a message just venting about this whole experience. One mom responded so perfectly describing how we feel. She said it's like someone is coming in and hurting your child right before your eyes and there is nothing you can do about it. The beast is epilepsy. It's called "the beast" for the times it seems to hide itself and get our hopes up, only to come rearing it's ugly head without any warning. It is an ugly, hard to beat, frustrating part of our existence and it feels good to give it an ugly name!

The "old" Hewitt coming through

Hewitt woke up today in a cranky mood. For those of you that know him, this isn't an unusual thing. This picture is a perfect image of what is attitude is like most of the time! But, since he's started on meds he hasn't been as cranky as he used to be. I really forgot how bad it used to be until today. He had his usual morning of myoclonic seizures for an hour or so. These are the small ones that make his arms fly up or his head drop, or there's myoclonic astatic ones that make him lose muscle tone and fall down. Thankfully in the morning he's usually in bed with me when these are happening. But, this morning it all came rushing back to me as I wrestled him to sit in a time out on his bed! I caught a glimpse of how he behaved before all of this started. I have been so wrapped up in everything going on I forgot how really cranky he can be. He was being so naughty this morning after the seizures stopped. I didn't know if I should be thankful that the medicine is allowing him to be himself or if I should cry that I have this to deal with on top of his shoulder and the seizures! Either way, it was kind of nice to see him and know he was being himself again. Even if it means dealing with a little stinker! I'll take the stinker any day if that means I have my Hewitt.

"I fractured my clavicle"

Monday we ventured out to IKEA to get some things for the boys' room. While we were there we let Hewitt get out of the cart for a very short period and while he was out he had a drop seizure and face planted on the floor. Not only did he get a nice bruise on his forehead but he fractured his clavicle (or collar bone). We had a lovely trip to the er to find out there's not really anything they do for this anymore. He is hanging in like a little trooper and doing well at not moving it too much. It's the rest of us that keep forgetting and picking him up on that side or something like that that seems to aggravate it. They say it should be well in 2-3 weeks. Like the seizures aren't enough! Thankfully it's an easy fix and a quick heal. I tried to get him to say " I fractured my clavicle" to people when they ask what happened to his arm. He did for a few and they got a good chuckle out of it, but now he is saying he broke his college bone. He is very charming and gives us laughs when we least expect it. He told the x-ray tech in the hospital that his nipple hurt! I got a good laugh out of that one. In an effort to get the boys to not say booby I taught them they have a chest with nipples. (which they are oddly fascinated with) I haven't made a big deal about it, but it is funny to hear a 3 year old call it what it is.

The Skinny

On March 8th life took a different turn for the LeRoy family. Hewitt had been playing in our little backyard and we found him on the ground, out of it and unresponsive. We immediately called 911 and by the time we were en route to the hospital he was awake and back to his normal self. None of us really knew what happened and the Dr.'s could only guess. They did an EKG and a CT scan and when all looked normal sent us home. 3 days later he was sitting at the dining table and slumped over his bowl and had a seizure.We called 911 again. They took him to Children's hospital for a second time and observed him for a little bit. Much to our dismay and despite our asking, they didn't do any further testing that day. They prescribed an anti-epileptic drug for him and sent us home. On our way home he had another, more intense seizure in the car. We then drove to the hospital, they got us in and proceeded to do a couple tests. They gave him an iv and oral dose of the medication they prescribed and then sent us home late that night. We went home with a referral for an EEG and a follow up with a pediatric neurologist. We went home with no idea as to what would follow.

Over the last 7 weeks Hewitt has had at least 5 different kinds of seizures. These come in all different forms from short ones that make him stare off, short ones that make him fall hard to the ground or forward to the table, off the couch, etc. long ones that make him fall to the ground, long ones that freeze him wherever he is standing, short ones that make a limb go tense which sometimes causes him to fall if it's a leg, or throw whatever is in his hand if it's an arm, or sometimes he hits himself in the face. (not funny at first, but now sometimes we get a little chuckle if he's not hurt. we've got to laugh at something) He has these little storms in his brain and sometimes he just stares off barely able to get 3 words out of his mouth for 30 minutes at a time. When these happen his lips are often quivering or twitching and he often falls from side to side.

About a month ago we met our pediatric neurologist and she diagnosed Hewitt with a rare form of epilepesy called Doose syndrome or Myoclonic Astatic Epilepsy. Less than 1% of children with epilepsy have Doose/MAE. It always seems to be changing. Just when I think we're getting into a pattern, something about that pattern changes. It is incredibly unpredictable and hard to treat. The seizures tend to be resistant to anti-epileptic drugs and it often takes a very long time to find the right drug combo. Some people never find it and end up using other treatments. There are steroid therapies and a special diet called the Ketogenic. These are options down the road for us, but for right now we are trying the meds. I don't know what else to say about it other than we hate it. We wish it never darkened our doorway, but it's here and now we have to learn to live with it and raise our child with it. Only God can give us the strength we need to do this right and for once in my foolish little life I am glad to lay something at His feet and beg Him to take it from me. I can't carry this burden without Him, and I don't want to try. A friend just emailed me this passage and it made me cry to read these words. I do not want to be consumed and I don't have to be!

Lamentations 3:17-26
I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope:
Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him." The LORD is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the LORD.