Still Doing Great

Hewitt at Tolmie State Park last week with his cousins.


Things are going GREAT! Hewitt is still seizure free. The only thing that hasn't really improved is his sleep disturbances. We're coming to accept his wakefulness at night as part of this ordeal and hoping he will eventually grow out of it like he is hopefully doing with this awful condition! We are just thankful to have him well, with us, growing, listening, loving and just being an ACTIVE part of our family again. He LOVES his new baby brother and has been so sweet with him. It's still amazing to me that things stopped so suddenly and for so long now. Much praise going up to our Savior!

Birthday Pictures

The boys had a great birthday party this year. We wanted to keep it small, so we asked the Mallory family out at Camp Gilead if they would host a scavenger hunt and sleepover for them. They are friends of ours that have 5 little boys. We invited one other family that has 2 boys, so all together we had 11 boys 7 and under! It was a blast. They had a scavenger hunt around camp dressed up in their hero costumes, cooked smores over the camp fire, ate cupcakes and finished the night by watching Kung Fu Panda, and then got to sleep in camp cabins! Thanks to Camp Gilead and the Mallories, (and the Webers for coming too :) )

It was such a blessing to watch Hewitt run and play with the other boys, even running with a light saber in his hand WITHOUT a helmet. Praise God for this awesome break!

HAPPY BIRTHDAY HEWITT!

Hewitt turns 4 today! I can't think of a better way to be able to celebrate his birthday then enjoying it with almost 10 weeks of seizure freedom behind us. YAY Hewitt! He continues to improve in a lot of ways. I think the most remarkable improvement would be his memory. He is repeating and singing whole songs and often times remembering things I tell ALL the boys, better than his two older brothers. I don't know if I shared this earlier but we've been able to relax a little bit on his diet restrictions and he was able to help with cupcakes that we made for his cubbie class at AWANA tonight. Powdered sugar frosting and all. Hopefully they won't make him sick!

We continue to be concerned about his gross motor skills and encourage him to run and play as much as possible. I will be posting an update on a recent meeting we had with the school district trying to get him some services in thier special needs preschool. But, for today, I just want to say, Happy Birthday Hewitt! (it's also Lincoln's 7th birthday) We are proud of the way he's endured this last year and look forward to seeing how things will (hopefully) continue to improve this next year.

At last, A GOOD NIGHT'S SLEEP

I woke up this morning and realized we hadn't heard from Hewitt ALL night long. After a quick panic, and a check of the video monitor, I was able to rejoice that he made it through the whole night for the first time in 7 weeks! It was similar to the feeling you get when your newborn sleeps through the night for the first time. You wake up worried something is wrong and then quickly realize it's all for nothing...that you finally got a whole night's rest and how wonderful that feels! I guess it's a good preparation for July. A nice reminder of those sleep deprived days that we will soon be enjoying again!

7 weeks!

We have hit 7 weeks and are so excited! Hewitt is back to his old self...curious, talkative (understatement), obnoxious and sweet. He has an insane amount of energy and is still struggling with some social skills, but I believe he'll get there! We are loving (sometimes with an effort) every minute of him and feel so thankful to have such a great break. He is singing songs he's learning at church, and last Sunday he even went up front to lead some hand motions for a song with some other kids. I wish I would've known it was going to happen so I could've recorded it...it was such a great moment to witness. He had no clue what the hand motions were before he went up but watched the others and caught on quickly...loving every minute of the attention! He and Titus have also been developing a very sweet relationship over the last few weeks that did not exist before this break. They are little buddies and love to get silly and laugh together.

It feels good to be able to write a weekly update with good news! The sleepless nights are going better. Not perfect, but it feels more manageable. Thanks for the prayers!

Still seizure free

Yesterday was 6 weeks without any little seizures! 4 weeks without any at all. We continue to enjoy having our boy back, and love watching him play like a 3 year old should. We just praise God for this change and are trying to enjoy it while it lasts! Thanks for your continued prayers. He is still struggling with getting a full nights sleep. He wakes often, scared and crying. We think it's a side effect of the new med and hope it goes away soon. It has been 6 weeks though, so I'm beginning to wonder! It would be a prayer request for the whole family. He often wakes up the other boys when he wakes up screaming or crying, not to mention us! We are all slightly sleep deprived these days. I will try to get an update again soon.

He's Back

I've been waiting to post this because it seems like whenever I do things change again, but I'll post anyway because it's just so exciting.

Hewitt hasn't had a seizure in 6 days.

It's amazing. Last week, Friday, Saturday, Sunday, Monday and Tuesday, we were absolutely distraught because he was having so many. Last Sunday we finally gave him his emergency meds to stop it because we thought he was in non convulsive status. He was just sitting, barely talking and constantly drooling. You couldn't carry a conversation with him. It was heartbreaking. Sunday, Titus came down with a fever and then passed it on to all the other kids thoroughout the week. Hewitt was the last to get it. It was the first serious fever he's had since we've started this whole journey and if all the seizures he was having before weren't enough, he started having more. In the time he was actually aware and conversational he was mean and angry and hard to deal with. We got his fever under control and the seizures slowed down and then on Thursday, we added a new med, Euthosuximide. It's a med to control absence seizures. He's on a fairly low dose, and only once a day. But, Friday, he woke up alert, happy and hasn't had a seizure since. He has been a doll all week. It's like we have him back completely. Usually when the seizures subside the behavior issues begin, but so far, things have been great. Still doing normal 3 year old things, but no more psychotic anger episodes. He's trying to obey, kissing and hugging everyone and he's told me twice (without prompting) that he doesn't have "ceasers" anymore. He's adorable and we're soaking up every minute of him.

Things are good now, but we know that could change at any moment. We certainly try not to live in fear of the seizures returning because it's way too early to tell if this med will make this change long term. But, we're learning (slowly)to take today and deal with what we've got!

He had an evaluation at the local school district yesterday and today to see if he will be able to be in a special preschool program for kids with developmental delays. This has been hard to swallow, but I think it will be good for him socially and developmentally. Without the seizures, he did great on most of the testing. It continues to amaze me how quickly his body recovers when they stop. We wait now to see what services they will offer and when he will start.

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.

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!

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."

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!

Hewitt

Hewitt at 4 months

Hewitt at 3 years

That last post is a hard one for me to follow because I just want to stay and rest there for a while. I like it there. Hewitt is definitely still doing well cognitively. He continues to improve and today got himself COMPLETELY undressed and redressed. Hayden and I made an interesting discovery. As I was giving Hewitt his most recent addition to his meds this morning Hayden realized that we give 2 of them, not 1! Everytime he had given Hewitt this medicine he had only been giving him one...Sunday morning he had a tonic/clonic seizure a little over 3 minutes and then Monday morning had another one. But, oddly most of Sunday afternoon he didn't have ANY seizure activity. So, now we're not sure if the increase in big seizure activity was because of one of the missed pills and if the decrease of seizure activity was because of one of the missed pills! ERRRR. I guess we will see now how he does over the next few days. It was nice to have a break from all of the drops though. Although, the seizures he had this morning were different than anything we had ever seen before! The only thing constant about this all is that it is always changing.

A GREAT DAY!

Today was a great day. Not only were Hewitt's seizures significantly less than the day before, but he was out in full force and it was so fun. It's amazing how quickly I forget what his little personality is like. I have had this shadow looming over me and it has briefly taken away the memory of him before this all began. We went out to a few places today and had the joy of watching him: he boldly introduced himself to anyone he didn't know, he proudly said his name, he told people how old he was, he pointed out a black car while we were out and said, "that's a black car, right mommy?" he followed 2 step instructions from me while getting ready for bed, he apologized before being asked, told me he will be very gentle with my hair (right after he pulled it and I said "ow"), he is so very charming and sweet...it was really encouraging. So encouraging that I'm sitting here crying while going over it all. We take such small things for granted sometimes. So, even though the day wasn't seizure free we had Hewitt back and that was enough.