I never know what to say

It's hard to decide what to share on this blog. On the one hand, I want to share everything - including all the pain - but on the other, I want to focus on the positive. Well, I'll do both this time. The pain includes the fact that Ben has stopped eating. He has a seizure every time he eats, so my guess is, he's associating eating with seizing and doesn't want to have a seizure. He used to eat with gusto, so this is really sad to me. I don't blame him, I wouldn't eat if it caused a seizure either. He has lost 1.5lbs in the last month, which is very concerning. Luckily, he's still drinking from a bottle, so I can try to get calories in him that way. I've been giving him formula with cream. I bet that is tasty. He's also a lot fussier than usual - is that because he's hungry? Or because he's teething? I have no idea.

On the positive side, he's become more active in general. He's shaking toys with his right hand, he's reaching out more, he's sitting up very stably, and he's babbling a little. I'm trying to figure out a way to stimulate him all the time. We are even thinking of converting one of our rooms into a gross motor development room, complete with a tire swing hanging from the ceiling!

A new therapist named Cheryl

Ben is seeing a new therapist - Cheryl Eichner. She is amazing with him. Ben moves and shakes during those sessions like I've never seen him move or shake! Cheryl says he's all boy, and really wants to move. He just doesn't know that he can... yet. With Cheryl, he rings bells, he pulls knobs, he goes for it. She tells me that he will do that at home too, eventually. I can't wait. In September, I really thought he'd be crawling by Christmas. We still have 3 weeks. Go Ben!!!

I want to kill these seizures

I hate them. It's like they are keeping Ben hostage. He is trying so hard to move and develop and learn. Every time he has a seizure, it just wipes him out. It wipes out his memory, his learning, and saps his energy. We still have a week and a half on Lamictal, the latest drug that we're trying. So far it doesn't seem to be working.

Luckily for him and us, Ben is still a happy little guy. Smiling all the time. He turns pages on books now!! Very exciting. We are told by every therapist who meets him that he's a quick learner. He just needs a break from these lightning storms in his brain.

It's been 14 months and 2 weeks since his first seizure. During these 14 months and 2 weeks, he has had anywhere from multiple seizures daily to 2 seizures a week. That's A LOT OF SEIZURES!!! Why can't we get them to stop? What else can we do? How much longer is this going to go on?

Chloe and Ben trying out their costumes

I had a dream

I dreamt last night that Ben elbow crawled, then got up on all fours, then walked like a drunken sailor. Enough to make me happy today :)

Living in the moment

Live in the moment, live in the moment, live in the moment. That's been my mantra for the past few months. But the moment is excruciating when Ben is having a seizure. When he's looking at me, crying, while his body is seizing. And I can't do anything to help him. It is so hard to live in that moment. It's unbearable. I think I can't bear it, but I do. I have to.

Thoughts of the moment

I was just looking through pictures on my computer and came across some pictures we took during Ben’s first 3 months. I would give ANYTHING to go back to that time. I am still filled with grief and despair and devastation when I look at those pictures. I would give almost anything to go back to that time, before we knew that Ben was going to have seizures every day. Before we knew that Ben wouldn’t be crawling at 17 months. Before we knew that we would be crying every day because we couldn’t help our son stop having seizures. Before we had any idea that we would have to worry about whether our son would be able to walk, to talk, to feed himself.

On the flip side, I realized yesterday that we are so lucky that Ben is doing what he’s doing. He laughs. I mean, really belly laughs. He giggles and makes eye contact while he’s giggling. He makes noises and complains and watches his sister run around the room. Sometimes he even gets excited to see me after I’ve been gone for a few hours. He sleeps well (as long as a seizure doesn’t disrupt him). He can touch things. He can reach out and hold his sippy cup or bottle while he’s drinking. He can touch my face. He can put his head down on my shoulder and snuggle up against me to cuddle. He’s generally a happy baby. I realized how lucky we were for Ben to have all these abilities when I met a 4 year old girl yesterday who has quadriplegic cerebral palsy. I have nothing to complain about.

I know that I want to get to full acceptance about Ben. I really do want that. But I also want to keep pushing him to do the most he can possibly do. I haven’t yet found a way to balance those two ways of being with him.

I also know that I want to stop suffering. My suffering about Ben is my choice and I can choose to stop it. It’s directly related to my thoughts and it is my job to choose thoughts that don’t result in pain, but instead in joy – both for me and for my children and husband.

Scary new seizures

Well Ben is having two new kinds of seizures - all mixed up into our days. They are scary because they look a lot like what his neurologist described as infantile spasms months ago. Infantile spasms are a particularly detrimental kind of seizure because they are often accompanied by irregular brain activity that lasts long after the seizure and can prevent learning and development. Oh my. I'm more than a little nervous. We have scheduled another EEG to determine whether Ben's brain activity is normal or not. I hate all of this so much. I wish Ben could just get a chance to grow without this handicap in his brain.

That being said, we still have so much to be grateful for. He smiles every single day. He often laughs and giggles. He knows when I've left for a few hours and is sooooo happy to see me when I return. He can sit now (although he does fall back, I think on purpose!). He can even stand if I put him up against a table or couch. He looks so cute doing that, I can't wait to see him stand and walk on his own. He knows his sister and loves to interact with her. He eats really well without a feeding tube. He is down to one medication. All great things to be very, very thankful for.

Back from our trip

We came back from a two week trip on Monday night. Sadly, I have only limited pictures documenting the trip! I guess I have my hands full and can't handle a camera as well. Ben and Chloe were both amazing travelers! We were in Vail for a week and then headed to the midwest (Madison and Davenport) to visit aunties and uncles and cousins and to celebrate the marriage of our dear cousins Anna and Joseph. A great time was had by all! Ben met, among others, his Uncle David for the first time and was in love with him. Uncle David is a natural with babies, it seems :) I wish I had a picture of the two of them - does anyone have one?

Ben is no longer taking one of his anti-seizure drugs, topamax. And no increase in seizures! Thank heaven. Since topamax has been taken out of his system, he seems more curious and alert to his surroundings. It makes me wonder how much these drugs have affected his development during the past year. He is still taking on drug - klonipin, a valium-type - but this drug doesn't seem to dull is affect very much. Although I wouldn't really know that until we took him off that drug too. He has about a seizure every 5 days.

Ben is still trying to get up on all fours on his own and is very active, moving arms and legs while lying down. He has started turning his upper body to see and touch things around him which is fun to see. One of his favorite activities is testing different surfaces for sounds by scratching them. He is as sweet and happy as ever.

Progress

Ben can now hold himself in the all-fours position for minutes!

Life Continues

So the seizures are still happening 2-3 times a week, but Ben is handling them really well. He's a tough little guy. Really tough. And so, life seems to be OK despite those seizures.

Ben is eating well - when he so chooses! He is very clear about what he likes and dislikes, but communicates it in a much different way than Chloe did. He just opens his mouth for food he likes, and keeps it closed for food he doesn't like - all the while looking straight at us with a smile on his cute little face. No fuss. Chloe was much more involved in her communications!

Today, for the first time ever, I saw Ben go up on his hands, and then pull his legs underneath him. He got into an all-fours position all by himself. He's been working on that move for months but when I saw it today, I yelled to Sami and Chloe, "Did you see that?! Did you see what he just did? Oh my god, he just got up on all fours! Did you see it?" They were both a little startled by the intensity of my reaction.

I ask Ben's neurologist every time I see him, "Will Ben walk? Will Ben talk?" The answers to those two questions has always been, "I don't know. Only time will tell". Last week, Dr. Sullivan changed his response. He answered, "Yes." Tears came to my eyes (as they are now just thinking about it). I feel like if Ben walks and talks, then he will have an acceptable quality of life. He will be able to handle anything else. I hope that's true.

Ben laughs out loud all the time now. The other day I picked him up like a sack of potatoes, and he just giggled and giggled. I could hear his giggles over my shoulder as I walked up the stairs.

Chloe continues to adore her little brother. When she fantasizes about family outings, she always puts a pretend seatbelt on Ben so that he's safe. We were reading a book that had a kayaker in it. Chloe said, "Mommy, can we all go in a kayak tomorrow? You, me and Ben and daddy? You and me can sit in front and Ben and daddy can sit in the back. And Ben can have a seatbelt on so he doesn't fall out."

20' Post Tube Surgery!!

What a champ!

A few good days

These past few days have been wonderful! Such lows, such highs. We even went camping! Ben and Chloe both slept in a tent for the first time. Side by side, surrounded by Aaron and I. They were so cute. Ben has been doing really well, it seems like he has turned a corner - although I hate to call it that because it's not linear. He's been a very happy little baby. He laughs (to himself, often, which is adorable) and interacts with us all. He pulls Chloe's hair - which she doesn't mind! She gets excited when he reaches out to grab anything, including her hair. Now, really, what 3 year old does that? She is amazing. She celebrates every triumph of his. She also tries to entertain him. Here, she set up a chair so that he could watch her show off her moves on the trampoline.

More seizures

The seizures have returned. Ben has had 3 seizures in the last 4 days. It is such a bummer. I try to be grateful for everything that we do have - smiles (lots of them!), eye contact, movement, sounds, ability to eat. It could always be worse. Can you believe, though, that after almost a year of this, I still find myself getting hit full force with the reality of his life? Some days it feels like a punch in the stomach.

Another seizure today

Oh boy. Now I am worried. Another seizure within a week. This one was longer than the one last Sunday. I wish I weren't so worried. I wish I could handle it better. I just don't want Ben to have to live with Epilepsy. Life is hard enough. Can you imagine adding unpredictable seizures to the mix? He won't be able to take a bath alone. He won't be able to learn how to ski. He won't ever get to play High School Sports, be on the Rowing Team, swim, get a driver's license. I remember being a gate agent at the airport when someone in the wait area had a seizure. He convulsed on the floor, and then woke up surrounded by strangers who had just witnessed his seizure. I can't even imagine what it would be like to have that happen to you. I'm sorry this post is so depressing. I've tried very hard to only focus on the positive, especially in these blog posts. Today I'm just not feeling very positive. I worry for Ben. I worry for Chloe. I even worry for Aaron.

Ben after his acupuncture treatment

One seizure in almost three weeks!

Ben had a seizure on Sunday - after 17 seizure-free days. It was a quick seizure, not at all as devastating as they had been. So that's great news. This time is critical - if they continue to abate, it is really, really good news. But, as Dr. Sullivan says, 3 weeks is just too early to tell. We just keep hoping for more and more seizure-free days.

It's hard to know what is working for Ben. Is it the acupuncture? Is it the medications? Is it growth? At one point - which seems like an eon ago - Dr. Sullivan did say that there was a chance that he would outgrow the seizures. He said it was a small chance, and that they could come back at any point in his life, but it is still a chance.

Developmentally, Ben is progressing wonderfully. This is a huge lesson in patience for me (I don't know if y'all know this about me but I've always said, "Patience is a virtue - just not one of mine"). People who haven't seen Ben in a while can really see the progression. He is pushing up on his hands more, reaching out for toys (VERY exciting), pivoting in circles on the floor (an important precursor to crawling) and sitting better. He still falls over from a sitting position, but his therapists believe that is because we are always there to catch him. So the prescription is - don't catch him, and then make him do a situp to get back to sitting. Hopefully that will discourage him from relying on us. No one likes situps!!

7 Days 9 Hours And Counting :)

Ben's EEG Results

Well, it's complicated! A lot has happened since Ben's hospital stay last week. Let me give you the rundown:

Wednesday: We catch a seizure on the EEG during the night. It is an awful seizure and Ben ends up crying inconsolably afterwards and then while the leads are being removed. I've never seen him cry like that. Nana and I are both almost in tears ourselves.

Thursday: We get the bad news from Ben's neurologist, Dr. Sullivan, that Ben's brain is showing abnormal spikes during sleep - actually, during the period before the seizure. Dr. Sullivan strongly recommends starting ACTH injections. ACTH is a steroid, and is used to treat this abnormal brain activity that babies sometimes develop in the presence of seizures. It is incredibly hard on a baby's body, and requires almost twice the adult dose. No one understands why steroid treatment can sometimes result in normalizing brain activity. We had been through a milder version of this treatment back in November. That time, Ben had no seizures during the course of steroid treatment. But the day after the treatment ended, the first day off of steroids, he started seizing again. The steroids led to sleeplessness (Ben was sleeping only 3-5 hours a night), constipation, weight gain and bloating. I cry thinking that he will have to go through all of this yet again. He is just now starting to get back on a regular schedule after the ketogenic diet. He's been subjected to treatment after treatment since he was 3.5 months old and all of these treatment have put him through the ringer in one way or another. They disrupt his entire body's functioning. They screw up his digestive system, his sleep cycles, his appetite, his liver and kidney functions. I am dreading what a month-long course of daily steroid injections will do to his overall well-being, and am wondering if it is really worth it. Ben does not show this abnormal brain activity during his awake time, or even during all of his sleep time. It's just in the period leading up to a seizure.

Saturday: We see Dr. Liu, Ben's acupuncturist. His view of Ben's seizures is that they are an indication that the underdeveloped part of Ben's brain is continuing to develop and make new connections. He tells me not to worry, that he can tell that Ben is getting better, and that we just need to give it time. Time without drugs. He thinks that steroids are the very worst thing we could do to Ben right now. They deplete the body's energy stores and lead to decreased kidney and liver function. Ben needs all of his organs to be as healthy as possible right now in order to give all of his energy to developing the affected areas of his brain. He predicts that Ben will not have seizures while on the steroids but that they will return as soon as the steroids end - which is exactly what happened last time Ben was on steroids.

Monday: I ask Dr. Sullivan if there is anything else we can do besides ACTH treatment. I tell him that I do not want to do this to Ben. He listens and understands, and says that we need to do something. Dr. Sullivan emphasizes that this abnormal brain activity can result in a plateau-ing of Ben's development. He says it is in Ben's best interest to treat it as soon as possible. He gives me another option: Klonipin (a Valium-like drug) for a week and then recheck his EEG. We agree to this course of treatment. Dr. Sullivan has just written a chapter on Infantile Spasms (these are seizures in babies that are accompanied by abnormal brain activity even when the brain isn't actively seizing). I ask him if I can read this chapter to learn more about it.
I start Ben on klonipin.

Wednesday: We go back to see Dr. Liu. I tell him that we did not start steroids. But I also have to tell him that we did start another drug - klonipin. He asks when Ben last had a seizure. I say, Thursday. "And you started the additional drug on Monday? Why?" I tell him that Dr. Sullivan thinks that the abnormal brain activity during a non-seizure period is detrimental to Ben's development. Dr. Liu says Ben doesn't need drugs. They will interfere with his brain's ability to heal itself and make the right connections. He says that Chinese Medicine has been treating seizures for 5000 years. I ask him if he treats all seizures the same. He says no. He can tell what's going on with Ben based on taking his pulse and feeling his skull. By the way, he could tell from feeling Ben's skull where his brain was malformed and it matched the MRI that I saw. He could tell that the right side was more severly affected than the left (that also matches the MRI). He can tell that Ben's skull is filling out above the affected brain areas. I know this sounds crazy. I told him that I've been trained as a neuroscientist and that I know this western, reductionist way of thinking so well. I want to believe him but I need to learn more about acupuncture. He smiles and says he understands. He refers me to a book called, The Web That Has No Weaver: Understanding Chinese Medicine. He is very calming and reassuring. I ask him what his success rate with seizures has been. He says, "Very good". But he doesn't give me numbers.

These two ways of thinking about Ben's seizures are so different. In one case, his seizures are seen as a symptom of a malformed brain. Dr. Sullivan wants to stop the seizures completely, that's his stated goal. He is reasonable about weighing the benefits of complete seizure control versus the side effects of the drugs/treatments. But he is a pediatric epileptologist and his main focus is seizure control. In the other case, Ben's seizures are seen as the brain's attempts to heal itself. Dr. Liu sees Ben's brain as underdeveloped (not malformed), and sees the seizures as an indication that his brain is continuing to develop and form the right connections. I would bet that he believes that the structure of Ben's brain will change, if allowed. So, here I am. In the middle of these very opposing views of Ben's seizures and brain. I do not feel qualified to make the call. I just want to do what's best for Ben. I wish I knew. I wish I had a crystal ball that would tell me which course to follow. The stakes are so high.

Right now it is 10:30am on Thursday. Ben hasn't had a seizure in 6 days and 11.5 hours. That's the great news! If this keeps up, then maybe I won't have to make the call. Fingers crossed.

Catching a seizure at the hospital

We have checked into the hospital for EEG monitoring of Ben's brain activity. His neurologist would like to get some information on the type of seizure that Ben is having right now, and this information will help us decide which course of treatment to pursue next. This is our third hospital stay, and though we are old hats at it, we still have a hard time on the pediatric floor. It is always sad to see sick babies and children - and to be here ourselves. It is not a good feeling. Thankfully, uncle Brac and Nana stopped by to see us and cheer us up!! And, of course, we have our Captain chauffering us to and fro. What would we do without our family? We will not be giving him his evening dose of anti-seizure medication so that our chances of having a seizure tonight increase. So far the good news is that Ben's brain activity, while awake, looks completely normal. He does have some abnormal spikes during sleep but they are only mildly concerning, unless his seizing brain looks like he's having spasms. We will keep you posted!

Happy Birthday Ben!

Ben started a new playgroup this week and they celebrated his birthday with us. This is a wonderful playgroup run by some fantastic therapists at the Child Development Center here in San Francisco. Ben loved it! Seeing these pictures made him look so grown up to me. He loved watching the other kids - he talked the whole time at that table. He explored colored yoghurt with his hands, listened to songs during circle time and even ate corn chowder at snack time!

Seizure Update

Ben had another seizure last night and it is truly heartbreaking. He's aware of when it starts now and sobs. It's the worst position a parent can be put into - not being able to help your sobbing child. We have been decreasing his topamax - the only medication he's on - to see if he really needs to be on the very high dose he's on. We initiated that decrease with his doctor after hearing from an adult who has taken topamax that it made him feel "stoned". Not a great medication for a developing brain to be on, eh? So far he has tolerated a 33% decrease really well. In the last 4 days, he's only had one seizure. That's great news!

Ben gets his bottle from Chloe

7 Days Without A Seizure

Well the good news is that Ben didn't have a seizure for 7 whole days (and 4 hours, but who's counting?) Although we are disappointed that he had a seizure last night, we are hoping that this will be a good trend. Developmentally, he continues to make great progress, pushing up on his hands, and sitting with only slight support. He's even been rolling a ball!

So Far So Good

Ben has been out of ketosis for about 5 days now. He is doing really well. He is moving around - in circles on the floor, and pushing himself backwards. He is sleeping through the night again. He hasn't had a seizure in almost 6 days - a record! We are cautiously optimistic. I say cautiously because, well, to be honest, we are afraid to even talk about it. His doctors say there is no relationship between ending the diet and the lack of seizures. But they can't tell me why they think that. We'll just have to wait and see. In any case, I did want to share the good news because it is GREAT news :)

Weaning from the Ketogenic Diet

Well, it's time to start the weaning process from the ketogenic diet. It has not helped reduce the frequency with which Ben has seizures. In fact, he's now having anywhere from 4-6 seizures a week. Before we started the diet, he was consistenly having only 2 a week. Curiously, every Wednesday and Saturday, like clockwork. It has become much less predictable since starting the diet. We are disappointed that yet another intervention has not worked for Ben. But he continues to make progress developmentally, and that is really good news. As his Nana says, "Ben is just giving us more time to enjoy all the baby stages". Good ol' Nana!

Hangin' on a beautiful sunny Sunday afternoon

Ben's loving big sister

While Ben was having a seizure last night, Chloe helped me comfort him. Of course we were all a little anxious during that time. The next morning Chloe woke up and said, "I wanna see Ben!". Then she put her cheek next to his and said, "See, Mommy, my cheek is sending my love to Ben's cheek".

Giving Acupuncture A Try

Ben went to see a new doctor yesterday - Dr. Liu, a well-respected and effective acupuncturist. I found out about him from the mother of another child who had seizures. Her son had been having seizures for 2.5 years when they somehow found Dr. Liu. After weekly visits for about 6 weeks, her son stopped having seizures. He is now 4 and has been seizure-free ever since. They now go every couple of months.

Ben lay on the examination table, babbling away to Dr. Liu while he inserted needles in his ankles and wrists, and then his head. He didn't mind them at all, and seemed to feel right at home. The whole visit took about 30 minutes.

I have high hopes for Dr. Liu. Like he says, drugs haven't worked for Ben, so let's see what acupuncture can do.

Ben in action

Unfortunately, the ketogenic diet does not seem to be working for Ben. He continues to have 2-3 seizures a week. We still have about two weeks to go before the doctors feel like we have given it a fair shot. So we're still hoping for a miracle.

In the meantime, he is continuing to improve with his movements. He is sitting up much better and is frustrated when he can't move. That's a great sign - it means that he's motivated to move! Here is a series of images that shows him sitting, then falling over, then getting his hands out all by himself. We were so happy for him! It's the beginning of moving around independently and we can't wait to see what he does next!!

Toddler tidbits

Ben's 3-year-old cousin Braeden is served scallops for dinner. He doesn't want them. His mom says, "Braeden, why don't you want scallops tonight? You love scallops!". Braeden says, "Mooom, don't you know I change two times a day?"

Ben's sister Chloe is transitioning to a big girl bed. Yesterday, I had a hard time keeping her in her bed for naptime. After many delays and trips to the bathroom for one last poop, I said, "Ok, Chloe, let's try one more time. Please put your diaper on and get into your bed." Chloe then proceeded to give me two choices: She will put her diaper on and get into MY bed, or she will NOT put her diaper on and get into HER bed. "Mommy, those are your options. What one do you want?" When did I become the one being given options?! Hey, I'm the boss, right? Right?

Ben's learning new moves

Despite some recent setbacks in the frequency of Ben's seizures (he's had 5 in the last 6 days), he is progressing physically. Peggy has been teaching him some new moves and I'm excited to watch him start using them. He pushes way up on his hands now - as high as he can go - and can hold it for up to a minute, it seems (although I've never timed him, hey that's an idea, let's see how intense I can get catching all of his progress ;)

He is smiling and reaching and talking and sitting up in his high chair. He's rolling and rolling and rolling. The only one who can truly get a belly laugh is still daddy :) He loves his daddy.

Who knew poops had a life?

Sometimes, when Chloe is sitting on the pot, we have to wait for the poop - as we all do sometimes, right? Only remember we are dealing with a toddler here, so part of the dilemma is to figure out whether there really is a poop coming or whether this is a clever delay tactic so as not to have to go to bed. It's the best one she's come up with (according to her) because how could we possibly deny her the chance to go potty before bed?

I say, "Chloe, are you sure there's a poop coming? We've been waiting a long time now." Chloe says, "Mommy, of course the poop is coming, but she has to stop for coffee first. And then she has to have breakfast and dinner and lunch and a snack and then she's coming. (Duuhhh, mommy!)

The Brain That Changes Itself

There's no limit to what Ben will achieve. I've been reading this book entitled, "The Brain That Changes Itself", by Norman Doidge. He's an MD who tells the stories of individuals and their doctors and therapists who have regained function after incredible brain injuries. The stories run the gamut of brain injury. The take home message is very clear - the brain is amazingly plastic and can rewire itself to regain lost function. If anyone out there is interested in brain plasticity, this is the book to read! It's very encouraging, and given Ben's MRI - which I've seen - I feel like there is absolutely no reason that he will not be able to function like the rest of us. His one obstacle may be that he is incredibly content - wherever he is! This can be a good thing in life, right? But, right now, I want him to be motivated to move :)

The Anat Baniel Method of Feldenkrais

Ben has been seeing Peggy Chipkin, an Anat Baniel Method for Children practitioner, since January. This method uses gentle touch and manipulation to help the body learn how to move better. We found Peggy through Mom's nursing school letter, and lucky for us, she has been working with Ben and getting him to achieve amazing progress in the last few months. We are so happy to have found her. Ben loves his sessions with her, and talks the whole time! He has started pushing up more and more on his hands and reaching for and grabbing toys. We are so happy for him, and I know there are no limits to what he can achieve.

Therapy wears me out :)

Ben's Appointment at Stanford Today

Ben had his first follow-up appointment at Stanford today. Though the seizures are continuing to happen regularly, they seem to be lessening in intensity and length. They now say that could be a good sign. They've also adjusted his formula so that he will enter into a stronger level of ketosis. We monitor his ketone levels twice daily and they have not always been large, so there's some tweaking of the diet to be done. All in all, they were hopeful. They saw no reason to rule out yet that the diet will not work, so that leaves us with hope! We love hope. I am breathing a lot today :) in and out, in and out, in and out.

Update on Ben's seizures

Ben had his mid-week seizure today. He has been having them regularly every Tuesday or Wednesday, and then again on Saturday. We were hoping this pattern would change on the ketogenic diet. Some good news is that instead of a cluster of 40 or 50 seizures lasting 10 or more minutes, this one only lasted for about 5. It also seemed less intense for him. Apparently, the quality of his seizures will continuously change as his brain grows, so it's hard for his neurologist to admit to us that this lesser intensity is a sign that the diet is working. But it's hard to believe that it's unrelated! So, there is definitely still hope for the ketogenic diet.

On a happier note, Ben got his first tooth today! It's his bottom right one, and it broke through during the night. HIs bottom left tooth is also about to pop out. I remember Chloe not getting her first tooth until about 10 months too... But I don't remember her being so grumpy about it! Is it true that boys have a lower pain threshold than girls? ;)

We have a nonchalant progressor!

Ben has been nonchalantly reaching for and grabbing toys all day! He was doing it so nonchalantly, in fact, that I wasn't sure he was really doing it. But there is not doubt in my (or Aaron's or Nana's) mind that he is, in fact, reaching for and grabbing toys!!! It's amazing and we are so happy to see him doing this. He puts them in his mouth and swats them off his high chair table. This is big stuff. Big big big big stuff! I am so happy for him.

"It's just beautiful in itself"

Chloe found a rock on her walk yesterday. She brought it home to give to her teacher, Cindy, to put on their nature table at preschool. When our friend asked if she would like to decorate it with glitter glue or paint, Chloe looked at it, thought about it, and said, "No, I think it's just beautiful in itself".

The Ketogenic Diet

Ben started the ketogenic diet last week. This is a very high-fat diet; in fact, 90% of Ben's intake is fat. That's a lot of fat! The result is that his body is getting its energy from breaking down fat instead of sugar (kind of like the Atkins diet), and puts him in a state of ketosis, with lots of ketones floating around. Somehow, this state can sometimes control seizures. There is a 33% chance that this will stop all of Ben's seizures, a 33% chance that it will decrease the frequency with which he has seizures, and a 33% chance that it won't help. So far, in the first week, there has been no change, but we are told that it can take up to 3 weeks for it to work. So we are still optimistic that he will have some benefit from it. The good news is that Ben loves the new formula (it's flavored with vanilla) and is eating with gusto. Maybe too much gusto :)

Chloe's zen moment

When Chloe is hopping around trying to hold her pee to make it to the toilet, daddy says "Stem the tide, Chloe, stem the tide!" Chloe says, "Stem the tide? NO, daddy, BE the tide!".

Happy sleepyhead

Ben is pushing up on his hands

We are very excited to see Ben pushing up on his hands! He is also rolling from both from his back onto his belly and from his belly onto his back. He's no longer content to watch the world from a lying position; he wants to be in a sitting position, so he spends a lot of time in his highchair now too. He likes the change of scenery :) Another really exciting progression is that he has started pushing up on his hands when lying on his belly - exactly what he needs to learn to crawl. He can pull his legs underneath his little bottom so he's got that part down. He has started babbling and some days just talks up a storm.

Chloe is so sweet to Ben. Yesterday he wasn't feeling well, and she went up to him and said, "Ben, I love you soooo much". Then she kissed him on the head, and patted him and walked back to her kitchen to make some more milk with orange juice and chocolate - her favorite drink.