Happy Holidays

Three men

the three men :-)

While we are weaning off the vigabatrin we notice more short seizures, but on the other hand Kalle is more awake more often. It's that difficult balance we have to deal with. Weird how the AED's (= antiepileptic drugs) work. Even though the drug didn't reduce the seizures (and we think that it didn't) it might still cause more seizures while weaning it off. Some people say that some AED's are more addictive than heroin. We are now halfway....

Weaning off, kidneys, Saito, cup & growth hormones...

So we started weaning off the Vigabatrin (Sabril). From 2x 600mg / day we're now at 2x 450. We see a little more seizures, but we are not sure if they are a result of the weaning. We also started giving Kalle a small dose of antibiotics every day, to prevent him from getting bacterial infections on top of all the viral infections he gets anyway. Lots of kids with a weakened immunsystem take antibiotics during the cold months. We hate to give him another drug, but it would be much worse if he would get pneumonia. Other parents of kids with similar problems as Kalle noticed that the antibiotics have some effect the epilepsy: some noticed more, others less seizures. Great. So we don't know what's going on. Kalle also had a pretty bad cold. Sneezing, coughing... The last two times he had colds we saw more seizures after the cold was gone. Don't ask why. So we keep on guessing where the increase of seizures comes from.

During the last couple of months Kalle's urine was tested three times. It's important for all kids on the ketogenic diet because they get kidney stones much more often than other kids. The test didn't look okay twice, but was okay the third time. An ultrasound of his kidneys looked fine. What a relief.

We participated in an interesting workshop: Saito, a japanese massage technique for special needs kids. It's all about loosening up the muscles by shaking them so the kids feel more relaxed. If they feel relaxed they are more alert and more capable to learn. And if you loosen up the muscles around the spine it's good for the development of your brain, they say. We're not sure if Kalle really liked it, but we will try Saito for a while. It's supposed to be fun, not a strict routine. We'll see.

We let Kalle drink out of a cup at least once a day now, just to practice. His record: 100 cc! Not bad :-) He still gets five bottles a day, but within the next couple of months we want him to use the cup instead of the bottle. He will loose his sucking reflex at a certain moment. So we have to practice drinking from a cup now if want to avoid a feeding tube.

The pediatrician wants to check Kalle's groth hormone level cause he is way too small for his age. They tried the test half a year ago. It didn't work cause it's extremely difficult to draw blood from Kalle's very hard-to-hit veins or even his fingers. This time the test didn't work out because they couldn't check his blood pressure (difficult if you have a little more fat around your arms). So we still don't know if he has enough growth hormones. It's important to know cause it influences the way the bones grow. Not enough hormones might result in serious problems, not only in a smaller Kalle... Today they took a photo of his left hand, in order to check the bone age. This might be another method to see if something is wrong. Or Kalle would have to spend a day at the intensive care unit where he would get an arterial line to draw blood and check the blood pressure at the same time. The doctors are still thinking about the next step.

No, we are not getting used to all those doctors appointments, the daily worries, the unsecurity, the sadness. We are happy if we see just a glimps of Kalle, between those stupid seizures. He still loves to drink his bottle, he stretches his arm and lifts it if it takes too long to move the bottle to his mouth. He recognizes it, he makes sure we understand that. Beautiful. We hope to see ore of him in the future, but we are not sure if this is just wishful thinking or if it will become reality.

No operation

Finally....we got the results of the reevaluation of Kalle's EEG's and MRI's. Well, we don't actually have all the results, but the doctor told us what the consequence of the results is:
Kalle is not a candidate for epilepsy surgery. no surprise for us because Kalle has so much damage on both sides of his brain. So no surgery. No shaving off his pretty curls, no drilling a hole in his skull. No cutting in his brain.

What now?
The doctor suggested another antiepileptic drug ('AED'). But we just weaned off the sodium valproate ('Depakine'). Now we want to see if Kalle feels better or worse. But his other AED, vigabatrin ('Sabril'), needs to be weaned off, too. Usually you shouldn't take this drug longer than 6 months because of the possible side effects: you might develop tunnel vision which never gets better once you got it. Kalle started more than a year ago (and there is no way to check his eyes cause he can't tell what he sees).
The neurologist doesn't want Kalle to be without any medication. He expects more seizures. On the other hand: the meds never showed any effect on the EEG's. So now we decided to start weaning off the Vigabatrin veeeery slowly. If we might see more seizures Kalle will get another AED.

Still lots of phlegm in Kalle's respiratory system. Not good. We hope that weaning off (a part of) the Vigabatrin also means being more awake. That might help Kalle to swallow 'better' and cough easier. We'll see.

Tooth no. 9 is almost there. Kalle doesn't like those weird things in his mouth. But at least it looks cute :-)

Big brother Kalle chilling with little brother Liko

Busy busy busy

Okay...so now we have two kids. Big brother Kalle and little brother Liko. We are in the middle of becoming multitasking super parents. Paying bills while feeding, cooking with one hand, holding two kids in one arm while checking our emails with the other... No it's not easy. At all. At least Kalle sleeps pretty well during the (short) night so we don't have two kids asking for attention in the wee hours....
Taking care of Liko automatically means we don't have that much time and attention for Kalle as we used to have. That's difficult. But on the other hand: he seems to be 'fine', he doesn't cry more, he doesn't have more seizures. So I guess it's more difficult for us than it is for Kalle.

The huge amount of phlegm still is his biggest problem. The doctor said we shouldn't underestimate the influence of the teeth breaking through. There are 7 now, including 4 molars. Within just a bit more than 2 months. Getting teeth means drooling 24/7. Maybe Kalle('s body) just doesn't know how to deal with this.

No further news... still waiting for the results of the EEG-reevaluation, in order to analyze the possibility of epilepsy surgery. If it is true that lots of seizures start at one spot in Kalle's head it might be an option. But somehow we don't believe that is the case. The meningitis damaged his brain in so many different places. It would be weird to find one major source of the epilepsy.

Kalle being cool in his new stroller

Teeeeeeeth!

Kalle had a weird week. He slept a lot, he didn't drink well, his face looked pale and the content of his diapers was...well...dfferent. We thought he might have some kind of stomach flu and that the arrival of little brother Liko might be a huge adjustment for Kalle.
We can never be sure what's going on with Kalle. It might be one thing or the other or a combination of things or something completely different. What definitly didn't help: there a two new teeth. They appeared without any warning. Today they were just there. No, of course not the last front tooth. Two huge molars, on the left side. One in the upper, one in the lower jaw. Surprise!

brothers

Big brother Kalle!

Last sunday Kalle's little brother Liko arrived :-)

Check out Liko's blog.

Kalle at the petting zoo

Went to a petting zoo yesterday. Lots of goats, interested in Kalle, his bottle and his new stroller...

(Kalle sitting in the stroller, Jan is the one without horns)

More teeth!

Still some coughing here, still some phlegm, but it seems to be slightly better than it was a week ago. We let Kalle inhale salt water 3 - 4 times / day which helps to loosen up the phlegm.
Drinking is still a problem. Somehow the coordination between sucking, swallowing and breathing seems to be more difficult for him right now. We still hope it's temporary, caused by the virus the discovered, last time we went to the hospital.

But Kalle is getting older and we thought this might be a good time to try something else: a cup! Cause with a cup he doesn't need to suck. It's going better than we expected. He doesn't enjoy it, but he is bravely undergoing the new drinking experience... It would be great if he wouldn't need the bottle at all in a couple of weeks or months. We'll see...

All of a sudden Kalle is getting teeth everywhere. He started with one front tooth (upper jaw), followed by two (!) molars (lower and upper jaw). Now the other front tooth in his upper jaw is definately present PLUS one front tooth in Kalle's lower jaw.That's five teeth within 5-6 weeks. That might explain some of the crying....


Kalle finally got his new stroller. Today a friend of Jan (who is studying for occupational therapist) helped us to adjust all parts of the stroller so every part fits Kalle's body perfectly. When it stops raining we'll take a nice walk!
The stroller came with two adapters for a baby car seat so we can talk walks with two kids shortly :-)

Better night

What a relief. Kalle had a better night... and so did we. No more barking, just woke up early and coughed a bit.

Still try to understand why this clown in the emergency room doesn't have a head. If I were a sick child and I would see a clown like this I'd freak out....









(rectification: In the last post I wrote Kalle had rotavirus 5 weeks ago. But it was RS-virus....something completly different.)

Another visit to the emergency room

Five weks ago Kalle had to stay in the hospital for two days. Lots of phlegm, most probably caused by RS-virus. After two days the doctors were sure enough that Kalle would be better instead of worse and we were allowed to go home.
Since then the phlegm is a growing problem. It just stays in the upper part of his trachea. Sometimes it goes a bit deeper, causing irritation. Kalle can cough really well, but he just doesn't cough enough. So we try to force him, but most of the time with no succes. He just coughes when he feels like it.

Yesterday, after a pretty good day, Kalle started to cough in the evening. But he actually sounded like a seal with a sore throat. It must have hurt cause he started crying, which caused more phlegm, which he tried to cough up, which must have hurt more etc.... We let him inhale NaCl (to loosen up the phlegm) and Atrovent (to widen his airways). But he woke up at night, sounding and coughing even worse. His lungs actually sounded terrible. At 4 'o clock we called the hospital. But since Kalle didn't have a fever and he still had the desire to drink they suggested we might as well wait until the morning. So we tried to sleep.

At 7:30 we drove to the emergency room, the only place where they can check all the things that needed to be checked, without an appointment . Kalle's coughing still sounded terrible, but he hadn't developed a fever, his lungs didn't sound worse. They immediately suggested Kalle may have a condition called pseudo-croup. Treatment: inhale once with a stronger medicine (pulmicort), inhale more often at home with NaCl / Atrovent and be patient. They made an x-ray of his lungs which was okay (they saw some phlegm - what a surprise - but no sign of inflammation that might lead to pneumonia). After 4 hours we went home. Now we hope that the next night will be better.

At the emergency room, when Kalle was crying, I made a very surprising discovery. I saw two (!) teeth I hadn't seen before. Not just small front teeth, but two molars at the right side of Kalle's jaw, one in the upper jaw, one in the lower jaw. It's pretty weird 'cause Kalle still doesn't have all of his front teeth, only one in the upper jaw. But I guess Kalle wouldn't be Kalle if everything would be just normal....

Kalle's last week was just another up-and-down-week. Bad days with lots of crying and more seizures, good days with less seizures, more alertness, more contact. His 2nd tooth is almost there. Drinking is kind of a problem right now 'cause after every bottle Kalle it sounds like part of the nutricion stayed in the upper part of his trachea. He can cough really well, but he just doesn't cough enough. We try to force him, but he has got his own ideas about it.... So let's hope this is just a temporary problem. He loves his bottles. Taking them away from him and giving 100% of his food through a feeding tube really isn't an option.

 Kalle relaxing on the big blue ball

Morning routine....

Teeth

Kalle's first tooth came through two weeks ago and the second one is already peeking through :-) Most kids get their first teeth much earlier. We thought that Kalle's brain damage might be the reason for the delay. Other parents of kids with epilepsy told us that AED's (antiepileptic drugs) harden the gums and make it much more difficult for the teeth to break through. Especially sodium valproate seems to have a big influence on the teeth. That's exactly the drug we are weaning off since last march. So maybe that's the reason why Kalle's teeth now start to grow.

Kalle also got his first haircut ever. I'll post a picture later. We saved one curl (still his first baby hair!).

Kalle is still coughing a lot and has lots of phlegm, especially after drinking his bottle. The ketocal contains so much more fat than regular nutrition...so that doesn't help. The epilepsy is going up and down, as it always is. Bad days, better days. The teeth coming through don't help. Kalle's neurologist wanted to introduce a new AED, but we convinced him to wait, at least until we weaned off the sodium valproate. We don't want Kalle to take three different AED's at the same time.

Last friday we went to the hospital for a regular blood and urine check. That's what the ketogenic diet protocol requires every three months. Early in the morning we attached a urine collection bag to his genital area (which looks kind of funny...poor penis...). But hours later the bag was still empty. We waited. And waited... Nothing happened. So they only did the blood work and gave us two urine collection bags, for the next time :-)

'Smile'

May 2010 Kalle's EEG revealed epilepsy for the first time. By that time we hadn't seen any seizures yet, but apparently the epilepsy was 'in his head' already. Kalle immediately got his first AED's (antiepileptic drugs). And how crazy it may sound, his first seizures started. The meds didn't work properly.
First we saw unvoluntary muscle jerks of one arm every now and then. Weeks later we noticed Kalle's first 'head turn': During that type of seizure he turns his head from the left to the right, his hands open and / or his arms move upwards. At the end of a head turn he sometimes smiles and even makes silly laughing sounds.
The head turns and the muscle jerks got stronger since last summer. In february Kalle had one of his first real clonic seizures that usually last 10 - 40 seconds: one or two muscle jerks a second. Arms, head, eyes, eyebrows, panic in his eyes. Sometimes he makes sounds, like he is really scared. His legs feel tensed, his feet are turned inwards. Those seizures look and feel pretty scary. If they would last too long (minutes) we would have to give Kalle emergency medication to stop it.

Kalle never smiled a lot. In the beginning he was too sick. Than he was recovering, unhappy. Just before the real seizures started there were a couple of weeks he smiled a couple of times. He even laughed when I tickled him. That happened maybe 5 or 6 times. What a blessing. The smiling and laughing stopped when the seizures started. That happens a lot when a baby gets West Syndrome, the type of epilepsy Kalle developped.

Sometimes people see one of Kalle's 'head-turn-seizures' and they think he is really smiling. I must admit, he looks cute when it happens. We know it is epilepsy, but at least it doesn't look as scary as his clonic seizures.
Today I thought: If the clonic seizures with the panic in his eyes make us sad and scare us, why shouldn't we be glad to see Kalle smile during a head turn, even if it's epileptic? Remembering how he looks if he smiles or laughs can help us to look forward and give us some hope that maybe one day Kalle will really smile and laugh again. Because that's what a happy kid is supposed to do.

Quick visit to the emergency room

Yesterday - after two days at home - we rushed to the hospital again. (Just to reveal the good ending: we didn't have to stay.)
Kalle was coughing so badly he started to cry. The crying caused more coughing, more phlegm. Breathing between the coughs became more and more difficult, he started to make terrible sounds while he was trying to suck in some air, his lips turned blue-ish...and we called 112 (Europe's 911). It looked like Kalle might choke every second and just stop breathing.
When the ambulance came they checked Kalle's oxygen level, which was surprisingly good, they sucked away some of the phlegm, drove him and me to the hospital. Kalle calmed down a bit, the doctors checked his lungs (sounded okay, just a lot of phlegm) and we were asked to decide whether we wanted to take him home or not.
So after a couple of hours we drove back home. Advice: If something like this happens again the only thing we can do is let Kalle inhale some of the med he is using anyway when he has a cold.
Let's just hope this incident was just a stupid coincidence and it will NOT happen again. It was pretty scary.

Back home

After two nights we're back home, with Kalle....relieved that we didn't have to stay two weeks, like the last time. The doctors just wanted to be sure Kalle is recovering instead of getting worse. And apparently he is! He is not feeling totally fine yet, still coughing and sneezing. But at least he really wants to drink, he's more awake and his lungs sound better.

They also checked his tonsils. Slightly bigger than normal, but not big enough to operate. When we took him to the ear-nose-throat specialist Jan thought it would be easier to use a wheelchair instead of carrying Kalle aaalllllll the way to the other part of the hospital (2 minute walk...). Just for the record: Jan is doing fine.

Hospital :-(

Looks like Kalle has some difficulties recovering from his nasty cold. Too much phlegm, not enough energy to drink all his bottles. But the reason we went to the hospital today was a very low temperature: only 35 degrees Celcius. We hoped they would only check his blood for bacterial infections (which they did...everything looked fine...so it's a virus). But like in january, the oxygen level is just too low. 100 is perfect, 96 is perfectly fine, but Kalle had 92, 93... His lungs sound okay though. Just a lot of phlegm that needs to come out.
So they gave him some oxygen and they want to keep him in the hospital for at least one night. That's the same thing they told us in january. We stayed two weeks... Let's hope Kalle feels better tomorrow and we can go home together. Jan is staying with Kalle tonight, I'm sleeping in my own bed (which feels terrible).
The crazy things is: There was almost no epileptic activity during the last days.

Tooth-update: almost there!

Sneezing + coughing + tooth (?) = bad

The whole family is sneezing and coughing. Including Kalle. He even had a higher temperature. That always makes us nervous 'cause a higher temperature often means more seizures. Welll....he had so many of them today that counting was not an option. Another thing that doesn't help to make him feel comfortable: Kalle is finally getting his first tooth! It's not there yet, but there are two white spots and some swollen gum in his upper (!) jaw. Yay!!! I bet he'll look even more cute with teeth :-)

Result EEG & an unnecessary visit to the epilepsy center...

A couple of weeks ago Kalle had his 24 hour EEG with video monitoring. Today we went back to the epilepsy center in order to talk about the result and possible next steps. After a 1:45 drive and some waiting we learned that the result still wasn't available. No official result in the computer yet. Great. The neurologist called the guys who analyze the EEG's so we would at least hear a small summary. Here's what he told us:

- Everything we suspected to be epilepstic activity actually is epileptic activity. No surprise to us.
- Most seizures seem to come from one place in Kalle's brain, which is remarkable because the brain damage occured in lots of different places. The 'good news': If this is really true Kalle might be a candidate for epilepsy surgery. They have to check earlier EEG's and brain scans and then discuss Kalle's case in some epilepsy surgery working group. That result was a surprise to us because it's so different from earlier EEG's. But: this was the first long EEG with video monitoring, so the results are much more reliable.

Just after we got home we got an email from the neurologist, with the official result... Additional information:

- Kalle has epilepsy 40-80% of the day
- He has slightly less activity at night, but his sleep isn't very 'effective'. Almost no difference between the differents stages of sleep.
- There's more activity on the right side of his brain, which also surprises us because there's more damage on the left side.
- Some activity matches the symptoms of West Syndrome, others don't. Possible conclusion: the epilepsy is changing (...so...?).

So now we just have to wait. That's okay. Kalle had some really good days during the last couple of weeks. Some really bad days, too. But the good days were good enough to accept the current situation. We won't think about possible surgery until the doctors analyzed the other EEG's and the scans. Just thinking about it for one second scares the hell out of us.

After spending hours in the car for nothing Kalle didn't stop crying and having short seizures for hours. I think he felt as grumpy as we did....

(good mood before we left to the epilepsy center...)

Kalle playing

Kalle has a pretty good day today...he slept well (not long enough, but hey....) and he played with his baby gym!

We're working on a short video compilation... here's what we have so far...

Two good days

Maybe I shouldn't tell that Kalle had two good days. 'Cause every time we have some good news something bad happens the next day. But maybe this time will be different :-)

Kalle has been pretty relaxed and alert the last week, especially the last two days. Just a couple of seizures. Greet, Kalle's physiotherapist, could actually do some exercises with him. Usually Kalle is not okay enough to do so.

Let's hope this is the new Kalle!

Weird days

The last week has been weird. Kalle definately has been more alert than the day we went to the epilepsy center. The seizures come and go. Hours with almost nothing, hours with way too many of them. Why? Who can tell. Maybe he's finally getting his first teeth? Maybe it's because he had a cold? We just guess.
We have an appointment at the epilepsy center on may 31 to discuss the result of Kalle's EEG. And - much more important - to discuss what will happen next. To think about the next AED almost makes me feel sick. We're afraid that it will destroy the very fragile balance Kalle has. On the other hand....what if the next drug actually does help...?

Back home

We're back home, after a day and a night at the epilepsy center. We're exhausted, tired. Carrying Kalle around with wires on his head and a small box attached to him wasn't exactly fun. Jan had to work in the afternoon and in the evening. He got back to the center after midnight.
We had a 'push button' we had to use every time we notice a seizure. This morning we heard that we pushed the button 50 times during 24 hours. That's terrible and confronting. Yesterday was one of those days the epilepsy monster was ugly and strong.
This morning, when we got home, we put Kalle in his bath tub and clean his head in order to remove the glue they used to attach the electrodes. At least we think he feels more comfortable today. Does he feel we're back home?
The doctor will now analyze the EEG. This may take a while, maybe weeks.
We're hoping for better days, with more alertness and less seizures. Can please somebody talk to that stupid monster??

At the epilepsy center

First day at the epilepsy center....lots of wires on Kalle's head, but he's doing okay. He showed some of his typical seizures, which is good in this case 'cause that's why were here. We have to carry around this black case where the 20+ wires are plugged into.

Camera's are following us everywhere (except the bathroom :-) ). We have a special button we have to push every time we see something we associate with epilepsy. It sets a mark on the EEG and makes it easier for the people who'll analyze the EEG.

No place like home...

It was a nice idea: Spending four nights in a vacation home near Cologne. We left on wednesday, after hesitating and discussing if we should leave at all. Why? Kalle didn't feel like waking up that morning. You might think 'great, so he slept really well!'. But he needs his medication early in the morning. So we tried to wake him up for an hour or even an hour and a half....nothing. We tried cold wet facecloths, we tried tickling, we tried rubbing his arms and legs, shouting at him....nothing. Just before I became really hysterical he slowly started to open his eyes. He drank a bit and fell asleep again. Then he woke up, drank a bit and fell asleep again.
After calling Kalle's neurologist we decided to start our vacation, in spite of Kalle's weird behaviour. The doctor said that Kalle might just be recovering from his cold. And, he said, if there was something serious going on Kalle probably wouldn't be awake and drinking between his naps. It felt wrong to drive to Germany with a child that wasn't okay. But staying at home didn't feel like the best option either.

Uncle Matti

The vacation home was okay, not amazing, but okay. It just wasn't our home, not our stuff, our couch, our pillows, our porch. If something serious would happen the next big hospital would be a 30-40 minute drive away.

The next day Kalle had many, many seizures. It was good to see him more awake (I was afraid he wouldn't wake up in the morning at all...). But his epilepsy was bad, really bad. He cried a lot, didn't feel comfortable at all. We figured that this is not a vacation and that we should go home. So that's what we did. On friday - after having lunch with my brother ('uncle Matti') - we drove back to Rotterdam.

It feels good to be back home. But Kalle's epilepsy is still bad. It's almost like there's something epileptic going on all the time. Clonic seizures, weird eye movements etc.... there's almost no comfortable moment. Instead there's a lot of heart breaking crying. Something we noticed every day now during the last couple of weeks. At least once a day, sometimes 3 or four times a day for 30 minutes up to two hours.
I can't describe what it's like to see your child uncomfortable almost all the time. What it feels like if you realize that love ain't enough and that there's probably no cure for this. Doctors aren't magicians.

The EEG on monday probably comes at the right time. Kalle is not okay. His EEG will be far from okay, no doubt about that (no, this has nothing to do with pessimism). We're curious about the epileptologist's opinion. What possible treatment will he recommend? A new drug? I'm afraid of what will come. Either way.

24 hour EEG

Got a phone call today from the epilepsy center... there has been a cancellation and now Kalle can have his 24 hour EEG on monday. Aahhh! So we have to be in Heeze (near Eindhoven) on monday morning, 8:30. One of us will be with Kalle all the time, until the next morning.
It scares the hell out of us. Kalle had some really weird days. Now we're afraid that his EEG will be really, really bad, worse than the last one. Do we really want to know?? And what about the consequences? We don't want more drugs, more side effects. But on the other hand...we don't want more seizures either.

Not much news

Kalle's cold is almost over. He's still coughing every now and then, but his lungs sound much cleaner than two weeks ago.
His epilepsy is as unpredicatable as it always is. Not much news. There are good days and there are bad days.The long EEG will take place at the end of may / first days of june. It's going to be 24 hours instead of 48 because we would have to wait even longer for a 48 hour EEG. We still don't know what the consequences of this EEG will be. Do we want a new antiepileptic drug for Kalle? What will the side effects be? We are still weaning off the sodium valproate ('Depakine'). Will this proces be finished by the time we will have to decide about a new drug? It just feels wrong to give him three differents drugs at the same time. I mean...it's not like he's taking paracetamol suppositories...

We try to be outside, enjoying spring, as much as possible. Our little front porch is the place to be. Kalle got a nice swing for his first birthday in december. We think he's enjoying it!

Cold

Sneezing and coughing, that's what we hear all day now. Kalle has a cold. A real one. It irritates him like it would irritate any other kid. But unfortunately - if he has a bad day - coughing triggers his seizures. It's almost like with every cough his head gets mixed up. We have to check his temperature, just to be sure there's no pneumonia trying to sneak up on him. His lower muscle tension makes it more difficult for him to cough properly. Hopefully he'll be better very soon.

Last week we went to see Kalle's osteopath (forgot to about it in the last post). After the treatment we had a completely different child: very alert, calm, relaxed, almost no seizures. It was weird to see Kalle in a way we have never seen him before. Weird because we realized that somewhere inside of him there's a child that actually can have a good time. But this child gets held down by this ugly monster called epilepsy. Unfortunately Kalle's good vibe only lasted one day. This afternoon we had another appointment. It would be great if the positive effect would last a bit longer this time.

Epilepsy Center

Went to the Epilepsy Center today. We have no regrets. It was a pleasant visit (as far as a visit to an epilepsy center can be pleasant). No hospital ambience at all, a quiet, clean building in the woods, with furniture in soothing green, blue and brown, nice staff.
The doctor was very 'undoctorish'. Professional, but without the usual distance. He agreed that a longer EEG (48 hours) with video monitoring would be useful to understand if what we see on the outside is or isn't epilepsy on the inside. We know that Kalle's EEG's are bad, so we don't expect miracles. But we just want to get a better picture of the seizures, in order to make better decisions in the future. Another thing is: Most of the times we - the parents - tell the doctors what we see when Kalle is at home. And yes, there are short EEG's that tell us that Kalle's epilepsy is bad. But it feels like a huge responsibility that some decisions are made based on what we see and on what we tell the doctors. A longer EEG might lift some of that weight off our shoulders.
We are now waiting for the EEG appointment (anywhere between now and a couple of weeks).

After a really, really good monday and a very, very bad tuesday yesterday and today were okay. A couple of seizures, but not as much as on tuesday. Kalle had a good night and was pretty relaxed during the day. Now he's sitting on Jan's lap, without diaper and pants (fresh air is good for everyone and everything)... he already peed three times while he is drinking his bottle :-)

Zzzzzzzz.............

Sound asleep.

(...maybe another hour and six minutes...)

Oh, and Jan doesn't mind to clean one of his guitars in the bathroom, babysitting :-)

Unpredictable

Okay, telling how good yesterday has been was clearly a mistake. What we feared actually happened: today sucked. The moment Kalle woke up I just knew he would have a bad day. And he did. During the first hour he was awake we already noticed more seizures than yesterday during the whole day. And while noises didn't seem to bother Kalle yesterday, today every little sound was a trigger for the next seizure.

Tonight we were supposed to perform for the first time since...what...october or november 2009? We rehearsed a couple of times with our dear friend Esther van Es. Nice songs, sounded great together. We had to perform in a little restaurant in Schipluiden, near Delft. Jan's mom came over to take care of Kalle at Esther's place, close to the restaurant. So if anything would happen Jan or I could check what's going on. We knew there was a little chance that Jan and Esther would have to perform without me, in case Kalle wouldn't be okay.
Half an hour before the gig  - while we were already in Schipluiden - I decided to return home with Kalle. He wouldn't stop crying, had lots of seizures, couldn't handle any unexpected noises. It was just too much. So what was supposed to be a nice evening turned into a big disappointment. Kalle can't help it, we can't help it. It just sucks.
Jan and Esther performed without me, Jan's mom drove Kalle and me home. Kalle calmed down in the car and slept a while. So I guess I took the right decision. I just wish it wouldn't have been necessary.

A pretty good day!

I have to be careful. Saying something positive often means that something negative will happen the next day. So I'm just a little glad that we actually had a pretty good day today! Kalle had a good night, woke up late, was relaxed. He only had a few seizures and he was very alert.

Yesterday the neurologist finally called. Last monday I had written an email, saying that Kalle is not doing okay, that he's having more and more unacceptable seizures. The doctor agreed that three antiepileptic drugs at the same time is not a such good idea. Those drugs tend to interact with eachother, but you never really know how. He wants to keep on weaning off the Depakine (sodium valproate) and replace it with another drug (probably while we're still weaning off the Depakine). But only a few are tolerated while being on the ketogenic diet. So we'll have to choose between Lamictal and Tegretol. Again, it's choosing between two options we hate. Nothing feels good. Giving any medication to a 1 year old child feels so unnatural, so wrong. And yet, we know we don't really have a choice. Well, actually we do, but the consequence might be that Kalle would have more and more seizures.
The chance that the next medication will work properly is less than 50%, the doctor said. With every new drug we try the chance that it works gets smaller and smaller. Unfortunately lots of kids with Kalle's type of epilepsy are drug resistant. But sometimes there is that lucky shot, one drug that actually does work. It's too early to stop trying. So we'll have to consider the options carefully.
Kalle just had a few good days. So we have time to think about the next step. Maybe, maybe it won't be nessessary after all...

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Better day

Kalle had a better day today. Maybe he felt that we sent an email to the neurologist yesterday.... (who didn't answer yet, by the way).

Kalle had less seizures, he was very alert every now and then, he didn't even need his nasal feeding tube. After so many bad days this was a good one. Or at least a better one.

We really learn to appreciate the small things, like sitting on our front porch in the sunshine.

Medical daycare - blessing or curse?

Kalle is not doing okay. His epilepsy is way too present, he gets irritated very easlily. Sometimes he gets seizures when he coughs or sneezes, when he hears a sound, when somebody approaches him. And sometimes they just come out of nowhere.
Yesterday he went to the medical daycare center, like (almost) every friday. He did okay when he was there, he even drank 2 bottles all by himself, didn't need his nasal feeding tube. But as soon as we got in the car the siezures started. Heavy, fast breathing, his eyes moving weird, tension, crying, the whole thing. It felt like the day at the daycare had been too much for him. Too many kids, too many noises, just too much going on, not enough rest. We noticed that before. We needed two hours to calm him down at least a little bit. So is daycare a blessing or a curse? Yes, Kalle needs to get used to other kids. It's good for Jan and me to have some time without Kalle (people say). But if this is the price we have to pay....
Kalle woke up twice last night, not happy. This morning the nightmare continued. Again: lots of seizures. We gave him some laxative because we know that not pooping means much more irritation. Without any result so far.
We don't know what to do. Why do those things always happen when it's weekend, when Kalle's doctor is not working and calling the hospital is not really an option?? Yes, we could talk to an assistant neurologist, but those people usually never met Kalle. They don't know his medical history. So we'll just hope Kalle gets through the weekend without any major incidents. And we'll call his doctor on monday.

No news, no news...

I wish I could say 'no news, good news'. Unfortunately that's not the case. It's just that there is not much to say. 'Cause nothing really changed.

We started weaning off the sodium valproate ('Depakine') 2,5 weeks ago. We think it never helped controling the epilepsy. When Kalle got this med for the first time (may / june 2010) we had never seen any seizure before, even though his EEG showed some epileptic activity. Shortly after the start of Depakine the first muscle jerks started. I still think that's kind of weird.

Weaning off an anti-epileptic drug can have the same effect as weaning off heroin. The body gets used to it. And even though the Depakine never might have helped controling the seizures, you still might see strong signs of withdrawal. Like more seizures, more crying, more restlessness, more irritablitily. That's why it's important to take it slow. Small steps. We have to be patient. Yes, Kalle sometimes showed more epilepsy during the last couple of weeks. At least, some days. He cried more, he was more irritated. But it's too early to state that the Depakine did in fact work after all. Because all this might be 'just' a sign of withdrawal. We hate it. We hate that we never know why things are happening. It's not looking for the usual solutions like: feed, change diaper, hold tight, put to bed,... It's a puzzle that might never be solved, no matter how hard we try, no matter how hard the doctors try. How do we have to deal with that?

So....why did we go??

Had an appointment in the hospital this (early...) morning. Kalle's growth hormone level had been tested twice in the last couple of months and both times it was too low. This hormone deficit might explain why Kalle is still pretty short for his age and why he didn't grow at all since october. On the other hand, this deficit would be caused by a malfunction of the hypophysis, a very small part of the brain. Usually this malfunction would also cause other problems, for example a malfunction of the thyroid. But that's not the case.

So...today they wanted to run another test, a bigger one. Kalle wasn't allowed to eat after 4 am. At 9 am we had the appointment. What was supposed to happen: Kalle would get Clonidine, some kind of drug that stimulates the production of the growth hormone. During the 2,5 hours after taking the Clonidie they would take blood from Kalle's finger every 30 minutes (= six times).
Usually they don't take the blood from the finger. They prefer inserting an intravenous line. But that's almost impossible 'cause Kalle's veins like to hide from the doctors :-). Smart veins... That's why they agreed to prick his finger(s) instead of torturing him for a long time with that intravenus line. What they didn't tell us: they needed a LOT of blood from his small fingers. Six times. If we would have known we would have told them that this is also a problem. Cause it was before. We thought it would be just the usual fingerprick that we know from testing Kalle's bloodsugar and ketone levels. But no... So guess what: that didn't work either. There was just not enough blood.
They called an anesthesiologist (good at finding veins). She tried to insert an intravenous line after all. Twice. Didn't work. Kalle wasn't allowed to eat anything during the whole procedure.
After 2,5 hours of waiting and trying to get enough blood we went home. Without any result. Just a nice visit to the hospital.

Kalle's pediatrician will talk to the endocrinologist to figure out if there are any alternatives. And if the test is so important that it really has to happen now, a.s.a.p. If so, they might need to insert the intravenous line under narcosis. Not exactly something to look forward to. Narcosis and epilepsy doesn't sound like a good combination. Narcosis always is a risk anyway. Even for healthy people.
So that was the first part of this tuesday. Oh, did I mention that our car broke down in front of the hospital? (It's fixed already, thanks to our car repair man hero who works just half a kilometer away from the hospital)


At least Kalle did a good job. He slept a lot, he was relaxed (except for the needle-moments). Even the epilepsy monster was asleep almost the whole time.

Good bye bloody tuesday.

Kalle and my nose

Terrible start of the week on monday. Jan had to stay home instead of going to work. Kalle cried hysterically for hours, had lots of seizures...and I couldn't handle it.
The last couple of days were okay-ish. Some parts of a day with lots of epileptic activity, others with hours of sleep or a pretty alert Kalle.
Two days ago Kalle looked at me while he was 'sitting' on Jan's lap. His left hand grabbed my nose and squeezed it really hard. I loved it. Those are the small things we carry like a present for a long time.
Went to Danny, the osteopath, today. He hadn't seen Kalle for two months. Danny was positive about Kalle's muscle tension and his alertness. Unfortunately he also noticed that he had never felt such strong seizures :-(  I guess that's the controversy of this moment....

A better day

Yesterday was a terrible day with lots and lots of seizures. Today was a better day, with less seizures. Kalle was more relaxed and so were we.
It's frustrating that this is not a puzzle we can solve. Usually if I really want to understand why something is going on I do some research until I find the answer. But this is an other league. Epilepsy is a monster. Unpredicatable and mean. Yesterday the monster was angry. Today it was present, but it was in a relatively good mood. We try to find out how we can keep it in its cage. We can't accept it's stronger than we are, stronger than the doctors are. So we just go on. We'll do everything we can to conquer it.

From bad to worse

The last two days were a nightmare. Kalle's epilepsy is getting out of hand. Today he had so many small seizures that counting them was impossible. He's sleeping now, after two hours of constant crying, fear in his eyes and lots and lots of muscle jerks: arms, head, sometimes legs. Calling the hospital in the evening isn't a good option because Kalle's neurologist only works during the day. There is always another (assistant) neurologist present, but most of the times it's someone who doesn't know Kalle, his medical history. So we'll wait until the morning. What the neurologist will suggest....we don't know. This situation is unacceptable. But trying another med...We'll see.
It's sad, so sad.

Not a surprise, but still disappointing

So yesterday's EEG was bad. Much worse than the one four weeks ago. And just as bad or almost as bad as the one Kalle had at the beginning of diet, in november. What a disappointment, what a setback. Another one. It's not a surprise because we saw so much more seizures during the last couple of weeks. But we hoped that at least the EEG would be as 'good' as the last one.

We also talked to the keto-team today: the two dietitians and the epilepsy nurse. What might be the reason the diet worked in the beginning and kind of stopped working after 2-3 months?

- Sometimes it just happens.
- Kalle's ketosis is realtively high, maybe slightly too high. That might cause more seizures. His nutrition needs some adjustment.
- One of Kalle's meds (Depakine, the dutch brand name of sodium valproate) might have a bad influence on the diet. There is no official proof for that, except lots of stories of keto-kid parents: They experienced that the diet worked during the first weeks, but then the seizures came back. Lowering (instead of increasing) the doses of sodium valproate helped making the diet work again. But it's not clinically proven, so we hope to convince the neurologist that it might be worth a try. The alternatives sound worse: another med, increase the doses....no thanks.

At least we decided to continue the diet for maybe another three months.

To be continued...

Never again

The 20 minute car ride yesterday from the medical daycare center to our home was the worst of all rides ever. 'I hope he'll be more relaxed at home than he was here with us', the nurse said. Unfortunately that didn't happen. Kalle was epileptic almost the whole 20 minutes, with short breaks. He was crying, with panic in his eyes, almost choking in his tears. I tried to drive with my left hand on the steering wheel, my right hand on Kalle's leg, almost crying as hysterically as my son. I decided to drive as fast as I could (and as fast as all the red traffic lights let me), instead of stopping and trying to sooth him. It was a nightmare and I hope this will never happen again.
Maybe a day at the daycare center just was too much for him. Too many noises, too much going on, not enough rest. Maybe yesterday was a day Kalle needed rest, a relaxed atmosphere. And maybe I should have listened to my gut feeling in the morning, telling me Kalle should stay at home.
He needed some time to calm down. The evening was okay-ish, even though I still saw lots of small series of muscle jerks. The night was much too short.
Very curious what the EEG on monday will tell us.

And I really hope the next post will bring better news.

Up and down again

During the last couple of days we saw a LOT of epileptic activity. At least we think it is epileptic activity. Shaking arms, weird eye movements, everything at once. Panic in his eyes, sometimes crying. Those 'seizures' only last 10-20 seconds, but sometimes they occur so many times during a short period of time that it feels a lot longer. Why aren't we sure if it's a 'real' seizure every time? Because sometimes it looks like an immediate reaction to a sound, a movement, a change of temperature (Kalle had 3 or 4 of those weird panic attacks during a 10 minute walk outside....it was almost freezing).

Because Kalle still has a nasal feeding tube he gets much more nutrition than he did without the tube. He now (almost) gets his perfect intake every day, according to the dietitians.The downside: his body can't control the amount he needs because we force him to take all the nutrition. If he would only get his bottle he would be the one to tell us when he has enough. I mean, we don't eat the exact same amount of food every day. Our body tells us what he needs. That's why this feeding tube is so unnatural. And why it also might be a problem: Too much food might cause obstipation. Obstipation might cause more seizures.

Next EEG will be on monday. We're extremely curious...hopefully it will help to understand what is and what isn't a real seizure.

In spite of all this trouble Kalle also surprises us. Sometimes he's so awake, he 'plays' with his favorite toy, he looks at us and touches our face. But it's hard to be happy if there's so much trouble going on. Let's hope it's just another phase Kalle has to go through. New or more medication just doesn't feel like an option right now.

The 3 months trial period of the ketogenic diet is almost over. Monday EEG, tuesday big talk with the dietitians and the neurologist. Everybody had been positive about continuing the diet, so far. But after the last week(s)...

I also read an article about the possible negative effects of one of Kalle's drugs on the diet (you can dowload the pdf here: site.matthewsfriends.org/uploads/pdf/DrugInteractions.pdf%20). It's not a medical study. It's something the folks of Matthew's Friends (huge homepage about the diet) noticed with lots of patients. So this might be something to think about.

Great job, holding his ball

well done Kalle.
Check out a new vid on Kalle's YouTube-channel starring Kalle holding his ball tight.

Better EEG! Confused...

Just talked to Kalle's neurologist. Kalle's last EEG is much better than the last one. It's far from 'good' (it will be never be good or normal), but for Kalle it's a step in the good direction.
It's weird because I noticed a lot of epileptic activity during the EEG. But apparantly not all of this activity appears on the EEG. So IS it epileptic activity or something else??

Of course, we're happy with the rresults. But we're also aware of the fact that the EEG is just a snapshot in time. It might have been a lucky moment. But maybe it is in fact the result of the ketogenic diet. Maybe it really helps.
Next EEG on february 28. We'll see...

The results of the metabolic tests are good. Great!

So much has happened during the last year. So many unexpected things. Almost all of them were negative. Because of that we're cautious about being 'too' happy after one 'good' result.
So we'll wait for the next EEG and hope that it was more than a snapshot in time.

Home, but...

Got home from the hospital on tuesday. Since then Kalle shows a lot of epileptic activity. A late reaction to his viral infection? We don't know. But it's scary. He cries a lot. Sometimes he wakes up, his arms shaking, with anxiety in his eyes, crying. That might be epilepsy, too. It would be the first expession of this terrible disease that obviously really bothers him.
Kalle's neurologist is not working this weekend, so I guess we have to be patient, wait until monday and see if it's still as bad as it has been the last three days.

HOME!

Finally. We're back home...WITH Kalle. After almost two weeks the doctors didn't want to deal with us anymore :-) Kalle is still a bit sick, but not sick enough to be in the hospital. Still some diarrhea, some vomiting, but his oxygen level was okay now, his lungs sounded much cleaner. We're exhausted and it feels weird to be back together. No nurses, no machines, no bleeps. Almost scary.
The first thing I did was collecting cat poop in our garden. Welcome home.

He just doesn't like his meds, I guess...

It's part of the rotavirus infection, but it's still nasty: Kalle threw up again this morning. 45 minutes after he took his meds. The nurse gave him his nurtrition pretty early...without any problem. So I guess Kalle just doesn't like his meds. Maybe he read about the side effects...
The doctors say that if you throw up after more than 30 minutes you don't give the meds again because the body should have absorbed the important ingredients. Let's hope they're right.

At least he's in the mood to play a little bit with the 'activity center' he got from auntie Esther and uncle Rogier :-)

And another one....... Rotavirus!

You might think that if you go to the hospital you're supposed to get better.... well...that's not always te case. Kalle has diarrhea and he vomited twice after receiving his medication. Turns out he has the Rotavirus.
Somehow it's almost a relief. We were worried that something might be wrong with his drain. Vomiting and an increase of epileptic activity may be a sign for a drain that is not working properly. But it's 'just' another virus. There is no medication, you just have to be patient. We hope Kalle's stomach will accept his medication in the morning. Especially his antiepileptic drugs are so important. Skipping the meds once isn't great, skipping twice is a real problem.
Hope you'll get better soon, little man!

We want to go home!

Still in the hospital. After a day and a night without oxygen Kalle just needed a little bit this morning. His saturation was not good enough without it. It was not way too low, like always...it was just a bit too low.
Lots of epilepsy, lots of small seizures, not very alert either. It almost seemed like Kalle was somewhere else today. We were so worried that the pediatrician decided to call Kalle's neurologist in the other hospital. He said that the epilepsy may react to the viral infection now and that this reaction often occurs when the biggest part of the infection is already over. That was a small relief.
Drinking is still a problem. He gets his nutrition through the nasal feeding tube. When he tries to drink it's okay for a short time. Then he starts choking and coughing. The chocking is not very bad 'cause he coughs very well, but we are afraid that we don't give him the chance to fully recover if he keeps on choking now. So I guess we'll have to take him home with the feeding tube and then see if we can go back to the bottle. Kalle loves it so much.

We are so ready to go home. Let's hope Kalle feels that way, too, very soon.

EEG

Kalle had an EEG today. He looked so cute with his electrode cap :-) The major insult at the beginning of the EEG was not so cute. At least they registered it, meaning: They now know what we are talking about when we tell them Kalle had one of his 'head from left to right-seizures'. Result on february 11, the day of our next appointment with the neurologist.

More wires....

We're not so sure this EEG will be much better than the last one. Of course, we hope the epilepsy got a little bit better with the ketogenic diet. But EEG's are not the holy grail. Maybe it's even more important what you see on the outside: does he make more contact, is he more relaxed, more alert.... On march 1 we will talk about the 3 months trial period (dec / jan / feb). That day we'll decide if Kalle will stay on the diet or not.

No major changes

Nothing really changed since yesterday. Still tons of phlegm, still a lot of coughing, still a feeding tube and still a nasal cannula for just a bit of oxygen.

Being in a hospital for more than just one or two days makes the time stop. The whole world keeps on turning while you're sitting a small room with a certain smell, old furniture, medical stuff everywhere. You move from the couch to the table, from the hospital bed to the bathroom to the room with the microwave.

 

At the end of the day you wonder what you actually did that day, what happened. You wonder if it really helps to sit in this weird bubble, waiting for cure, or at least improvement. You don't know when you are allowed to go home, not alone, not just for the next attempt to sleep. But together, for a long time, back to a life that is at least a little bit more real.

Oxygen

After a night and a whole day without any oxygen Kalle's saturation was too low last night. Not very, very low. But just too low. So now he has a nasal feeding tube in his left nostril and a nasal cannula in both nostrils. At least his face looks symmetric now, with two patches....

There is still a lot of phlegm in his airways. Even though he coughes every now and then it just seems to stay there. Yesterday I called the laboratory for the results of the viral tests. It turned out he has two virusses: Rhino and Picorna, two common viruses that cause a common cold. But because this is Kalle's first winter, he still needs to develop his immune system. And it's more difficult for him to get rid of the phlegm beacuse he doesn't move as much as other kids. Right now he is two meters away from me and I can hear that weird squeaking sound while he's breathing. So going home together seems to be far away...it will be days, maybe a week?

The people in the hospital are nice. But everything is old, worn out. The hospital will move to a new location in a couple of months. We're on the ground floor, a parking lot in front of our window. So at least ther's a lot of entertainment.

Feeding tube

Today we (and the doctors) decided that it's better to help Kalle by placing a nasal feeding tube. He couldn't drink his bottle anymore without choking and coughing all the time. It was just too much for him.
The viral infection causes a lot of phlegm. Choking does, too. So there is too much phlegm all the time. Because Kalle doesn't move as much as other 1 year olds, the phlegm stays in his respiratory system, instead of slowly moving to the 'exit'. So even though he is able to cough strongly, it's not enough. At least now.
It was a huge step, but we should give it a chance. Let's hope he has a good night and already feels better in the morning.

Hospital...

The last couple of weeks Kalle is coughing a lot, with tons of phlegm in his bronchial tubes. Every time he takes a breath you can hear strange noises. This morning those noises just were too present. Unfortunately we can't just call his pediatrician and ask if she can listen to his lungs (we want to be sure he doesn't have pneumonia). It's a big, academic hospital, meaning: if you want an appointment today, you need to go to the emergency room. So that's where we went.

They took a photo of his lungs. The photo showed signs of a viral infection, just like a couple of weeks ago. But no pneumonia. And it turned out that Kalle is not getting enough oxygen, because of all the phlegm that is blocking his respiratory tract. His saturation (= oxygen level in his blood) is supposed to be between '92-100'. It was around '89-92'. That's not really bad, but it's just not okay. So they decided to keep him for a day or two, to keep a close eye on him, give him an extra med, maybe even an antibiotic (which I don't really understand because it's not a bacterial, but a viral infection...). Unfortunately the hospital where at least some of the doctors know Kalle didn't have a bed available. So now we're in a smaller hospital, further away from our home. His saturation is already slightly better than a couple of hours ago. So maybe, maybe we can go home tomorrow. Cause home is where we should be. Where we want to be.

Me and Kalle in the ambulance...he slept. I thought this was the cool part of the day....

New chair & first swimming experience

Yesterday we finally got Kalle's special chair. After 3,5 months of waiting. It is huge, but fits well. And it's green (we were allowed to choose the colors). So yesterday Kalle was joining us at the table for the first time while we were having dinner :-) Pretty cool.






Another 'first time': We went swimming, with Kalle. At the rehabilitation center they have a warm pool. Well actually...Jan went swimming with him, I watched, took pictures and made a short video. We're not sure he really liked it, but he didn't cry, so maybe he just had to get used to the new envorinment. And of course he looked extremely cute in his swimming diaper....

Birthday at the kindergarden

Kalle celebrated his first birthday at the kindergarden today. Although his birthday actually was on dec 28 it was a real celebration, with gifts, a birthday song and a birthday hat. Not so sure how much Kalle enjoyed it :-) .........

Good hair day

"Why can't you just let me rest on dad's chest,
instead of taking pictures of my curls?!"

Pride

We went to the hospital today for a hearing test. Lots of kids who had meningitis loose their hearing or at least have difficulties to hear. This last of three tests after the meningitis treatment was as good as the first two. Kalle's right ear is good. His left ear is not as good as the right one, but it's still okay. That's pretty amazing, considering the damage in his head.
The waiting room was full of people. Nervous parents, children running, playing, shouting. Then we heard the hearing test-lady call Kalle's name. With Kalle in my arms I walked to the other side of the waiting room, totally filled with love and pride. That feeling just hit me when the lady called Kalle's name. I thought: 'Yes people. This is our amazing son, with the most lovely face, gorgeous curly hair and a pretty cool name. Take a good look.'

It helps....

...to post bad posts. Like the last one. Last nights where actually okay, with only 1-3 short breaks. Yesterday Kalle and I played the kicking-game for quite a while: Kalle is laying on his back, kicking with his feet, trying to hit something....in this case me. He seems to enjoy every 'succesful' kick. At least...that's what we think. We notice some enthousiasm in his face. It's great that he moves his legs like this. Shortly after his meningitis they ran a test to check if there were signals going from his hands and feet to his brain. The results were bad. The test is not 100% reliable, they said. And it shows. Kalle is definitely consciously moving his arms and legs, trying to hit something, reacting. Go Kalle!

Sonja

Bad night, weird day

Kalle had one of these nights....a night you can't even call a night because sleeping was not one the options. We have no idea what's going on (and frankly... it's difficult to think straight when sleep deprivation is mixing up everything). Instead of sleeping last night Kalle slept during the day. So what will next night bring....
We tried to go out for a walk, but Kalle started to cry so terribly that we had to go back home.
Bad night, weird day. Not exacty a day to remember. Hopefully the next days will bring better news.

Mystery

It's difficult to understand what is going in Kalle's body. We try to 'read' him as good as we can, based on everything that happened during the last year. But sometimes we just don't know. Why did he have a good night yesterday? Why didn't he the night before? Why was his epilepsy 'okay' today and terrible a couple of days ago?
The doctor said that small things can have a big influence on the epilepsy, like obstipation or a virus you can't see 'cause it's not causing a fever. There are no big changes in his medication, so we can just guess. It often remains a mystery. We learned to accept that we don't have all the answers, and neither do the doctors. Sometimes it feels like a guessing game.

Kalle in his sheep-sun-clouds-PJ ...hope he'll have a good night.

We can't see what is going on in Kalle's head. And if we could we would probably realize even more that there isn't a cure for every bad thing that is happening to him. And that not every bad sign we see on the outside means automatically that there is something serious going on. So what we try to do is say 'he just has a bad day'. We try to find a normal answer for an irrugelar question. And then we hope that the next day will be better. And that's what happens every now and then. Bad day - good day. Maybe he uses the bad days to grow, apparently that's what happens with healthy kids, too. Growing pain. Just a regular thing.

Sonja