Up and down

After a terrible, terrible day with lots of severe epileptic activity and lots of sleeping Kalle feels better today. We have no idea what caused that huge setback yesterday. Today we still see some epilepsy, but it's nothing compared to yesterday. Kalle was more awake, he noticed us being around, he wanted to drink. So today we feel better, too.
Let's hope 2011 will be a better, healthier, happier year for him.
2010 won't be a year to remember in a good way. So bye bye, 2010.

Have a great, inspiring, happy 2011.

Sonja, Jan & Kalle

Happy birthday...

...to me!!

Today at 11:23 AM I was born exactly a year ago.
Me, mommy and daddy were sooo happy!

Today my dad tweeted:

janvanbijnen 

Celebrates his son's first birthday! Certainly not a year to remember as a good one but definately grateful for another one #kalleelvisabout 7 hours ago via TweetDeck


...that covers it all...

Now off for a drink and birthday-cake!

Merry Christmas & Doing better

Merry Christmas everybody!

Today's doctor's appointment went well. The pediatrician told us that Kalle's lungs sound clean, which was the most important thing. Too much noise (= phlegm) on the lungs could lead to pneumonia. And that would be bad, very bad. So that was good news. Kalle is feeling better, he drinks more, he is more alert. 

So.... we don't have to spend the holidays in the hospital :-)

Celebrating Christmas feels weird, though. A year ago I imagined us unpacking presents, a healthy happy family, a smiling child. But everything is different. Life is unpredictable.

Bye, Sonja

...and another visit to the hospital...

We almost start to feel at home in the emergency room. Yesterday we went to the hospital for the second time this week.
Kalle was extremely tired and only drank 1 - 2 bottles (instead of 5). We started to get worried about dehydration. Fortunately that wasn't the case. The doctors examined him again and noticed he still has an infection of both middle ears. Still, or again? So most likely that's the reason why he doesn't want to drink. I guess it just doesn't feel good to drink while your ears feel weird or even hurt. Probably the viruses they found 10 days ago are still partying in Kalle's body, which might explain why he's so tired. So maybe, maybe this is just a regular baby-thing, no neurological setback, like a sudden swallowing problem.
We'll talk to the doctor on the phone this afternoon to discuss further steps.

Bye, Sonja

Another visit to the hospital

It's becoming a habit to go to the emergency room on thursdays...so guess where we've been today. Kalle's breathing still sounds terrible, he drinks less than he should and he's coughing and choking during drinking just isn't okay. The good news: His blood (sugar, ketones) is still okay, he pees and he didn't loose weight so far.

In contrast to what the doctor told us last week, they did find two viruses in Kalle's nose. Both of them might cause the awful amount of phlegm. That phlegm makes him cough and maybe also makes him choke while he's trying to drink. But this is theory. There is no way to really find out. 

We need to watch Kalle's temperature very closely. As soon as he develops a fever we need to go back to the emergency room. A fever might be the first sign of pneumonia. 

The doctors also made an x-ray of his lungs. They are not 100% clean and looked like there's viral infection. But in theory it could also be 'micro aspiration', meaning: every time Kalle drinks he probably breathes in small amounts of fluid. If that would be the case the fluid might cause the phlegm, which might cause the coughing etc....

If all this trouble is caused by the virus(es) we should see improvement within the next week.

We'll get a nebulizer (see picture) we have to use 2 - 4 times / day. Not with real meds in it, just with saline. We hope it will help Kalle get rid of the phlegm.

We have to be back to the hospital on the 24th (that reminds me of something...oh wait...it's Christmas....). If the doctors see improvement we'll spend Christmas at home. If they don't we won't have to think about where to go and what to do during the holidays...

Take care, Sonja

Day 22 of the ketogenic diet

Kalle is doing slightly better than yesterday. I mixed some agar agar in his bottles which made drinking easier. Much less choking and coughing. And it's okay on the diet.
By the way...we start to notice less myoclonic jerks. Let's hope it's not a coincidence. It would be amazing if this would be the first result of the diet....

Some good news would be nice

If you think it's already bad enough it's getting worse. During the last week we noticed that Kalle has developed problems drinking his bottles. It's not that he doesn't want to drink, but swallowing seems to be more and more difficult for him. He chokes during feeding, starts to cough. During the last couple of days he started to sound like an 80-year old that has smoked too many cigars all his life.
The big question is: why? Drinking has never been a problem, even during the first months with excessive crying. In fact, that's the only thing that has never ever been a problem at all....which is remarkable, regarding his heavy neurological problems. Most kids with this kind of brain damage can't drink on their own and need a feeding tube. The bottle has always been Kalle's best friend (no, it's not what you think... of course it's always been baby formula).
What might influence the problem:

- Since Kalle is on the ketogenic diet he's not allowed to have regular thickener in his formula (too many carbohydrates). He was not used to drink fluids that 'thin'. (By the way, I ordered a thickener that is ketoproof, but it's still on it's way from the UK, 'due to heavy snow fall'...). But: The first days in the hospital Kalle drank the bottles without the thickener and did surprisingly well. On the other hand: We have to add several meds to the first bottle in the morning, including calcium powder, causing the fluid to thicken a bit. He has way less problems drinking this bottle than the other ones.

- Kalle had a cold before he developed an infection of the middle ear. Cold means lots of phlegm, dancing up and down your air ways, making you want to cough all the time. Needing to cough and trying to drink is not exactly a good combination. two days ago we went to the emergency room because we were so worried. The sounds Kalle makes while he's breathing are terrible. He chocked so many times that it felt like 10 bottles of formula had entered his lungs, probably causing a serious pneumonia within hours. Instead the doctors thought he has a certain virus, causing the amount of phlegm. But the tests came back negative. Which doesn't mean there is no virus...some of them are not detectable.

It would be quite a coincidence that Kalle's brain stops giving the right drinking instructions now. Months ago his 'speech therapist' (who is also specialized in solving drinking problems) said that Kalle already learned to drink consciously (the drinking reflex usually disappears after 6 months).
Right now we take the bottle out off his mouth every couple of seconds, just to be sure he doesn't choke and to control somehow how much he swallows. If this doesn't works and he keeps choking we have to go to the hospital tomorrow. Kalle will the get a nasal feeding tube, to make sure he's getting enough 'food' & fluid.
So far he pees enough, he doesn't have a fever and his blood is okay (ketones and blood sugar). But we don't want to wait until this changes and / or until he gets pneumonia. Today we just hope it will get better. A nasal feeding tube is not exactly a nice piece of jewelry. But if it gives Kalle the opportunity to recover until that stupid thickener arrives....

To be continued....

Taking a walk in our neighborhood...getting some fresh air!

Day 16 of the ketogenic diet

Great. Just came back from the doctor. Kalle has an infection of both his middle ears. The good news: his lungs are clean. We were afraid he would have pneumonia.
Infections of the middle ear are caused by viruses most of the times, but sometimes it's caused by a bacteria. That's why Kalle needs to take an antibiotic. We are not very pleased...the last time Kalle's digestion went crazy (because antibiotics kill the bacteria in the bowel system, the bad and the good ones). But IF it's a bacteria it might go from bad to worse. Those infections can even cause hearing damage.
At least we now understand why Kalle had two bad nights, acted more restless and showed quite some epileptic activity: After a couple of days of coughing and sneezing he developed an infection of the middle ear. What a bummer.
Diet wise there haven't been any changes. Kalle accepts the Keto Cal, even seems to like it (?!). Because of his cold (now infection) we can't really say if it already changed his seizures or the number of seizures. Being sick spoils everything. His ketones and his blood sugar are good so far, but we have to be careful. Drinking less (which is pretty common when don't feel okay) might influence his ketosis and his blood sugar.

Take care, bye, Sonja

Kalle talking to his friend, the green bird

Superstitious note to ourselves:

never, ever tell people 'the nights are way better these days'!
We did that a couple of times already and <believe it or not> everytime we ended up with a Kalle that kept us awake for the most part of the night.

Last night we were there again. Just like two weeks ago, something went wrong with his sleeping-medicine.
As expected the time he spent today at De Kleine Kapitein, the medical kindergarden he attends almost every friday, was not all that relaxed. His body showed a lot of epilepsy.

Apart from that: Kalle is doing quite good on the ketogenic diet.
He drinks his bottles without much protest, though he chokes a lot. That's not a good thing but we do everything we can to help him keep on drinking. Please, no feeding tube for Kalle!

Did we already mention that Kalle shows signs that he takes more notion of what's going on around him? Seems like he's more and more able to look at us, to try to play with his toys. You may zoomed in to our brave lil' boy to notice but still: things are happening in some sort of way. And that's exciting to see.

We were told that it may take up to 3 months to see results.
So help us keep our fingers crossed.

We're not looking forward to the end of the year. The end of december and of course the start of the new year is a time full of bad memories for us. Frankly: all days where the weather is cold, a little snowy remind us of the days that we started to realize that Kalle is not our original Kalle anymore.

More updates coming soon.

Jan

HOME

Good to be home. We needed some time to adjust, after the week in the hospital. Just the three of us.

Kalle is doing 'okay', even though the frequency of his seizures changes a lot. There are hours with very few seizures and hours with lots of seizures. I try to tell myself this doesn't say anything about if the diet will work or not. But it's not easy to be hopeful. After all those months of bad news it's difficult to expect good news. And there are stories about kids with even more seizures Kalle has who became almost seizure free after days. We have to be patient.
Two days ago Kalle smiled for a couple of seconds. Amazing! And that smile didn't have anything to do with a seizure (he has seizures where he turns his head, rolls his eyes and then smiles).

His ketosis his just above 4 (for those who understand what it means :-) ), he drinks his bottles, even though it sometimes takes an hour to finish. And he sleeps at night! Most nights are actually okay the last 2 months or so (thanks, Nitrazepam).

Got an appointment with the dietitian tomorrow...she'll call for an evaluation of the last week.

Bye, Sonja

GOING HOME!

After one week in the hospital we are going home tonight, with Kalle of course :-) His blood sugar and his ketones are good, so there's no reason to think this is going to change now. Of course, if Kalle would get a fever or something...that might influence everything. But now it's just as safe to go home as it is to stay in the hospital.

To be continued.....

Day 7 of the ketogenic diet

Had an unspectacular sunday. Kalle had a good night. Drinking was better than yesterday, although he still was pretty tired. Blood sugar and ketones were good (ketones: 4,0!). We took a short walk in the hospital 'garden'. It doesn't deserve to be called 'garden', but at least we can walk outside and get some fresh air. It's pretty weird that all those kids are in a hospital with windows you can't open. Air conditionings aren't exactly healthy. Even though they have special filters. It should be mandatory to get fresh air every day, for at least 10 minutes. If you're not too sick, of course.
Tomorrow: maybe some other results of the blood work, talking to the doctors and the dietitian. Hopefully we don't have to stay another week...

Take care, Sonja

Day 6 of the ketogenic diet

Kalle was pretty tired today. Slept a lot, didn't enjoy drinking his bottles. I guess it's because his metabolism now works differently. The body has to adjust to the new source of energy. The ketone level in his blood was 3,4! That's good. It has to be between 3 and 4...so it's the first day he is actually 'in ketosis'. He looked more relaxed, too. Less seizures than yesterday. But it's way too early to think it's because of the diet.
It's weekend, so it's quiet in the hospital. No doctors running around, just the basic stuff.

We were told that one of the employees (we don't know who) has an MRSA infection. So every patient needs to be tested. Not exactly what we are waiting for..... if anybody else turns out to be positive, they need to shut down this part of the hospital. Meaning: Isolation, sending the patients home or to other hospitals (if they are tested negative, of course). One of the nurses assured us that the infected person has not been Kalle's nurse. So the chance that he's infected is small. But still...

Good night, Sonja

Go ketones!

We're checking Kalle's 'ketones' every evening now. The body starts producing ketones as soon as there are only very few carbohydrates to burn and fat becomes the only source of energy. The ketones are a sign that you're 'in ketosis'. The ketone level has to be between 3 and 4. Tonight it has been 2,8! That's pretty cool 'cause it means that Kalle is moving into the good direction! Yesterday it was only 0,8...so he took a big jump.
We need to control Kalle's blood sugar twice a day. Very important. It's lower when you're on the diet. But if it's too low it can be dangerous. The body needs some sugar to function. Next check: in the morning.

Good night, Sonja

Day 5 of the ketogenic diet

What a day. What a night. Yesterday started okay. But it went from bad to worse. Kalle showed lots of epileptic activity, didn't want to sleep during the day.

The evening and the night were even worse. Jan stayed with Kalle while I went home. Kalle cried and wailed. His sleeping meds didn't help to fall asleep. At 1am I drove back to the hospital 'cause I couldn't sleep anyway. My baby is crying and feeling miserable 20 minutes away...how am I supposed to sleep at home?? When I got to the hospital Kalle just fell asleep. I stayed, Jan went home. I woke up at 3 and noticed lots of epileptic movements. It scared the hell out of me...Kalle never showed any epilepsy while he's asleep. At 6 he wanted his bottle. He slept another hour, then woke up again. This night was too short! 

I guess it's all because of the new nutrition that completely turns around his metabolism. His body is burning fat instead of carbohydrates more and more. He's slowly getting 'into ketosis'. The doctors warned us: Kalle might feel uncomfortable, nauseous, weird for a couple of days. He might get more seizures. All because of the 'metabolism-switch'. Let's hope it'll be over soon....

We're proud Kalle actually drinks his new nutrition...it's 90% fat! That's kind of like drinking butter. 

This morning Kalle had an EEG. He doesn't like the electrodes glued to his head with a smushy paste (makes his hair even curlier). But he did a good job, barely cried, drank is bottle. He showed a couple of little seizures, which is good. At least they can now analyze what they see on the EEG in connection to what Kalle is doing.

To get rid of the smushy paste and the red pen stripes on his head (which mark the spots where the electrodes are glued) we're going to take a shower together :-) Can't believe this hospital doesn't have a bath tub or even a small warm swimming pool. 

To be continued.... Sonja

glue & red pen stripes after the EEG

Jan still has time to impress the nurses by playing 'Sinterklaas'-songs....

Day 4 of the ketogenic diet

Had a good, long night! Kalle's epilepsy is much better today, compared to yesterday. I found out why the night before was so bad: We mix Kalle's meds - including sleeping meds - with a bit of nutrition. The sleeping meds usually come in a small capsule that we empty into the bottle. But in the hospital we get the med in a syringe, dissolved in some water. Yesterday I noticed that the med (a white powder) hasn't been dissolved at all....the biggest part of the powder just stayed in the syringe and didn't go into the bottle. So I guess Kalle didn't have any sleeping medication at all....which explains why he didn't sleep....which explains why he had so much more epileptic activity. *sigh* Pretty stupid that such a simple, practical thing causes so much trouble.

Program for today: ECG and a visit to the Snoezelkamer:

In the afternoon Jan and I are going to the hospital where Kalle is born. And where everything started. We're going to talk to one of the gynecologists to get some answers. It's a long story some of you know. If you don't: I might explain everything another time. It comes down to the question: If we had known certain things at the right time, would Kalle be sick now? This appointment might be the beginning of  a long complaint procedure.

To be continued....

Day 3 of the ketogenic diet

Had a bad night. Maybe two or three hours of sleep, Kalle completely awake at 3am.
While he is on the diet he has to drink a certain amount of ketogenic nutrition / day in order to make the diet work. Before he drinks the last bottle of the day (around 11pm) usually he first gets his sleeping meds. At home he falls asleep pretty soon and doesn't drink a whole bottle of nutrition. So yesterday we had to give the bottle first, then his sleeping meds. Maybe they didn't work properly because his stomach was full...he just didn't fall asleep. Took him 1 1/2 hours. And then he woke up at 3. I couldn't give him another bottle because he wasn't allowed to drink until after the big blood work in the morning. Let's say I felt pretty tired today....
Blood work went okay, although the anesthetist (best guys for finding small veins) didn't come at 8, but 1 1/2 hours later... Kalle cried terribly, but he stopped immediately when it was done. Good job! Brave Kalle :-)
Lots and lots of epileptic activity. It went on and on. He was on his back, his arms waving and shaking, turning his head, rolling his eyes. The neurologist came to talk to us and was pretty worried. He even wanted to give him Stesolid, an emergency med that you have to use if the epileptic activity won't stop. Pro: seizures stop for a while. Con: kid will sleep for the next hours, unable to drink, knocked out. And it's a heavy med, too. Just before the nurse came into our room with the med I picked Kalle up...and he stopped. Mama-mojo...
I guess the epilepsy got worse because of the sleep deprivation and the new nutrition. After a good, deep sleep in the afternoon there was less epileptic activity.
Got a little testing kit for blood sugar and ketones today. We'll have to practice how to use it. It's important to check the blood sugar 'cause it's going to be lower on the diet. But it's dangerous if it's too low. And we have to check Kalle's ketones 'cause that's the way to se if he's already 'on the diet'...it shows if his metabolism has turned around (from burning carbohydrates to burning fat > which means that the body produces ketones).
Tomorrow they'll check his heart (ECG, standard procedure if you start the diet). And tomorrow will be the first day with 100% ketocal nutrition. Kalle drinks every bottle so far....that's good. No taste-trouble.
When will we know if the diet 'works'? Meaning: ...if there are less seizures and / or Kalle is more alert and happy. Sometimes you can see improvement during a couple of days. Sometimes you have to be patient for months. Every child is different. And sometimes you don't see any change at all.
We decided it's time for something good...so the diet has to work...

Take care, Sonja

Day 2 of the ketogenic diet

The doctors ran a test today that showed that Kalle needs only very few calories. He doesn't move that much, so he doesn't burn that much calories. It's very important to know how much calories he needs so the dietitian can figure out the exact amount of nutrition Kalle will get on the diet. Too much nutrition would mean that the diet might not work.
He drank his bottles quite well (mix of 1/2 of his 'old' nutrition, 1/2 of the new ketogenic nutrition). During the next couple of days he might feel hungry, maybe nauseous. Keep your fingers crossed that he won't feel that uncomfortable.
Tomorrow: big blood work (not today). It will be pretty difficult to find a vein. We remember the first time he had to stay in this hospital. One day Kalle needed a new infusion. They tried ten (10!) times for like 2 hours. Didn't work. So fingers crossed for that one, too....
It's a strange thing to sit in a hospital room all day. Like you're in another world. Everything outside just keeps on going. Let's hope we don't have to stay here for weeks..

Sonja

PS: picture of Kalle during the 'calories-test'

Day 1 of the ketogenic diet

Day 1 is almost over. We talked to the doctors, the nurses and the dietitian. The doctor checked Kalle's heart & lungs, tested his reflexes etc... looked okay. No major disasters.
Tomorrow: blood work and a test that must show how much calories Kalle needs.
Started with the new ketogenic nutrition today, one quarter of every bottle. Tomorrow half a bottle etc. On wednesday and thursday Kalle might feel nauseous and very tired because his body is getting into ketosis.
Being in the hospital makes us feel tired. You can't open a window. The air conditioning makes your throat dry. But we shouldn't complain. If this treatment will help Kalle feel better...

Good night, Sonja

START KETOGENIC DIET!

We received THE phone call this morning. Monday Kalle will finally go to the hospital for the start of the ketogenic diet (read previous posts). What a relief. Let's hope it will help reduce the seizures, make him more alert and happy. He will be on the diet for at least 3 months, probably much longer, if it really helps. The first one or two weeks he'll has to be in the hospital because they have to check his blood and urine daily. We'll both be with him during daytime. One of us will stay with him at night. The Sophia Children's Hospital has free internet, so we'll write regular updates.

Sonja

Nice article

Just read a nice article about the ketogenic diet you might like: Epilepsy's Big Fat Miracle

Waiting

We are waiting for THE phone call. Kalle is no. 1 on the hospital's waiting list for the ketogenic diet. We expect the call any day now. Kalle then has to go to the hospital for one or two weeks, if nothing unexpected happens. Fingers crossed we get the call soon, the diet will help and nothing unexpected will happen (unless it's something great, of course...).

In the meantime we are not looking forward to the next months. For many reasons. Will the diet help control the seizures? And with december getting closer we get flashbacks all the time... One year ago I carried a perfectly healthy baby in my belly. At the beginning of december we have been to Paris. The week before Christmas I got very sick. I didn't know I had salmonella poisoning, the bacteria that would make Kalle sick two weeks later. Etc...etc... We would love to go back to last year, with the knowledge we have now. Maybe things would be different now.

The good news: Kalle played a bit today...check out this video...look at him, concentrating, trying to hit the mobile hanging above his head :-) He did a great job!

Sonja

Note to myself

Just watched a video of Kalle, from 3 months ago. I tickled him, he laughed. I just realized that he didn't laugh for maybe two months now. This is one thing that disappeared because of this terrible epilepsy (West Syndrome) and / or the medication he gets to control it (which doesn't work so far). Please send every bit of positive energy and hopeful thoughts you have...Kalle will need it when he'll be on the ketogenic diet (hopefully next week). It would be such a great gift if at least he could laugh again.
Note to myself: don't watch the video again.

Sonja

Ketogenic diet

We finally got an email from the hospital. Kalle is no.1 on the waiting list for the ketogenic diet. Ketogenic what?...you might ask. Well...it's a treatment for epilepsy, but there are no meds involved. Usually the body burns carbohydrates (sugars). We eat bread, pasta, fruit, veggies etc... That's where the body gets its energy from. If you're on the ketogenic diet you eat very few carbohydrates and lots of fat. Your body will burn the fat instead of the carbohydrates. Because of that the body will produce 'ketones'. The patient will be 'in ketosis'. That ketosis somehow helps the epilepsy.
Of course, it doesn't help every patient, but most of the times it helps at least reducing the seizures. And the patient will be more alert. By the way....more fat doesn't mean more calories. First they (= doctors) will run some tests, for example how many calories Kalle needs. He is much too heavy (he gained 1 kg / month since he's on Depakine, another anti-convulsive drug...he's now 11,5 kg, 66cm). So the start of the diet will also mean that he will loose some weight. We hope that his ability to use his arms and legs, lift his head etc. will improve by that.

We refused to let the doctors treat Kalle with another heavy med, like ACTH. There are medical studies that prove the effectiveness of the ketogenic diet and / or compare the different types of treatment. ACTH would have meant two injections / day for weeks or months.

No. 1 on the waiting list means waiting another 2-3 weeks. Kalle has to be in the hospital for a 5-7 days because his blood sugar and lots of other things have to be checked carefully. If he his 'in ketosis' we can take him home and continue the diet. In Kalle's case it will mean using other nutrition that goes in the same bottle he has now :-)

To be continued....

Email-updates january - september 2010

During the last 10 months we sent a couple of email updates to friends, family and other people who care about Kalle. It's hard to read them. Especially the first ones. We were in the middle of something. We knew it was bad, but HOW bad... So much has changed that sometimes it's like we're different people, living an other life. Even though we slowly start to accept what happened and how our future might (not) look like, it will take a lot of time to define who and what we are now.

The e-mail updates from january - september 2010 are listed below (start reading from the bottom of the page):

(this last one had been written in Dutch only...this is the translation:)

Dear friends

It's a long time ago that we wrote our last update about Kalle. Mostly because it's so hard and we don't have much time for a social life.

After the last time at the hospital (may/june) not much had changed. Except for the fact that Kalle's epilepsy got much worse. It also showed on the outside, not only on the EEG. He got more medication, with lots of side effects (like phlegm). During the 6 week stay at the Sophia Kinderziekenhuis we tried to convince the doctors that something is not okay with Kalle's digestion. It often looked like he had belly pain. He would stretch out, completely stiff. he had a lot (a lot!) of gas etc. But he stayed at 'neurology', so digestion is not the first thing they want to deal with. The doctors even made us feel like we were in denial, like we didn't want to see Kalle's brain damage. 

We were sitting in that hospital room, with windows that can't open, where we saw different doctors and nurses almost every day. We tried to convince them that they might at least talk to a gastroenterologist (stomach/bowel/liver doc). They did, but the guy never took a look at Kalle or even talked to us. Those things make us feel so helpless.

Mid june Kalle was sent home. His discomfort and his restlessness were not improved. The signs of epilepsy got more and more clear: involuntary muscle contractions (mostly his arms, almost like he's waving at you), his head slowly turning from one side to the other, with his eyes looking upwards...

We received a 'PGB' (dutch: persoonsgebonden budget), money that we can spend to 'buy' nurses that take care of Kalle at home. Since then there are two different nurses in our house for a couple of hours a week, so we can relax (...) a bit or do some work. 

Weeks later Kalle's pediatrician finally agreed to send him to a gastroenterologist. We ended up in Antwerp because in Rotterdam we would have waited another month for an appointment. The doctor in Antwerp was kind, she knew what she was talking about, she talked with us for an hour...what a relief. She suggested to stop giving Kalle carob powder which we added to his bottles to make the fluid thicker (makes swallowing easier). What a simple suggestion. We had no idea that some kids' bowel systems don't like that stuff. After a week or so Kalle improved. He cried less, his muscle tension was better. Coincidence?

In august Kalle had another EEG. It had been 2,5 months since the last one which is a long time for a baby with epilepsy (we know that now...). He had a new doctor in The Hague where we went for a second opinion. The EEG had been made two days before we went to Berlin, the first time with Kalle. We had mixed emotions about the trip because we really wanted and needed to go. But on the other had we were afraid. Hours in the car. A crying Kalle. What if he would have a major seizure on the highway... No, he didn't have one of those so far, but what if.... 

The 2 x 4 hour drive was okay, without any major incidents.

A couple of days later we got the result of the EEG. It couldn't have been worse. West Syndrome, a very serious epilepsy syndrome which is difficult to treat, especially if the cause is brain damage (some kids get the syndrome 'out of the blue'..treatment is easier for them, most of the times). The problem with this syndrome: If you can't treat it right, the child's development will stop. Often the child 'forgets' things he did before, like smiling. The epileptic activity in the brain is so bad that it just blocks a lot of things. Considering that Kalle is already developing very, very slowly because of his brain damage..... we had to get a new medication immediately. But this medication (Sabril) can cause very serious side effects, like vision damage. That's the kind of choice we have to make.....

In the beginning Sabril helped him to feel more comfortable. The epilepsy was less visible. But after a couple of days he got used to it. So we had to give him more. 

Now Kalle is more restless, again. He doesn't sleep well (= not enough) which is very bad for our mood, too. During the day he's sleepy (but not sleepING). 

Very slowly we start to understand that our life will never be the same. That we will have to care for a child. Forever. A child that will be unhappy a lot because his body or the (side effects of the) meds won't let him be happy. Kalle will be in the hospital every now and then because sometimes the meds just don't work. We start to realize that the freedom we created disappeared. That we are 'different parents' because we have a 'special child'. Of course, some things don't matter that much anymore. Sometimes it amazes my what people worry about. What I worried about.

But now, at this point of the journey, we just can't see anything positive in the whole story. Our 'special child' just isn't happy! Our sadness is too big. We think about the thing that will never happen....Kalle won't have his own family. He won't drive a car. It's unlikely that he will ride a bike. Will he walk? Sit? Crawl? Talk? Love? Feel? we don't know. And that hurts. We are so happy for all our friends with great, amazing, healthy children. But sometimes it's just too much for us.

There are lots of people participating in our daily life since Kalle got sick: Nurses who come to take care of him, physiotherapists, speech therapists (who checks if Kalle drinks / swallows okay). Those people are doing great jobs, but they come to OUR house. They walk in OUR living room. We appreciate their help. But sometimes we miss being a family, just the 3 of us. 

That doesn't mean we don't want to see anybody! We appreciate all your text messages, letters, emails, phone calls.... Please stay in touch. We might not always pick up the phone or we might say 'no' sometimes if you ask to have lunch together. But it helps to know that people care. 

Cause we don't like life very much right now. Kalle doesn't and we don't either.

----------------

Dear friends,

it's getting harder all the time, bringing bad news to you concerning our precious son Kalle.

He's not as healthy as we thought.

Kalle is in Sophia Children's Hospital again from the 4th of May. We're not sure yet when he'll be home again.

The crying and overtension in his muscles (hypertonia), in fact all Kalle's reactions on his surroundings were unhandlebar at home.

The doctors already suggested re-hospitalisation to have his behaviour observed and to give us a little bit of air. After the EEC looked bad, it was inevitable to get him in hospital again the very next day.

A lot of epileptic activity was seen and a clear view of missing brainfunction.

The first thing can be treated by medication only. The second makes one fear for the future, including the near future. Usually babies grow out of their first set of reflexes somewhere between 4 and 7 months. After that moment the baby has to 'have learned' to swallow and to drink and so on. The doctors don't exprect Kalle not to do so.

That would condemn us to a life with probe feeding and the prediction of what more he will not learn in his life.

Good news is that Kalle eats part of his fruit- or vegetable bite succesfully since a few days.

And great is the fact that he finally laughed out loud for the first time. It was a reaction on a little teasing-game Sonja plays with him from time to time. Action/reaction, that's what we want to see!

Luckily we are able to see more development in Kalle's behaviour. Having contact or seeing him 'do' something with his environment are big terms, but we do see little steps leading there; enough to give us sparkles of hope.

Other professionals working with Kalle, like his fysio therapist, think the doctors are concluding way too early.

Still, we -have to- reconsider our expectations considering Kalle, his and our future.

Last weekend -on leave- we thought it would be nice to go to a small and quiet party of friends of ours. You know, doing everyday-things.

Sadly, it turned out a disaster; Kalle had a cry-attack we couldn't get him out only but a few hours later. We soo wanted that to be a nice thing....

His crying-and-hypertone-hysteria seems like something that has everything to do with the brain damage being done by the meningitis, being untreatable.

He rarely sleeps very deep, instead getting disturbed too soon.

We need a lot of energy to keep the doctors alert to keep their view not too tight. Apart from all the medical issues we wish Kalle to be way more comfortable.

We turned to be quite naive thinking that after the IC-time everything would be easier. We thought that it would be more diffecult for us seeing the things could not cope with instead of where we are now: Kalle being in pain and dyscomfort on a daily basis.

That makes us really sad. It's so unfair that he fought so hard for a life like this that's so tough.

Nights are still not how they should be, they are tweeking his medicines now, for the epilepsy too.

For now, heappears to be more weak and a little druggy.

Not a lot of good news. Every other day Sonja and I are sleeping in the hospital with Kalle so we do get a tiny little more sleep now.

Luckily Kalle gives us little smiles every now and then, take a look at

http://s268.photobucket.com/albums/jj26/SonjaMarkowski/Kalle%20Elvis%20Markowski/

Love, Jan, Sonja and Kalle

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Dear friends,

here's finally a new update. It took me long not knowing how to put in words how things are now.

There are two sideson this situation: I find it diffecult to tell everyone all bad stuff, how pity we are, now that we finally have our cute en brave son Kalle back home.

Given the circumstances Kalle is doing well.

He's growing well (getting bigger in every way), now and then already trying to grab things, starts to look at his surroundings and people, last week we even got to enjoy his first smiles!

It could go better with Sonja and me; the long hauling between the Children's Hospital and home and all the uncertainty wrecked us.

Usually the first period after a child is being born is like living on a pink cloud, mom being fueled by hormones, dad by euphoria; we with our own state of being had to get adjusted to a new life back home, without the nurses and doctors. Without a director and without monitoring.

It looks like we're doing quite a good job.

Although it did look like a degenerate family  by times: the neighbour's cat's shit not being removed from our garden for months, Sonja who caused an accident on a highway-exit 'cause she fell asleep for a split-second on her way to her first job after Kalle's birth, Kalle who gained almost 400 grams in a week's time caused by weak feeding-management, forgotten payments.... things like that.

But we are getting used to eachother and are able to enjoy beautiful, little moments. Kalle feels at ease home more and more although he is still unable to cope with too much input.

We are a lot to be found in the Children's hospital for Kalle being monitored and research.

On top of that he does a great job working with a fysio therapist and is being treated by an osteopath and a logopedist.

Almost all the things we didn't want to happen with Kalle's disease appeared, the last big step was that Kalle got a VP-Drain inplanted.

It's a small valve just under the skin behind his right ear that regulates the brain liquor. It works really well.

A 3rd scan showed us that the abces in his brain is neutralized; we are now 99% sure that the germs are now out of his body at last.

It would be great for Kalle to be free from all the pain and discomfort so he can show himself as he is: a cute, sweet little man.

It's still not very easy for Kalle to cope with a lot of noise so we're not always open for the public. Email/text/call us to maybe make an appointment.

Please do not call our 010-nr. it makes Kale jump up.

We wish for a beautiful summer that we can enjoy with eachother, friends and family.

Love, Jan, Sonja and Kalle

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Dear friends,

today an update that doesn't require a lot of words...

A lot has happened since my last update and I love to share that with you.

BUT NOT NOW: now I am sooo going to enjoy that our Kalle Elvis is back home with us!!!!

This photo shows him sleeping on our couch.

Love, Jan, Sonja and Kalle

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Dear friends,

still it's great to receive all these signs of support in this time of uncertainty and sorrow.

It seems that the lighting in Kalle's head is getting down. He is still being very sick and there is danger in sight but perspectives are getting a bit better.

Still there's nothing to say what the next weeks will look like for us. 

Lately Kalle underwent 2 MRI-scans, last time I wrote you was after the first one.

The second one last week plus a series of tests showed that the braindamage is worse than expected earlier, especially since it's partially on both sides of the brains.

The characteristics this will lead to later on can be both physical and mental.

Our biggest concern now is Kalles current condition. He holds an abces in his head that doesn't seem to solve on it's own, the fluid-regulation is disturbed too.

Does he need a drain? What if something goes wrong as in getting infected? Can Kalle handle all the tests?

Although we had a heavy but clarifying talk with the prof/doctor who declared us that the next phase would one of slow recuperation; the situation (and thus the treatment policy) has been changed twice since then. 1 step up, 2 steps down, Sonja and I just can't get used to it.

But!!! Looking at Kalle through time shows that he's a lot better these days: he drinks a growing part of his food by himself, looks around clear-eyed regularly, he's with us on our lap, we bath him now and then. You know: playing mom&dad :-)

Kalle is a very strong little man, wise enough to sleep a lot to get better, to be scared easily (sounds, sudden moves), has the most pretty buttocks we ever saw, loves floating and to have bathies, doesn't need any breath-support anymore and love to sleep at his mom's or dad's chest.

We miss him a whole lot being at home at night, we want him to sleep between the two of us so much!

Next time we'll go for even more positive news!!

Love, Jan, Sonja and Kalle

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Dear friends,

thanks again for all your love and support!

It's sad to tell you that Kalle is still not getting better.

Now that we're on day 11 in hospital/treatment, the lighting in Kalle's brain is still not under control.

In a 'standard' meningitis you'll be back home in 2 weeks time. Our son is still very sick.

The medical staff too - though both very experienced and passionate- is sometimes confused by the way Kalle's disease moves in different directions.

The meningitis has a lot bigger impact on babies than on adults because babies lack a lot of capacitance.

The main source of unsureness is still the infection being caused by a salonella bacterium.

Today a punction is being done to ease the pressure of the brainliquid in Kalle's head. By this the doctors hope to help mother nature in the self-regulation so the diseased areas can be reached by the anti-biotics.

Tommorrow they'll monitor it with a brain-echo. This week a change of things has to appear!

We are so very proud of how our son Kalle fights his way though all this. We hope to keep up with this strength.

So you wanna do something for us?

It's important for us to stay in touch with normal life in doing our own groceries, but thanks for the offer :-)

What you can do is: love and cherish eachother. Hug eachother one time extra each day and then think of our Kalle. It's such a sweet and brave little man, he deserves it.

Love, Jan, Sonja and Kalle

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Dear friends,

thanks for all your love and support.

We really appreciate it, we just feel sad Kalle and us needing all this in the first place.

In the night of January 2nd, Kalle is on the Sophia Children's Hospital E.R.

A complete medical team is available there 24/7.

Kalle is diagnosed a salmonella-bacterium infection leading to meningitis.

A very rare kind of meningitis that seems quite agressive.

These days are tough and emotional. We're lucky enough to be allowed near Kalle's bed 24 hours a day.

We live by the hour and it is hard to rate the progression of the disease and the upcoming recovery. Is news good or bad?:

+ Kalle is under the supervision of the best possible doctors and nurses. Sophia is a very well-respected children's hospital. The people there are very alert.

- the kind of infection is very rare, which means that the way the salmonella behaves in Kalle's body is quite unpredictable. Even for such specialized people a case like this appears only once in 5 years so there's not a lot of literature about it

+ that means the staff is very alert and anxious to be there when progression is being made. Sometimes we feel we're part of a Dr. House-episode :-)

- though some data show lower (better) results, the whole process is very slow. In the meantime still braintissue and/or lord membrane can be attacked.

+ we now know -after the first 2, 2 1/2 days- that Kalle will survive!!

- after a brainscan yesterday, Kalle got a huge throwback, he even showed convulsions just like the first days.

+ today was a lot better, he showed more movement and facial expression

- this brainscan showed us that we should be aware that certain zones in Kalle's brains are already damaged.

What that brings in the future, we don't know. The doctor was postive about it, but very mild.

+ today we are happy (under circumstances): Kalle was very relaxed today and reacted very good to the only bodycontact we can have with our son: touch him very gently with our flat hands (he can't handle too much stimulus): we never thought small things like this could make us so happy!

For now: it's gonna take a few weeks antibiotics-treatment at least.

And we live between hope and fear and with belief and love. Kalle, Sonja and me are in a 2 steps up, 1 step down-situation and that's hard to cope with.

I hope I can bring you all good/better news soon!

Love, Jan, Sonja and Kalle

Kalle is born