vrijdag 31 december 2010

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

dinsdag 28 december 2010

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:

Celebrates his son's first birthday! Certainly not a year to remember as a good one but definately grateful for another one #kalleelvis

...that covers it all...

Now off for a drink and birthday-cake!

vrijdag 24 december 2010

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

maandag 20 december 2010

...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

donderdag 16 december 2010

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

maandag 13 december 2010

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....

zaterdag 11 december 2010

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!

dinsdag 7 december 2010

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

vrijdag 3 december 2010

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.


donderdag 2 december 2010


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