LUUKAS WILL SOON TURN 6! :)

He has two little sisters and goes to a kindergarten where has good care and therapies. His epilepsy is his main problem, as no medication has really helped. For a few months Luukas has been on the so called ketogenic diet, which means lots and lots of fat and very little carbohydrates. Due to his epilepsy Luukas has stopped progressing, or even has gone backwards in some areas, and is still at the level of a baby. As for Luukas' "original" disease and the lack of treatment, we have tried legal way to explain things, but unfortunately have found out that doctors might reject what happened and was told to us years ago... or just lie... shame for them, really.

Winter 2007/2008 and spring 2008

Luukas will turn two tomorrow (30 May), so it's time to update his blog :)

We have been fighting against epilepsy, but without real success. Although it seemed in winter that things were getting better, in the end the change in medication that had been taking place from November to April did not lead to improvement. Actually Luukas' seizures happen now more often (up to 10 times per day). We are now changing the medications again. This time it is possible that a side effect will be for Luukas to lose his appetite. This is a bit worrying. So far we've been so happy that, unlike many handicapped children, Luukas has had no problems with eating.

Luukas sits better, finds his balance better and in some extent uses his hands –mostly in the front line - to protect himself from falling down, holds his head better, chews and bites food better, more or less drinks from a cup, holds his bottle while drinking from it. Turns to his back from the sides and from the sides to the back. There is still much problem with turning from the belly, but we are still working on it. When we make and help him do it, he is able to hold himself on his hands for a moment, as well as to stand by himself without support for a moment. In some extent, and with our help, he is able to bend and straighten his knees.

Luukas is a happy little man, who likes to shout and scream and laugh at his own voice, as well as when we say "funny" things to him. He is starting to communicate with his shouting with us, and it is a fun game :)

In the middle of our problems there are many blessings. God willing, at the beginning of autumn Luukas will have a baby sister :) A huge blessing is Ania who is now living with us and exercises with Luukas every morning. She is such a help! God bless you, Ania :) The fact that Luukas' epilepsy is being taken care of by the greatest Finnish specialist in infantile spasms, and that Luukas' ophtamologist is also a very educated and skilled lady, are also our blessings. Or the fact that we have such nice and helpful people as Luukas' neurologist, physical therapist, and now also a speech therapist. And of course our friends, both IRL and on-line, who've been praying for Luukas and helping. Thank you very much!

Update

The movementa are indeed epilepsy. It happens several times per day, after Luukas has woken up.

Summer 2007

Another EEG, taken in July, showed no epileptic attacks, although we can't be sure whether attacks do occur. Especially that, upon waking up, Luukas' head and eyes make some involuntary movements. A Polish doctor warned us against Lukas' shutting from the world, so we've been helping Lukas to pay attention to people. Luukas has been the happiest ever in recent months, he laughs more, shouts happily and is lively. He turns from his sides to his back (it seems that he prefers to lie on his back) and is able to grab his feet without us helping him. He takes a look at people's faces sometimes and grabs toys. He sits better (still needs help) but his physiotherapist is certain that he will sit by himself. Luukas has started to chew and bite food, and he claps his hands and claps them a lot :) He loves water, he enjoys our Saturday morning swimming and sauna very much. Luukas walks in shallow water when we are holding him, but due to his CP he walks on his toes.

Someone has written a comment that only science will help Luukas. Well, science, yes, but not only. See the posts below :) Oh, and we ARE using scientific methods to help Luukas.

To all those who pray. Please continue. Thank you!

Spring 2007

Luukas went to Lourdes at the end of February. A few hours after we came back they called us from the hospital to tell us that there is a place for a video EEG for him, as someone had resigned. They found out that Luukas' uncontrolled movements is indeed epilepsy. It could slow down his development even more. Well, it wasn't good news, but we started treatment a couple months before Luukas' planned video-EEG. Luukas got livelier now and his attacks got smaller, but we could still see what looked like attacks.

Our novena to the 14 Helpers, including St Vitus, the patron of epilepsy, ended on the day preceding his feast. Luukas' another EEG was planned on a June day, but because Luukas had a flu, it was postponed to June 15. We didn't realise first that it was St Vitus' day. The EEG showed epileptic activity, but no attacks. This doesn't necessarily mean that there are no attacks. If they are, they didn't occur at the test. It was a nice surprise! It looks like it is better now than in the previous EEG. :)

Luukas' eyesight has improved. He still sees quite badly but better than before. Luukas is now wearing glasses to help his significant myopia, but his main visual problem are the damaged visual nerves.

Luukas has got special shoes to stand and sit in, a chair and a standing board. This all is meant to help him learn use his muscles and keep his position properly. It doesn't guarantee that his muscles stiffness will go away. Let's see.


Luukas' achievements: he "speaks" more sounds, uses his hands better, holds his back better (sits and stands better when we help him), sometimes he is able to more or less sit by himself for a moment. Luukas feels better and is more flexible while on his tummy, can hold himself on his hands a bit, enjoys our talking to him, concentrates when we play with him, likes to touch his head and toes. Luukas seems to understand his name, mom and dad in Polish and Finnish, and to understand the rules of a couple of games. He starts crying when an interesting activity is suddenly stopped. He reaches out to things more often. He started to turn to his left side again (which he had forgot some time ago).

Winter 2007

Luukas' EEG is still highly abnormal, with epileptic spikes so he is still getting medicine. We are now changing his baby-medicine to adult-medicine because he is so "big" already. He has never had an attack but he has some little uncontrolled movements.

Luukas has brain damage, but there are also good cells, even in the cortex. So perhaps I should forget the words of an ICU neurologist in June: "terrible, terrible damage". The lower parts of the brain, the better. Luukas' cerebellum is almost completely untouched, while in June they told us it was squeezed by the swelling in his brain.

Funny thing is that Luukas has much damage in the hearing area of his brain, but his hearing is normal. His eyesight is progressing, although it is still far from perfect, and the vision part of Luukas' brain is not very bad, so in time he might see better and better.

Luukas' current neurologist says she can't say how he will develop, but he will be developing. :)

Thank you and please continue to pray for Luukas.

Summer and autumn 2006

Luukas had breathing problems after his GBS disease. At the beginning of August he was in hospital for a week due to bronchiolitis. After that his breathing changed for better. We have a machine for inhalation that we use when Luukas has some breathing difficulties caused by viruses. We and our friends have been praying for Luukas' breathing and health, especially that doctors have been warning us about his higher risks for infections. The machine has not been used since mid-October, thank God.

Luukas' new EEG, run in September, was highly abnormal, but it was so much better than the June "nothing at all". The doctor cannot say what it will be like in the future.

In October Luukas had his brain tested for hearing and seeing. The former was fine while the latter showed no reaction. We had noticed he must have a problem with his vision but we did not expect the test turning out that bad. From 4 to 12 December we and our friends (thank you!) prayed a novena to St Lucy, the patroness of people with seeing difficulties, that Luukas can see. On 13 December, i.e. on St Lucy's day, Luukas had an appointment in the Helsinki eye clinic where he reacted to visual stimuli better than ever before. It is obvious now that Luukas sees, although his vision is far from perfect. 13 December is also the day of St Odile who was born blind and recovered her vision at the moment of her baptism.

Luukas' achievements: he "speaks", "sings", enjoys music, enjoys bright objects and black-and-white stripes, smiles, laughes, explores surfaces with his hands, is starting to reach out his hands to things, is beginning to turn, as well as sits and stands for a while holding our fingers.

And don't tell us there is no God or that He does not care.