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When I learned that I am pregnant with a son I was very happy because I already had two daughters 19 and 17. The pregnancy was smooth and little Timur was born on 01/01/2007 at 11 AM, big and healthy. After five days we were released from the hospital but our happiness was too short ...










On January 13th right after the evening breast-feeding Timi began to choke and wheeze, he went pale and lost consciousness ... We knew that something went wrong and ran to the medical emergency. Doctor stated that the baby is a bit pale and sleepy and she recommended us to go to the hospital. Then we knew that she had misjudged the situation and had to call the ambulance immediately instead of sending us to the hospital.

When we came to the hospital and rushed into the emergency room our little Timur stopped breathing in my arms. The doctor called the superintendent and they began the resuscitation. I could not answer any questions. I did not understand anything and was just looking without a word. Timi had been brought to the Intensive Care Unit (ICU) and we spent the worst and longest hours in our lives in the cold hospital corridor. When we were called to our son, he was in an incubator connected to strange devices with tubes and cables. Next day I moved to the ICU and if somebody then had said to me that my stay might last six months I would have argued that it is impossible to withstand. Believe me, it is ...






Timi, breath!

Our little son had underwent various tests, mostly neurological, because he could not breath on his own. I could not take him into my arms for two months but all the time I caressed him, sang to him, talked about our family and I was repeating that he was healthy and had nothing to do there. I encouraged him all around: "Please, Timi breath on your own, breath, deeply breath..." These words I am repeating till this very day ...

What happened?

The reason is unknown but little Timur survived a stroke near to his medulla, what is the center of vital functions. As a result, his breathing is insufficient and he needs support ventilation. He has a tracheotomy - an opening in his neck. He has also dysphagia - imperfect swallowing and that is why he receives food through a tube connected directly to his stomach which comes out on his belly. He had underwent two brain surgeries, nine anesthesia and numerous examinations and specimen collections.









For more than a year we fed Timi through a tube inserted into his nose and I believed that it was temporary and he would eat alone soon. Unfortunately it was not the case. He has a low muscle tone especially on the right side of his body and he does not have coughing and vomiting reflexes.

My poor medical knowledge was an advantage. I did not admit the seriousness of the situation because I saw flickers in Timi's eyes and an impish smile on his lips.

Home is home, but ...

After six months we took Timi home from the hospital with a variety of appliances and medical material to keep him alive at home. Even though we were happy to have him home the rest of his first year of life was the toughest for us. In the hospital he was medicated but at home we started to leave out the medication. Although Timi was more sensitive he had also seizures several times a day when he went cyanotic and strove to breathe, he could not sleep, and could not tolerate the ventilation device.










We had to save his life by supporting his breathing couple of times per day by a resuscitation bag and oxygen. He had choked with his saliva and we were suctioning him over and over. We did not sleep enough and were exhausted and helpless. I did not want to go back to the hospital. I requested assistance at various Bureaus and Institutions - but since I was on maternity leave I was not qualified for any assistance.

At that time repeatedly happened that when my husband came home from work he found me as he had left me in the morning, hungry, in pajama and without personal hygiene done. It lasted for more than six months and since Timi still needed oxygen all that time we could not go out. Finally, we wanted to go to the hospital. We spent six weeks at the ICU in Bratislava where the doctors proposed to change the ventilation device. After three months in the hospital in Bratislava and then in Kosice we got home and better times started. It was already May, 2008.









Small-big progress

When Timi was one year old he could hold his head. When he was a year and a half, and his lungs got better, we finally disconnected the oxygen and we could at least go for short walks and visits. When he was two years, we started to go regularly for rehabilitation. From two and a half he could sit with assistance. A few months later Timi already stood with support and now he is trying to walk with hand support or in a special walker we are just testing and we would like to buy for Timi.












In the hospital therapists tried the Vojta method on Timi but he did not tolerate it and had affective seizures. More appropriate for him is the Bobath therapy we are regularly going for to the amazing Mrs. Berešova and Timi shows motoric improvement. We had absolved five acupuncture sessions in Budapest and we have seen improvements after first three applications. Last year we have found an interesting therapy performed by Dr. Sabová in Bratislava. Its name is SCENAR. Timi has already underwent it nine times and we saw a significant shift not only in the motor system, but also in his mental ability so we want to continue this therapy.






If we have the possibility we are visiting speech therapists and also special pedagogy and psychology sessions. We were also considering the treatment in Kováčová but there came an answer on our request that they do not treat children in condition as Timi ...


Timi's further progress is slowed by his respiratory insufficiency. At night and occasionally during the day we have to connect him to the ventilation device. Respiratory insufficiency is also evident at moments of strong discomfort when Timi goes cyanotic and cannot breathe. The worst it is at bedtime when this runs even for two hours.

Timi is taking supplements for the development of brain activity and increase of stem cell number. Timi had been taking anti-epilepsy drugs for two years although the diagnosis was not confirmed. Despite of taking the highest possible doses and different combinations of drugs he had and unfortunately still has affective seizures during which he is unable to breathe.

Timi is already one year without any medication as we have progressively omitted all drugs. Probably because of his sensitivity he understands a lot, tries to communicate with us (with hands and feet), has perfect face expression and "talks" using different syllables what makes us happy also because once a doctor had told me that his vocal cords are paralyzed and at a logopedic center we were recently asked what do we want as children with tracheotomy do not talk ...

The problem with swallowing

Another big problem is Timi's swallowing disorder. Timi can and also wants to swallow but his swallowing is imperfect. He is watching us as we eat and lately he started to taste food but it cannot be administered by mouth in bigger amount. If he swallows anything it would leak into his trachea and into the lungs so there is a constant inflammation risk which had already occurred after a failed feeding attempt.
After a long search we found - Dr. Bunova who is treating swallowing problems. After some tests she had given us some therapeutic exercises for swallowing. However we are considering the possibility to travel to England or Germany for VitalStim therapy that treats swallowing disorders.

Everything on the Earth for his smile

What is driving me forward is Timi's smile, his grateful look, his embrace. Little Timur is a very sweet baby, he gives and receive love, and likes to hug. From his early age he smiles a lot and he can enjoy things very intensively. He loves music and commercials. Recently we found out that he is very social and likes to show off.

We want to thank our parents who are helping us with the household and occasionally even financially, since I am on extended maternity leave. Furthermore, thanks to my daughters who weren't initially enthusiastic that I am pregnant but now they would not exchange Timi for anything on Earth. They can play with him for hours and always make him laugh. For all health care professionals who live for their work we thank Dr. Kurák.

I am sorry, however, that traditional medical doctors do not recognize any alternative therapy or supplementation that can help a lot in cases as our Timi is. Almost all the information I got from the Internet and from other mothers.

Our son really does not have any disease to be cured, neither a problem that might be treated surgically nor a syndrome, that has a recommended therapy. Doctors advise us to wait. Wait until his affected central nervous system regenerates. They admit that they did not expect such a progress.

We as parents are sure that we will achieve much more. From the very beginning we believe that Timur will overcome all problems and we will do everything in our power to help him.