<\/p>\n
This is not going to be JUST one more in a series of stories \u2018told\u2019 about physical and other aspects [of the condition], or of the effects of human carelessness or lack of professionalism and incompetence of a number of \u2018those who have taken the Hippocratic Oath\u2019 and who are responsible for Danis\u2019s condition and the condition of many other \u2018Danises\u2019.<\/p>\n
This is also a big THANK YOU to all those kind people who believed in us, the Kadi\u0107 family, all its members individually \u2013 our son Danis, Mommy Lara and Daddy Hamet…among others, because they did not consider Danis a lost cause.<\/p>\n
Dear Parents, especially first-time parents, there are and there will ALWAYS be those who will tell you that your child is \u2018completely ok\u2019, that they are \u2018experts\u2019, and that there is no need for you to take your child to other experts.\u00a0 There will also be those who will say that your child is a lost cause and that he will die attached to tubes (heaven forbid that you experience this situation), that he will not be able to hold a spoon in his hands, that you should \u2018work on the next one\u2019 (which I suppose figuratively means that \u2018this one\u2019 should be thrown into the rubbish bin), or they will say, \u201cWhat are those people doing there! They are ruining our nation, degenerating our people, sending us ruined children! Oh yes, your child \u2013 I cannot help your child now; it is too late…He will never crawl, he won\u2019t be able to sit, walk, live long.\u201d\u00a0 And there will be those who say, \u201cYes, this is not good.\u00a0 Go somewhere else, but don\u2019t tell them that you heard that from me.\u00a0 You know, those are my \u2018old colleagues\u2019, that\u2019s not really appropriate, believe me…, I\u2019ll have problems…\u201d.\u00a0 Yes, it is \u2018those people\u2019 who must learn to love the human race before regarding their work (which is undeniably difficult, demanding, and full of responsibility…) as \u2018a means of gaining financial reward\u2019.<\/p>\n
I can only say: believe in your child, believe in your heart, in yourself, and believe in work and discipline. And search, don\u2019t give up! When the \u2018right one\u2019 comes along \u2013 who will help your child, who will give you back hope, give you a reason for existing \u2013 you will feel just as we did two years ago in Zagreb at the Polyclinic for physical medicine and rehabilitation.<\/p>\n
Then, be prepared to give up EVERYTHING \u2013 your personal and private life, your friends, family, going out in the evening, shopping and luxury shops, romantic dinners, TV and watching football \u2018with a cold beer\u2019.\u00a0 Yes, maybe you will be told, as we were (heaven forbid), that \u201c…you have a less than one percent chance that your child will stand on his feet in about 10 years in some form or another, but know that that will be the best that he can do\u201d and at that moment, your child\u2019s rehabilitation WILL BE YOUR WHOLE WORLD.<\/p>\n
And then, after many long hours of strenuous exercise, sweat, sacrifice, tears cried in the night when no one sees you, when everyone else is sleeping peacefully and dreaming sweetly, you dream that undreamt dream \u2013 beauty appears at once; you have a child who is in your arms \u201825-hours\u2019 a day, every second you smell him, feel his breath, not one moment of\u00a0 his life passes by unnoticed by you and you have a child who is progressing, every day, more and more, who loves you unconditionally in his own innocent, truthful, childlike way and you love him unconditionally \u2013 and this is your whole world!!<\/p>\n
Our son Danis, as Prof. Polovina says that \u2018emotional, warm, curious child\u2019 or \u2018the big little fighter\u2019, as the media here call him, is now three and a half years old.<\/p>\n
Until he was six months old, the neonatologist at the County Hospital considered Danis to be a \u2018healthy child who only needed to exercise his hips\u2019.\u00a0 At the beginning of his seventh month of life, we noticed that our son was making some slightly unusual and specific movements and grasps.\u00a0 For example, when Danis held an object, it was impossible to take it from him because of his firm grasp.\u00a0 The family was happy about this and they said that he was strong like his father the karateka (the karate practitioner).\u00a0 Occasionally Danis\u2019s legs would become stiff or his foot would become slightly bent (but this was barely visible to lay-people and first-time parents like us).\u00a0 We didn\u2019t pay attention to the fact that his thumbs were sometimes enclosed within his fists.\u00a0 When we reported our observations to our paediatrician we were told, \u201cThat is nothing; exercise his hips, take some vitamins, go to the health centre and do\u00a0 exercises in the physiotherapy department [where there is NO paediatric physiatrist but where we did go every day for about 1 \u2013 2 months], and everything will be ok.\u201d\u00a0 After that Danis received a \u2018little vitamin cocktail\u2019 \u2013 a shot that shocked the nurses at the Children\u2019s Clinic because they couldn\u2019t believe that something like that was allowed to be given to babies.<\/p>\n
No, but we persevered.\u00a0 You must be PERSISTANT and TEDIOUS.<\/p>\n
When my brother (who has two daughters and experience with children) noticed that \u2018that\u2019 with Danis wasn\u2019t \u2018really normal\u2019 and advised us to surf the Internet, our world caved in.\u00a0 According to the participants in various forums concerned with problems of sick children, we guessed that something VERY BAD was happening with Danis \u2013 something in the brain.\u00a0 Since Danis was already almost nine months old by that time, and in the forums it said that that was already \u2018much too late\u2019 for timely and successful treatment of disorders of that kind, we requested an MRI of Danis\u2019s brain at the Clinical Centre of the University of Sarajevo, which was difficult, but which we managed to accomplish.\u00a0 That is to say, in Bosnia and Herzegovina one waits for an MRI of a child\u2019s brain for a couple of months \u2013 MRIs (for children from all over Bosnia and Herzegovina) are only done on Fridays.<\/p>\n
After completing the MRI of Danis\u2019s brain our fears, anxiety and sense of foreboding proved true.\u00a0 It was explained to us that the problems with Danis were most likely caused by human error during delivery or in the post-natal period because of inexpert and inadequate medical care (which, according to the doctor, would probably be confirmed after the follow-up MRI was done in about 8-9 months).\u00a0 In short, periventricular changes (on both sides of Danis\u2019s brain) were detected, which could correspond to post-hypoxic changes, but the onset of leukodystrophy could not be excluded.\u00a0 We were told (off the record) that this second possibility was included in order to give us a possibility of doing a second MRI, and of course, to \u2018cover themselves\u2019 \u2013 as I see it in hindsight.\u00a0 For us \u2018lay-people\u2019, and translated into everyday language, we were told that as a result of a short deprivation of oxygen to our son\u2019s brain, Danis\u2019s brain was damaged; tiny, dead, amorphic masses \u2013 scars in the brain, which cannot be healed or repaired \u2013 were the result.\u00a0 To quote the specialists, our son\u2019s brain, \u201cwas as full of holes as Swiss cheese\u201d and repair was impossible; we were told that we could \u201conly do a little to make his days easier\u201d, and were asked where we had been until then \u2013 \u201cyou\u2019re too late,\u201d they said.<\/p>\n
What did we HAVE?\u00a0 Simply put, a 12-month old baby, who did not roll and who did not crawl properly, a son whose hands and feet were already beginning to become deformed and occasionally stiff, as if in a cramp, a frail child, who at one year of age could not, didn\u2019t know how to, and was not allowed to sit and who had a stooped posture, a son who turned into a \u2018banana\u2019 when he was excited, a son whose legs went up when you moved his head down, a child whose thumbs were always inside his closed fists, a child, who could not lie on his elbows because he immediately fell uncontrollably and hit his head on the floor, a child who didn\u2019t have any protective reactions.<\/p>\n
In \u2018medicalese\u2019 [at the beginning you may find it difficult to find your way around the vast number of medical terms] Danis\u2019s condition was as follows:<\/p>\n
\u201c…Danis K., 11.5 months old.\u00a0 Spontaneous mobility inadequate for age.\u00a0 According to mother, rolls from back to stomach more often on the right side.\u00a0 During traction response modified by Vojta the head follows the thorax.\u00a0 When he is put in a sitting position, he cannot sit independently; pronounced curvature of the spine.\u00a0 The forward protective reaction is just being formed.\u00a0 The side protective reaction has not yet been formed.\u00a0 Axial hypotonia evident.\u00a0 During the Collis horizontal reaction, performs support reaction on hands extremely slowly with greater deviation at the lower extremities.\u00a0 Evident deviation during Vojta reflex.\u00a0 On axillary suspension crosses the lower extremities, hyperextension with increased miotatic reflex, etc., etc….Therapy: it is essential to intensify the rehabilitation treatment according to Bobath.\u00a0 Essential to begin treatment according to the Vojta method; necessary to train the mother in this method [why not the father, too!?].<\/p>\n
And we began with rehabilitation \u2013 FIVE whole days of training!\u00a0 At the end we were told, \u201cDanis will never stand independently, will probably not crawl, eat independently, or write either.\u00a0 This [i.e. the treatment] is just to improve the quality of his [ruined] life, to make it easier for him until \u2013… no one knows \u2013 probably not long.\u201d<\/p>\n
We exercised.\u00a0 And we didn\u2019t believe.\u00a0 We went to the physical medicine and rehabilitation department of the medical clinic for treatment and again we didn\u2019t believe that in this computer age, in the age of microchips, genetic engineering… that nothing could save our son.\u00a0 We searched, we surfed the Internet, we leafed through medical literature, and we bought National Geographic CD\u2019s about how the human body functions \u2013 especially about the brain and motor control.\u00a0 We searched for ways to improve Danis\u2019s motor control in the methodologies, training processes and techniques of various sports \u2013 psychologies, methods, especially our mental attitude; we cut out newspaper articles, used vitamin supplements (made from honey or with omega fatty acid supplements); we sought advice, prayed to God and we didn\u2019t even have a diagnosis of Danis\u2019s condition yet \u2013 \u201cYou will get that after five years, when the development process finishes,\u201d we were told in \u2018one of the institutions\u2019.<\/p>\n
And then one day, in the summer of 2007, during a chance meeting on one of the streets of our city, Dr Lilja \u0160e\u0161ti\u0107, an excellent paediatrician, warmly recommended (with a limitless guarantee) her \u2018dear professor from Zagreb\u2019 \u2013 Prof. Milena Stoj\u010devi\u0107-Polovina.\u00a0 \u201cIf Professor Stoj\u010devi\u0107-Polovina doesn\u2019t succeed in making your son capable of independent life, then, believe me, it\u2019s not likely that anyone will succeed.\u201d\u00a0 We asked about Professor Stoj\u010devi\u0107-Polovina in forums, checked scientific journals, asked friends, doctors including Dr. Karabeg and Dr. A. Buljin in the United States, Dr. Gasal-Gvozdenovi\u0107 \u2013 they all told us that they (if they were in that situation, heaven forbid) \u201cwould only entrust their child to Professor Stoj\u010devi\u0107-Polovina \u2013 not to anyone in America, Ljubljana, Cyprus\u201d.<\/p>\n
YES, at that same moment (we didn\u2019t waste a second), we contacted Professor Stoj\u010devi\u0107 Polovina and on 21 June 2007 in Zagreb, Prof. Stoj\u010devi\u0107 Polovina (whom we understood and discovered later on to be an expert for physical medicine and rehabilitation, an academic advisor from Kosirnikova Street in Zagreb) got her first \u2018glimpse\u2019 of Danis\u2019s condition.\u00a0 Can you imagine a WHOLE DAY examination!?\u00a0 Where we\u2019re from, \u2018in the middle of the mountainous Balkans\u2019 this examination lasts five minutes.\u00a0 Observing, monitoring and becoming aware of Danis\u2019s movements, \u2018symbolic\u2019 attempts, behaviour, Danis\u2019s motivation to show what he knows, observing both of us parents, analysing the way we carry out our exercises, how we make contact with our little one.\u00a0 She explained to us her \u2018methodology\u2019 and \u2013 what was then (and now) amazing and unbelievable for us \u2013 she told us that we could get an immediate diagnosis of Danis\u2019s condition, not \u2018in five years\u2019.<\/p>\n
Diagnosis: Cerebral movement disorder (tetraparetic pattern \u2013 stronger in lower extremities).<\/p>\n
Leukodystrophy, tuberosis, you know \u2013 the dying away of brain cells, or (heaven forbid) \u2013 genetics, chromosomes \u2013 all nonsense!<\/p>\n
Recommendation \u2013 rehabilitation treatment ESSENTIAL.\u00a0 What we were told: exercise and exercise (naturally \u2013 according to the professor\u2019s methodology, her approach, her method and her team \u2013 true-blue, expert, friendly.\u00a0 All of them always smiling and friendly, even when they are ready to drop; a Nescaf\u00e9 or Turkish coffee always waiting and juice and candies for the youngsters) and then exercise again \u2013 SUCCESS!? \u2013 GUARANTEED \u2013 in a certain form, if all of the above-mentioned principles are respected.\u00a0 Possible new problems? Naturally \u2013 but not with the child, or with the mother, probably with the father, \u2018the weakest link in the chain\u2019.\u00a0 If \u2018the head honcho\u2019 survives, our collaboration will be successful and will come to an end.\u00a0 WHEN!? In four, five, seven years, maybe sooner.<\/p>\n
So \u2013 that is that.\u00a0 We gave our word, we promised and \u2018started\u2019 \u2013 full throttle \u2013 just like an airplane taking off, to the very end!!!<\/p>\n
Here I won\u2019t talk about \u2018techniques\u2019, exercises, methods.\u00a0 You will get all that information in Kosirnikova Street, across the street from the “Sestre Milosrdnice” University Hospital.\u00a0 The close-knit team there does that magnificently and expertly.\u00a0 The head of the team is an extremely good person who loves all of our ruined children, our sons and daughters, and she is also a professor and scientist and mother and a caring grandmother; she is extremely expert, sometimes strict \u2013 we give you our word; Danis (a child with cerebral palsy \u2013 tetraparetic pattern, who after about two and a half years of work and exercise started crawling properly, a boy who was written of by most people) gives his word.<\/p>\n
YOU must develop and incorporate the training process in yourselves.\u00a0 For the child it is easy, he is a \u2018tabula rasa\u2019 (a blank slate) and he will accept everything that you \u2018programme\u2019 in him, teach him \u2013 incorrectly > incorrectly; correctly > correctly; but ALWAYS keep in mind that \u2018nature tends towards chaos\u2019, towards the \u2018wrong way\u2019 and that is why you must be there \u2013 physically and mentally \u2013 and pursue a goal set somewhere far on the horizon, at the zenith \u2013 a goal which you cannot reach for at least half a year, a year, because you will not see any improvement \u2013 and that is the key to everything, your motor, your moving force, your fuel.\u00a0 At times that are the most difficult for you and when neither you nor your partner want to live \u2013 find strength in yourself and exercise and exercise ad nauseum \u2013 remember your child, his (unquestionable) future, the friends who support you, the generous people who help you because they believe in you, in your child, other sick children.\u00a0 Be aware that you will not be able to do this alone; go public, talk, relieve your soul, and seek similar experiences.\u00a0 From this, take something that will raise your spirits, stimulate you (not what will not throw you over the edge \u2013 you were thrown there a long time ago, not of your own will or fault; it is good to climb back up).\u00a0 Leave your self-pity and hold your tongue; it could be worse, heaven forbid.<\/p>\n
Laugh, make jokes, because your child feels everything, understands everything, however strange and incomprehensible that may seem to you.\u00a0 Imagine \u2013 he is in your arms \u201825 hours a day\u2019; he will understand you with your touch alone, your thoughts, movement, scent.<\/p>\n
\u201cDaddy, why are you sad?\u201d Why, son…?\u201d \u201cWell, daddy, there is something dark between your eyes\u201d.\u00a0 Imagine, that frail child, not yet two and a half years old….!!?\u00a0 And he will memorise everything, copy everything.<\/p>\n
You must have a training process; you must develop it…How!?\u00a0 Create your own system, motivation, inspiration \u2013 but it must be constant, every day, every hour.\u00a0 In your thoughts when you are ironing, preparing lunch, eating.\u00a0 Seek new solutions, better motivation for him and for yourself.\u00a0 If needed, lie with your child on the floor, do a push up, straighten out your back and show him how to do it properly.\u00a0 Forget the generation gap, the distance, embarrassment \u2013 and always smile.<\/p>\n
When your child is drinking milk, when he is laughing and watching TV, work with him and then work some more \u2013 with his fingers, lightly on his feet, with his hips, his thighs.\u00a0 Stretch-bend on the way to Zagreb, in the car, while walking to the Polyclinic \u2013 \u201cfingers, son\u201d, \u201ccareful, thumbs out\u201d, \u201cstraighten your back\u201d.\u00a0 Nice, in a cultured manner, with respect because he, that \u2018little one\u2019, has a soul, pride.\u00a0 If anyone deserves respect then it is those \u2018little ones\u2019, who didn\u2019t do anything to deserve the fate that befell them.\u00a0 You should at least try to make their lives easier, to make them accepted, because their lives are difficult in and of themselves \u2013 without a childhood, or playing with friends, or the other joys of childhood, all they have is work and discipline and a little bit of relaxation.\u00a0 They are little heroes, with big hearts.<\/p>\n
And write, draw!\u00a0 Record every breakthrough, every movement, every observation, every hint your child makes \u2013 be it positive and good or negative and bad.\u00a0 Focus on the bad \u2013 you don\u2019t need the good \u2013 because that is ok on its own.\u00a0 You must improve the bad; only then is there progress, steps forward, little by little.\u00a0 There are no leaps overnight; find beauty in small steps and WRITE and observe and record.\u00a0 Make files, databases, binders, photo albums, video recordings. Only then will you see any progress; help yourself so that you don\u2019t lose heart when it is difficult \u2013 and there will be moments, hours and days \u2013 I assure you!<\/p>\n
Multiply yourself! You must be realistic; you must be your child\u2019s physiotherapist, and teacher and counsellor and best friend and parent; you must sometimes be strict, when that is necessary but in small doses because the biggest mistake you can make \u2013 a grave disservice \u2013 is to treat him like a \u2018sick person\u2019 and give in to his wishes all the time.<\/p>\n
Zenica to Zagreb once per week, then twice a month; and now once every month or month and a half.\u00a0 Naturally, because of Danis\u2019s progress \u2013 fantastic progress.<\/p>\n
We were told at the Sveti Vid Specialised Ophthalmology Polyclinic in Belgrade, Serbia (where Prof. Autrate from Switzerland and the polyclinic staff headed by Dr. M. Dragovi\u0107 successfully operated on Danis to correct his strabismus and to solve problems related to his amblyopia) and at the BEL MEDIC special polyclinic that Danis\u2019s success was unbelievable \u2013 that a three and a half year old child with cerebral palsy could crawl properly; they said they had the VMA \u2013 a first rate medical institute in Belgrade and a Vojta Institute in Novi Sad but until now, as far as they knew, no one had been able to get such good results.<\/p>\n
On the 28 May 2008 during a regular check up, Dr E.G. (Zenica Canton Hospital) concluded, and I quote: \u201ccontinue rehabilitation with Prof. Polovina in Zagreb…visible progress in motor development.\u00a0 Attached are lab results and other test results following detailed neurometabolic and genetic tests in Italy. [Danis was also in Fiorenzuoli d\u2019Arda, Bologna, and Torino for medical tests]. Uses Radial Palmar grasp with both fists; has mastered rotation; lower extremities \u2013 visible progress, less on the right side, crosses legs only sometimes.\u00a0 Objectively: he plays, communicates, and understands; he is communicative, emotionally warm \u2013 EVIDENT IMPROVEMENT, which is the result of daily work and the successful leadership of Prof. M. Stoj\u010devi\u0107 Polovina, specialist for physical medicine and rehabilitation from Zagreb\u201d.<\/p>\n
And again \u2013 6-7 hours of \u2018active\u2019 exercise per day.<\/p>\n
By 2.5 years of age Danis\u2019s protective reactions had been formed including the side protective reactions.\u00a0 Spontaneous motor control had greatly improved, as had hip abduction.\u00a0 Danis could then already support himself (in prone position) on his elbows and stretched out arms and he could lift the upper part of his body correctly and in the proper form.\u00a0 On axillary suspension he no longer crossed his lower extremities \u2013 AT ALL!<\/p>\n
Trips to Zagreb are now once every 20 days.\u00a0 On 2 December 2008 in Zagreb at the Professor\u2019s, in the presence of her always smiling and courteous staff, Danis did his first \u2018women\u2019s\u2019 [my term] push up; this was a sure sign of Danis\u2019s incredible progress and a sure sign that Danis would start walking \u2013 sooner than we thought \u2013 somewhere around his 6-7 birthday.<\/p>\n
Then, at the professor\u2019s suggestion, we made a decision (we gave a firm promise) that we would work with Danis to ensure that he started walking properly, correctly, according to the correct pattern.\u00a0 Now twice the work, discipline, and effort would be required.\u00a0 Because progress was apparent \u2013 he would start walking in some form or another in any case \u2013 why not put in the extra effort to ensure that he walked correctly, correctly enough that someone who didn\u2019t know Danis\u2019s life story wouldn\u2019t even notice the \u2018battles\u2019 that Danis had led \u2013 or at least they would find it very hard to notice.<\/p>\n
And here we are now, TODAY, in September 2009, Danis, 3.5 years old, has been crawling for some time.\u00a0 Two months ago, during his first attempts, he couldn\u2019t pull up his right leg well, his crawling was unsure, it was poorly coordinated; he often fell.\u00a0 Now, in the middle of September, he can crawl across the kitchen, across the dining room and through the hallway, into the room ALONE, WITHOUT ANYONE\u2019S HELP, CORRECTLY AND ACCORDING TO THE PROPER PATTERN.\u00a0 Once again, a big THANK YOU to Professor Polovina; thanks to your whole team \u2013 you are spectacular.<\/p>\n
THE END??? \u2013 Soon, God willing, \u201cbefore he starts school, for sure,\u201d says the professor.\u00a0 And as you know yourselves, LOVE is needed for everything.\u00a0 The team from Kosirnikova 14 has that; they know, they respect you, your work, effort, your fate, your child.\u00a0 And that is the only way forward.<\/p>\n
P.S. This was supposed to be a warm-hearted confession of concerned parents, if that is possible for this topic, a true story, still unfinished, about the EXTRAORDINARY progress that was made and barriers that were penetrated, the existential truth about how the word \u2018IMPOSSIBLE\u2019 could be given a different dimension, if directed by the right people, true humanists.\u00a0 We give our thanks to these people \u2013 dedicated to their profession, to science, to charity, to loving their neighbours \u2013 and for a successful story with a \u2018happy ending\u2019, God willing.\u00a0 We live in hope.<\/p>\n
HameK<\/em><\/p>\n","protected":false},"excerpt":{"rendered":" For my son \u2013 so he may know (Confessions of a concerned parent of a child with Cerebral palsy) This is not going to be JUST one more in a series of stories \u2018told\u2019 about physical and other aspects [of the condition], or of the effects of human carelessness or lack of professionalism and […]<\/a><\/span><\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"open","template":"","meta":{"footnotes":""},"class_list":["post-555","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/otroskarehabilitacija.si\/en\/wp-json\/wp\/v2\/pages\/555","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/otroskarehabilitacija.si\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/otroskarehabilitacija.si\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/otroskarehabilitacija.si\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/otroskarehabilitacija.si\/en\/wp-json\/wp\/v2\/comments?post=555"}],"version-history":[{"count":3,"href":"https:\/\/otroskarehabilitacija.si\/en\/wp-json\/wp\/v2\/pages\/555\/revisions"}],"predecessor-version":[{"id":558,"href":"https:\/\/otroskarehabilitacija.si\/en\/wp-json\/wp\/v2\/pages\/555\/revisions\/558"}],"wp:attachment":[{"href":"https:\/\/otroskarehabilitacija.si\/en\/wp-json\/wp\/v2\/media?parent=555"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}