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Najczęściej czytane

Nowości

2017

Czas biegnie bardzo szybko - Mateusz ma już 9 lat i miną kolejny rok zmagania się z jego chorobą. Po tak długiej przerwie mogę jedynie powiedzieć, że Mateusz dzięki comiesięcznym wizytom w CZD dość dobrze funkcjonuje. Oczywiście choroba jak tylko zorientuje się, że Mati jest zmęczony, słaby czy chory szybciutko daje o sobie znać. Wtedy pojawiają się częste i mocne szarpania całym ciałem. Mateusz znosi to bardzo dzielnie, zresztą jak na faceta przystało nigdy się nie żali i nie marudzi. Tak, tak Mateusz mimo dość dobrego rozwoju fizycznego ma duży problem z panowaniem nad układem nerwowym… mimo to jest dzieckiem bardzo pogodnym i dobrym, bardzo często to dzięki niemu pojawia się uśmiech na naszych twarzach… Po nieustannym i ciągłym leczeniu widać, że Mateusz coraz więcej czerpie z otaczającego go świata. Dzięki nieustającej terapii, ćwiczeniom i turnusom rehabilitacyjnym u Mateusza można zdecydowanie rozpoznawać niektóre potrzeby i emocje. Wyjątkowo skutecznie potrafi zasygnalizować potrzebę zjedzenia posiłku, jest bardzo wyczulony na prace mamusi przy blacie kuchennym. Mimo że wyrosły mu wreszcie dwa piękne ząbki to Mateusz nie jest mistrzem w gryzieniu. Staramy się go karmić porcjami które w razie odmowy pracy przez żuchwę można przełknąć. Należy przy tym stwierdzić, że Mateusz coraz częściej usiłuje posmakować i gryźć jedzonko zanim je łyknie jak kaczka… Praca mięśni żuchwy i języka może prowadzić i prowadzi do pojawiania się u Mateusza różnych zgłosek. Mateusz, gdy jest w dobrej formie usiłuje z siebie wyrzucić zdanie: ”po co miałem do tej pory gadać jak kompot zawsze przy obiedzie był”... Fajnie jest obserwować dziecko, które rośnie i na swój sposób się rozwija. My już prawie zapomnieliśmy, że Mateuszowi przez chwile nie działały obie ręce, potem przez długi czas nie pomagała mu w codziennych czynnościach prawa ręka. Były też momenty że Mateusz nie potrafił powiedzieć swoim mięśniom zjedzmy, czy napijmy się – wtedy było bardzo ciężko. W takich chwilach mamy oparcie w fenomenalnym szpitalu, który nie tworzą mury czy sprzęt, choć to jest też ważne, ale ludzie. Ludzie, którzy chcą leczyć dzieci nie patrząc przez pryzmat utrudnień systemowych. Mimo dość znacznej odległości za każdym razem, gdy Mateusz czół się źle dostawaliśmy pomoc, pomoc, która zawsze stawiała Matika na nogi… Jest tak do dzisiaj, bo tylko dzięki determinacji i uporowi lekarzy prowadzących Mateusza nasze dziecko rośnie i odbiera bodźce z otaczającego go świata. Dzięki ludziom którzy nam pomagają na różny sposób Mati często bywa na turnusach, staramy się mu zapewniać niezbędną ilość rehabilitacji wielokierunkowej, bo i tej fizycznej, ruchowej, ale także w sferze czuciowej czy doświadczania. To wszystko możliwe jest dzięki tym że sporo osób które kibicują Mateuszowi w drodze do poprawy jego zdrowia przekazuje 1% podatku na fundacją Zdążyć z Pomocą wpisując jako cel szczegółowy 11285 Bartman Mateusz

W chwili obecnej Mateusz cały czas uczęszcza do Gliwickiego Ośrodka Rewalidacyjno – Wychowawczyego dla Dzieci i Młodzieży Niepełnosprawnej i bierze udział w codziennych zajęciach w ramach I zespołu rewalidacyjno – wychowawczego (http://www.skpon.pl/gorw/grupy/zrw-i/). To w tym ośrodku Mateusz uczy się postrzegania, bierze udział w zabawach oraz ćwiczeniach, które mają w jak największym stopniu przystosować go do codziennych zmagań z wydawałoby się prostymi czynnościami jak chodzenie czy jedzenie. Podsumowując uważam, że trzeba walczyć uparcie z każdą chorobą, nawet wtedy, gdy wydaje się że ona całkowicie zawładnęła człowiekiem, bo każda chwila spędzona z najbliższymi w otoczeniu ciepła i miłości nawet z najtrudniejszej choroby robi mały jesienny katarek …
 

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