Dawno nie robiliśmy sprawozdania! Chociaż staramy się dzielić na bieżaco wydarzeniami na lilkowym funpage to jednak jest kilka spraw, które gdzieś się tam pojawiły w naszym życiu, ale nawet nie było kiedy się pochalić czy pożalić. Więc dzisiaj temat ,,co nowego” u Lilki!
Orzeczenie o niepełnosprawności:
Kiedy Lilka się urodziła, komisja do orzekania o niepełnosprawności z wielkimi perspektywami oceniła jej stan zdrowia. Przeczenie zostało wydane na rok. Nie wiemy, czy jest jakieś rozporządzenie, które mówi, że dzieciom w takim stanie jakim jest/była Lilik daje się orzeczenie tylko na rok, czy właśnie była to wizja, że mała jakiś cudem zacznie funkcjonować jak zdrowe dziecko. Rok minął, orzeczenie się skończyło, a cudu brak. No więc, rodzice jeszcze raz musieli przejść przez komisję. Tym razem orzeczenie zostało Lilce przyznane na 3 lata. Na wszystkie cuda, Lilka sama ciężko pracuje. Mimo, że jeszcze wielu postępów nie ma na horyzoncie, to wiara nas nigdy nie opuściła. A i wy pokazujecie nam na każdym kroku, że mamy SWOICH Aniołów Stróżów.
Także, co jak co, ale na 3 lata będzie jakaś stabiloność z tym orzeczeniem. Plus Lilka dostanie kartę parkingową dla niepełnosprawnych. Dla rodziców MEGA odciążenie, tym bardziej, że jeżeli uda się za chwilę wyczarować wózek, który do lekkich nie będzie należał
Akcje dla Lilki:
Tutaj byliśmy bardzo poruszeni pieknymi gestami naszych zagranicznych Aniołów. Ciocie i Wujkowie z Beneluxu uzbierali dla Lilki ok €1600 – większość, jak nie wszystkie wpłaty zostały już przelane na subkonto Lilki w Fundacji Słoneczko. Druga akcja to charytatywny turniej piłki nożnej w Tilburgu. Tutaj Fundacja Białe Orły uzbierała dla SZEFOWEJ ok. €2500
Filmiki z podziękowaniem znajdziecie tutaj:
Wózek specjalistyczny:
Wózek – tutaj siły wyższe miały coś nam do przekazania, ale o tym będzie zupełnie osobny post. Ok, więc, jakimś cudem trafiliśmy do sklepu ze sprzętem w Złotowie. Lilka przymierzyła wózek i pierwszy raz zobaczyliśmy, jak ona się czuje we wózku specjalistycznym. Nie było marudzenia! Nie było płaczu! Było 45 minut zadowolonej buzi! Wręcz się uśmiechała. W wyglądała w tym wózku tak:
Pro-Forma jednak sprawiła, że nas, zabolało pod łopatką… No tak – sam 13205 pln. Wózek z podstawką pokojową 17005 pln. Aaauuuuuuu boli… Też czujecie ten ból, patrząc na te liczby?!
To jest coś, co naprawdę jest nam potrzebne. Doradzane przez rehabilitantów. Lilka nie może jeździć w zwyczajnym wózku. Z waszą pomocą Lilka ma rehabilitacje, żal aby wszystkie pieniądze, które poszły na polepszenie jej życia oraz cały ten wysiłek jaki wkładają rodzice i ona sama w to, żeby zaczęła jakoś funkcjonować, przepadł. Taki wózek i podstawka ( siedzisko wózka przekłada się do podstawki pokojowej i Lilka dalej jest asekurowana i ma prawidłową podstawę), mają też ją rehabilitować. Jednocześnie wspomagać to, co uczy się w Zabajce i u rehabilitantów.
Cena boli, boli… Od stycznia zaczynamy prosić wszystkie możliwe duże korporacje, fundacje i instytucje o dołożenie się do tego urządzenia. NFZ – tutaj mam nadzieję, że spojrzy Państwo Polskie przychylnym okiem na potrzeby niespełna 2 letniej Lilki. My wiemy, że są wyjątkowe sytuacje i indywidulne rozpatrzenie tego całego zapotrzebowania. Miejmy nadzieję, że NFZ zgodzi się na refundację 3000pln w związku z tą potrzebą wózka. Dalej będziemy szukali też środków w PCPR – jak dużo i czy w ogóle nam pomogą? Ufff.
Pobyty w szpitalu:
Kolejną informacją dla was są 2 pobyty w szpitalu. Dane uzupełnione będą lada dzień na www.lilkowesloneczko.com Jak my wspominamy te pobyty? No tak nie za ciekawie… Żaden do końca nie spełnił naszych oczekiwań. A były to podstawowe oczekiwania. Na pierwszy pobyt czekaliśmy, aż rok! Na drugi trafiliśmy dość szybko, tylko że cały pobyt. Jakieś 13 godzin(?) nie mieliśmy swojego miejsca, więc jak bezdomni koczowaliśmy od badania do badania w jakiejś poczekalni. Lilka spała na 2 krzesłach, o rodzicach nie wspomnę. Ci oczywiście czuwali cały czas, ale kręgosłup to się złożył na cześci chyba. Do teraz nie mamy pełnych wypisów i wyników badań :/
Faktura za zajęcia w Zabajce:
Już spory czas temu zakończyła się ZRZUTKA. Pomogliście uzbierać 5100 pln! Początkowo miała ta suma iść na 1 turnus w ZABAJCE, ale ostatecznie rehabilitaci, postanowili zakwalifikować Lilkę na zajęcia dla dojeżdzających. Rodzice bardzo zadowoleni! Lilka też nawiązała relacje i chce ćwiczyć w ZABAJCE. Dopiero teraz dostajemy faktury za ten okres. Pierwsza została opłacona i to była faktura na sumę 1780 pln. Mamy jeszcze w puli 3320 pln. Za chwileczkę dostaniemy kolejną fakturę.
Depakina i Sabril:
Zejscie z Depakiny i podnosimy dawkowanie Sabrilu – decyzja doktor Winczewskiej. Na sercu ciężko, ponieważ Sabril ma wiele skutków ubocznych i bardzo duży wpływ na wzrok małej. I tak za ciekawie nie było na ostatniej wizycie u okulisty. Strasznie boimi się kolejnej wizyty. Zejście z Depakiny ma swoje plusy, Lilka zaczyna się zachowywać jak dziecko! Nie jak przymulona maskoteczka, bez radości życia. Leki przeciwpadaczkowe tak działają, że dzieci często się nie śmieją. Teraz Lilik zdaje się częściej cieszyć ,,czymś”. Czym ona się cieszy? No chyba wszystkim – tego się jeszcze nie nauczyliśmy! Pan Bóg zdecydowanie ułatwiłby nam życie, gdyby dał jakąś instrukcie obsługi dla Lilki…a tak sami musimy się domyślać i jej uczyć.
Co gadają ludzie:
Co nowego gadają?! Lekarze mówią, że Lilka będzie leżąca… A niech ludzie gadają! Lekarz zawsze musi mówić najgorszą wersję chyba! Jesteśmy dużymi optymistami. Już życie swoje niejednokrotnie zweryfikowało, że nie zawsze co mówią lekarze w 100% się sprawdza. No my, nie będziemy czekali bezsilnie czy się wizja lekarzy sprawdzi i działamy. Działamy Z i Dzięki waszej pomocy! To daje też energię do działania!
Wyjazd do Holandii:
W tym roku ciocia z rodziną nie przyjedzie na Święta do Polski. W tym roku, Święta przyjadą do cioci! Wielkie wydarzenie dla Lilki i rodziców. Pierwsze wakacje od niepamiętnych czasów! Rodzice Lilki oszczędzali się, kiedy jeszcze szefowa była w brzuchu u mamy. No potem, to sami wiecie co się stało. I tak mijały te wszystkie miesiące stresu i walki o lepsze jutro. No i padła decyzja, że rok 2016 zamykamy w Holandii. Dużo spraw do załatwiania. Zgoda od neurlog jest, zapas leków jest, EKUZ jest. Ha! W tym wszystkim zapomnielismy od paszporcie hihihi. Pani neurolog nam przypomniała i za chwilę będziemy odbierali Lilkowy paszport. Ponieważ schodzimy z Depakiny, jeszcze tak dobrze Lilki nie wyczuliśmy i nie wiemy o jakiej porze dnia będzie dla niej (i dla nas) najkorzystniej wyruszyć w najdłuższą dotychczas trasę. Czy się denerwujemy? Pewnie, że tak! Życie to nie tylko choroba! Rodzicom i Lilce ten wyjazd jest potrzebny!
Karmienie:
Dalej nie jesteśmy zadowoleni. Ciągle te same problemy, które zakończyły się z momentem kiedy podano Lilce ostatni zastrzyk Synacthenu. Pani Neurologopeda, pracuje z Lilką na najwyższych obrotach. Więc próbujemy nowego sposobu, który w sumie zadziałał od pierwszego razu, ale jeszcze nie doszliśmy do jakiegoś punktu zwrotnego. Także, jak zobaczycie Lilkę w czasie karmienia to się nie wystraszcie! Mama ją smaruje najpierw tym jedzenie. Rączki, buzie itd. Dopiero jak Lilik jest wysmarowana, zaczyna karmienie. Jest to związane z odwrażliwianiem jej ciałka.
Modlitwa:
Na zakończenie mamy dla was WYJĄTKOWĄ prośbę. Uprzejmie prosimy o modlitwe 08.12.2016 pomiędzy godziną 12.00- 13.00 , abyście poprosili Martkę Boską o zdrowie dla Lilki. Odmówili za Lilunie Zdrowaśkę. Jest to dla nas bardzo ważne i bylibyśmy wam bardzo wdzięczni, gdybyście wspomogli Lilkę modlitwą.
Jeżeli jesteście niewierzący, to chociaż pomyślcie o naszym kochanym Słoneczku w tej godzinie, żeby było łatwiej…żeby nie bolało…żeby były postępy…żeby był uśmiech… To co chcielibyście jej życzyć.
Nie zdążyłeś/łaś się pomodlić? NIE SZKODZI! Matka Boska jest zawsze z nami! Wspomagaj Lilkę i inne chore dzieci modlitwą kiedy możesz!
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