Zbieramy się na komisje… No tak, pierwsze nasze orzeczenie było na rok. Schorzeń 120, ale to wcześniejsze roczne orzeczenie dawało nadzieję, że może…może…może za rok będzie jednak lepiej. Rok minął….lepiej nie jest. Teraz trzeba po raz kolejny przechodzić komisję…
Na Zabajce pracujemy ostro, także dzięki waszemu dobremu serduszku i funduszach jakie przeznaczyliście na ochronę zdrowia Lilki.
Mała wyrasta z łóżeczka – powoli musimy rozglądać się za nowym.
Znowu mamy problemy z karmieniem i braniem leków. Lilka zaczęła także wydawać dziwne dźwięki. W naszych oczach nie jest to dźwięk pozytywny – pół godzinny rodzaj ,,zaciągania” powietrza, jakby ktoś przez tubę mówił uuuu. Ciężko wytłumaczyć. Zdarzyło się to już 2x i taka sytuacja trwa około pół godziny. Nie mamy wrażenia, że ona się dusi, ale wykonuje sygnały świadczące o niepokoju. Gdyby ktoś z rodziców miał jakąś podpowiedź (zanim skonsultujemy sytuacje z neurologiem) – bylibyśmy wdzięczni za konktakt.
Videoskopia – kolejny zabieg przed nami. Jeszcze nie wiemy czego mamy się spodziewać.
Mikroskopowa analiza żywej kropli krwi – chcemy się podjąć tego badania, które odbędzie się za 2 dni w Gdyni.
Nadwrażliwość – Wstępna diagnioza u neurologopedy – Lilka ma nadwrażliwość na smaki i dotyk. Każdy smak może być dla niej bólem, nie możemy także jej głaskać. Nasz dotyk musi być pewny i silny.
Trochę nas już boli, ale nie straciliśmy wiary i cierpliwości. Czytamy wpisy innych rodziców, dzieci niepełnosprawnych, gdzie opisują, że ich pociechy w wieku 14 miesięcy same siedziały! Lilik ma już 15 miesięcy i do takich akrobacji jeszcze nam daleko….ba nawet na horyzoncie nie widać, że coś z tego będzie w najbliższym czasie 🙁 Ile jeszcze przed nami, do tego jak mała chociaż usiądzie?
Padaczka – jeszcze siedzimy cicho. Synacthen zabrał ataki i nas ta zła ciotka jeszcze nie odwiedziła! A niech w ogóle nie wraca! Nie lubimy jej i jej tu nie chcemy!
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Strasznie zasmucila mnie wiadomosc o nadwrazliwosci 🙁 sledze Twoje losy Sloneczko i bardzo pragne zeby wszystko co zle od Ciebie ucieklo
Powodzenia dla Lilki 🙂 a dla Was duzo cierpliwosci, sily i wiary! Trzeba byc dobrej mysli 🙂
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