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Stirling

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Stirling blev født 10. december 1996 i Honolulu Hawaii. I sommeren 1996 var jeg gravid med mit første barn. Jeg var meget spændt. Vi fik ultralydet udført 5 måneder sammen, og jeg fandt ud af, at jeg havde en dreng. Hvilket lykkeligt øjeblik for os! Men teknikeren handlede underligt og bad om, at en Dr. skulle se på selve billederne. De sagde, at de gerne ville have, at jeg kom tilbage til et nyt kig om et par uger. Jeg blev bekymret og kunne ikke forestille mig, hvad de så. Da jeg kom tilbage, sagde de, at væskesækken i hovedet på min baby så stor ud, og at de gerne ville planlægge en fostervandsprøve. Vi udførte testen 7 måneder sammen og ventede på, hvad der syntes evigt for testresultaterne. Det viser sig, at min prøve skulle sendes til USA, fordi der ikke kunne bestemmes nogen resultater her på Hawaii. Til sidst fik jeg at vide, at min søn havde Pallister Killian-syndrom. Jeg fik at vide, at det var meget sjældent, og at de fleste babyer stadig blev født eller døde inden for deres første leveår, og jeg fik muligheden for sen abort. Vi blev ødelagt over nyhederne og diskuterede det noget. Vi besluttede, at hvis denne lille fyr ville leve, ville vi give ham enhver mulighed for at gøre det, og at vi ville elske ham, uanset hvad.

Så når tiden kom, havde vi omkring 10 læger og en kapellan på mit fødestue og ventede på at se denne meget usædvanlige baby blive født og give om nødvendigt sidste ritual. Det var meget deprimerende må jeg sige. Jeg var slet ikke glad. Efter 26 timers arbejde kom min lyse baby dreng til verden, men jeg kunne ikke se ham. De tog ham straks væk. Jeg fik flere timer senere besked om, at han havde levet. Gud er god! Et par dage senere fik jeg endelig se ham i PICU. Han var under en hætte, fordi han var gulsot og blev fodret med rør. Han levede! Han lignede meget et PKS-barn, hans øjne var store fra hinanden og hans hud var gennemsigtig. Hans ben og arme var meget korte, og han havde et hul, hvor halebenet var, men han var min, og jeg græd første gang, jeg holdt ham. Han var så lys, at jeg kaldte ham Stirling. Så sætter vores rejse.

Stirling har for det meste haft en sund sund barndom. Han blev diagnosticeret som kortikalblind i en alder af 1 år. Det ser ud til at komme og gå, så han bærer også briller. Det blev bestemt, at han var døv ved fødslen, men siden det er bestemt, kan han høre høje lyde og høje tonehøjder og har brugt et cochlear høreapparat. Han tyggede aldrig sin mad, så al hans mad blev altid pureret. Han er inkontinent den dag i dag. Han begyndte at få krampeanfald i en alder af 3. Han forskyder sine hofter. Han gør den "froggy" ting. Jeg tror, ​​han kan lide det! Så han har haft to operationer at reparere, men de varede ikke, så vi har givet op. De er ikke smerten værd, hvis han ikke er generet af dem. Han laver også ballerina-tingene med fødderne, så han har også haft to operationer for at forlænge sine akillessener for at hjælpe med at stå. Han har haft mange øreinfektioner, fordi hans ørekanaler er meget små og har fået rør i hvert par år. Han har haft vidunderlige lærere og lærerstøtter gennem årene. Han har altid været en glad dreng. I sine teenageår har han haft en række lungebetændelser, en trakeotomi, et G-rør, og han har været på ilt.

Han er blevet medicinsk skrøbelig, men han smiler altid og ved godt humør. Han er elsket, og han ved det! Han har 2 brødre i alderen 13 og 11 og en babysøster i alderen 2 år, som han fortæller, hvem der er chef på regelmæssige baser. Han er trods alt storebror.

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