MJ

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Michael Joseph Bentley "MJ" blev født den 29. marts 2011 til stolte forældre Nanci og Michael Bentley. MJ blev født 2 uger tidligt af c-sektion og var £ 8 ounce. MJ havde ikke mange komplikationer.
Inden for 5 dage blev vi sendt hjem for at starte vores rejse som familie. Vi vidste ikke, at MJ ville blive diagnosticeret med PKS ved 5 måneder gammel.
Vi havde flere indikatorer, der fik os til at udføre genetisk test. MJ havde grå stær i det ene øje og syntes at have lav muskeltonus. Kirurgi blev udført 4 måneder for at fjerne grå stær, og så begyndte han at bære en kontakt i øjet. MJ bærer stadig sin kontakt (når han ikke gnider den ud). Når MJ blev diagnosticeret, kunne vi få kontakt med andre familier og specialister for at sætte os i den retning, vi havde brug for at gå. Tidlig intervention begyndte. Vi havde så meget støtte fra fantastiske familie og venner, der aldrig behandlede os anderledes. De kom bare sammen og hjalp, hvor det var nødvendigt. Siden den tid fortsætter vi med at opbygge vores viden for at sikre, at MJ modtager alt, hvad han har brug for for at maksimere sin udvikling med stadig at lade ham være barn! Lad aldrig nogen sten være upåvirket og tal for det, du tror! Det er det, der får os til at bevæge os fremad. Vi har også et fremragende team af læger og terapeuter, som vi kalder "Dream Team". Dette har været en rejse, som ingen af ​​os nogensinde troede, at vi ville opleve, men det er det bedste, der nogensinde er sket med os. Vi er heldige at være blevet valgt af MJ til at være hans forældre. Han har lært os så mange ting, at vi kun ønsker andre får oplevelse. Han har gjort os stærkere, tålmodige, medfølende, besluttsomme, taknemmelige, modige og mest ydmyge. Han har et smil, der tager vejret fra dig og kærlighed, der får dig til at smelte. Vi ser på de små ting som store ting ..... MJ elsker musik, lys, snuggling, loftsventilatorer, tæpper, puder, svingende, udendørs, svømning, slæde, jordnøddesmør og gelé, grønne bønner, kig en boo og så meget mere. MJ fylder 3 år i år og bruger en rullator og arbejder på at sidde op uafhængigt. Han lærer også nogle underskrifter med den hjælpende teknologi på plads. Han modtager også vision-, OT- og vandterapitjenester. MJ deltager også i et dagprogram 3 dage om ugen, som han elsker.
Vi er taknemmelige for PKS-familien, vores familier, venner og alle, der har støttet os under vores fantastiske rejse, at det har været hidtil .......
MJ er en "skinnende stjerne"!