Phillip

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Phillip blev født den 18. august 2017. Jeg havde ingen komplikationer under graviditeten, og alle vores ultralyd var store så langt som vækst og udvikling uden røde flag, der tyder på noget andet. Når han blev født, tog det lidt tid at trække vejret, og han havde ingen interesse i at fodre, så sygeplejerskerne tog ham til NICU for at kontrollere blodsukkerniveauet. Hans blodsukker var lavt, så han blev optaget på NICU og startede på en IV, men havde stadig ingen interesse i at fodre, så de startede fodring med et NG-rør.
Under dette NICU-ophold talte lægerne til os om hans “grove” ansigtsegenskaber, høj buet gane, læbestift, supernumerære brystvorter, sakral hul og sparsomt hår. De udtrykte, at funktionerne på egen hånd ikke var noget at bekymre sig om, men med alle disse sammen ønskede de at lave nogle yderligere test.
Mens vi ventede på resultaterne af disse tests, havde han startet oral foder med en flaske og begyndte at tage på i vægt. Der var også flere ultralyd, der kom fint tilbage, og flere høringsundersøgelser, som han ikke passerede til. Der var gået 2 uger, og vi fik endelig en diagnose af PKS, som var en slags lettelse, fordi de var ude af mørket og kunne se dette hoved på.
Kort efter vi bragte ham hjem kom NG-røret ud, og vi fik bolden til at rulle med tidlig indgriben. Han er i øjeblikket 7 måneder, og selvom han ikke har meget hovedkontrol, fortsætter han med at blive stærkere og ruller på sin side og elsker at sparke. Han har forbedret sig socialt med smil, skrig og cooing, men viser ikke meget interesse for legetøj.
Phillip havde lige sat ørerør på plads, og hans læbe og tunge blev klippet. Vi arbejder stadig på at finde ud af omfanget og årsagen til hans høretab og holder øje med hans syn, da han har et drivende øje med noget Nystagmus.
Alt undtagen er han en sund og tilfreds baby dreng. Han har lært os som forældre, hvor virkelig ubetinget vores kærlighed er. Vores familie og venner har været yderst støttende, hvilket har gjort denne oplevelse meget lettere.
Vi vil leve i øjeblikket og huske, at vores gode dage altid opvejer de dårlige dage. Phillip vil vide og forstå, at han så elskede og ville have.
PKS Kids var den allerførste og har været den eneste ressource, der har vist sig nyttig. Vi er altid taknemmelige og ser frem til den kommende konference.

Hvis andre forældre eller familiemedlemmer gerne vil kontakte os og lære mere om vores rejse, kan du e-maile mig på ashleypaleo@gmail.com