Jake

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Jake blev født den 13. september 2003. Jeg havde en normal, sund graviditet, og vi vidste ikke, at der var et problem før morgenen efter Jake blev født. Oprindeligt bemærkede børnelægen hans store fontanelle (blød plet), og hun troede, at han havde en kløft i ganen. Der endte med at være mange flere fysiske anomalier ud over fodringsproblemer, og han blev overført uden mig til et andet hospital, hvor han tilbragte de næste 18 dage i NICU. Han blev stukket og stødt og testet for forskellige syndromer. Vi blev løsladt fra hospitalet uden diagnose, når han først begyndte at tage på i vægt og spise alene. Vi fik at vide, at der bestemt er "noget galt" ... lægerne vidste bare ikke hvad. Det ukendte var det værste.

6 måneder gammel troede vi, at Jake begyndte at få krampeanfald, og dette blev “det sidste stykke af puslespillet”. Jakes genetiker huskede at have læst noget om Pallister-Killian syndrom (PKS) og krampeanfald, og han besluttede at lave en hudbiopsi. Det er overflødigt at sige, at inden for to uger havde vi vores diagnose.

Jake er globalt forsinket. Han har høre- og synshandicap. Han fik hans første sæt høreapparater, da han var 3 måneder gammel, og hans første par briller, da han var 2 ½ år gammel. Han er ikke-verbal, men vil inkonsekvent underskrive for mere, spise og drikke. Han er ikke-ambulerende, men han elsker at sparke og rulle fra side til side. Jake har anfald og har for nylig lider af tilbagesvaling og apniske / anfaldsepisoder ud af søvn med betydelige de-mætninger i hans ilt. På trods af disse episoder er han mere opmærksom, lykkeligere og mere lydhør end nogensinde! Han elsker kys, kildninger, at være sammen med familien og selvfølgelig sit vibrerende slangelegetøj.

Mike og jeg har bare lyst til de heldigste forældre i verden, der er velsignet med en engel på jorden! Jake er her af en grund. Vi ser det hele tiden - han skifter mennesker. Folk hører hans historie og ser, hvad han gennemgår hver eneste dag, og det hjælper med at sætte tingene i perspektiv. Jake udstråler simpelthen "PURE UBETINGELSESKÆRLIGHED" i enhver forstand af sætningen. Tårerne af bekymring og fortvivlelse, da han tilbragte sine første uger i NICU, er forvandlet til konstant tårer af glæde, som vi nu deler med et udvidet netværk af familie og venner. Jakes 4-årige bror og søster (Brandon og Kayla) venter bare på, at Jake ”bliver stor som dem” J. De elsker ham i stykker!

Jeg elsker Jake af hele mit hjerte og ved bare, at der er uendelige muligheder for ham. Der er så meget mere, som han vil opnå - det vil bare være på hans vilkår i hans eget tempo!

For at lære mere om Jake, besøg hans websted på www.jakezane13.com

- Nicole Zane (Jakes mor)