mistery boy

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HELLO EVERYONE

MY SON WAS BORN THE 3/3/16. MY SON IS 6 MONTHS OLD ALMOST 7MONTHS OLD HE HAS MICROCEPHALY,  LARYNGOMALICA, DANCING EYES, VOCAL CORD PALSY, BRAIN ATROPHY, PRS (PIERRE ROBIN SEQUENCE) AND A HIGH PALATE, SLEEP APNEA, BREATHING PROBLEMS.

MY SONS HEAD IS ONLY READING AT 38CM ALL THE TESTS HAVE CAME BACK CLEAR HE DOES PHYSIO WEEKLY AS HE CANT ROLL AROUND OR ANYTHING ELSE REALLY. THERE IS TALK HE MIGHT END UP WHEELCHAIR BOUNDED AS HE GETS OLDER WE HAVE ONLY JUST TRIED HIM ON SOLID FOOD IN THE PAST WEEK AS MOST OF IT GOES TO HIS LUNGS HE SCREAMS IN PAIN 24/7 MY PARTNER AND I DO SHIFT SLEEP  AS WE HAVE OTHER CHILDREN WE CARE FOR.

HIS HEAD IS ALWAYS DOWN SO HIS CHIN REST ON HIS CHEST BONE EVERY NOW AND THEN HE WILL LIFT IT BUT ITS ONLY VERY SHORT AMOUNT OF TIME.

WE SPEND ALOT OF TIME IN AND OUT OF HOSPITAL AS WE ARE IN TASMANIA A SMALL ISLAND OFF AUSTRALIA AND WE DONT HAVE THE FUNDS OR QUALIFIED DOCTORS WHO KNOW MUCH ABOUT OUR SONS CONDITION WE HAVE HAD ALOT OF DOCTORS CALL OUR SON MYSTERY BOY BECAUSE THEY VERY RARELY SEEN OR HEAR OF A CASE LIKE OUR SONS.

AS THERE IS AN UPSIDE TO OUR SON AS HE WAS BORN LIKE THIS SO HE SMILES ALOT HE MAKES LITTLE GOOING AND GARING SOUNDS AND BEST OF ALL HE GIGGLES EVERY TIME WE TALK TO HIM ABOUT FOOD.
Thank you for taking your time to read a little bit about our son