AFTER ETHAN WAS HOME WE STARTED GETTING SETTLED INTO OUR NEW LIFE, FIGURING OUT HOW TO WORK AROUND HIS OXYGEN AND FEEDING TUBES WITH OUT GETTING TANGLED OR THE DOGS TRIPPING OVER THEM, HOW TO SCHEDULE THE INSANE AMOUNT OF DR. APPTS. WE HAD ALONG WITH THE IN HOME NURSE AND THE IN HOME OCCUPATIONAL THERAPY SESSIONS.
WE STARTED TO GET INTO ROUTINE AND TO FIND WHAT WAS EASIEST FOR US AND WHAT WAS BEST FOR ETHAN. ETHAN BROUGHT SO MUCH JOY TO OUR HOUSE WE FELT COMPLETE AND JUST SO LUCKY TO HAVE HIM HOME.
FOR THOSE THAT AREN'T FIMILAR PWS IS A GENTIC SYNDROME THAT COMES WITH A LOT OF CHALLENGES ALONG THE WAY, HERE ARE A FEW:
* LOW MUSCLE TONE
* FAILURE TO THRIEVE
* TROUBLE SUCKING/EATING DURING INFANCY
*DELAYS IN MOTOR SKILLS, WALKING, TALKING, LEARNING.
* LOW TO MODERATE MENTAL RETARDATION
* ONCE OUT OF INFANT/TODDLER STAGE NOT HAVING THE ABILITY TO FEEL FULL WHICH CAN LEAD TO OVER EATING, AND SOME CASES OBESITY OR DEATH.
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