March 3, 2017
Currently reeling after a very mysterious sobbing episode in which Ada lost functioning, went limp, acting like she was going to throw up but didn’t. She never cries so this was very alarming and we were toying with going to the emergency room. She’s calm now but still not her norm. Her and Wills (her 6 year old sis who identifies as an elf) are chilling watching #SesameStreet which Ada only tolerates television when she’s sick so I’m glad it’s calming her but just shows how out of it she is. I don’t know what the hell just happened but I do know buttered Dino noodles are soothing ME. And she’s now giggling with Jon (the girls dad and my hubs)!!! Ahhh PMS is full of very crazy twists and turns.
Earlier this afternoon in fairyland Ada turned our table into a climber. Every few months she does this. Today’s adventure was great considering her lack of spacial and safety awareness, muscle tone, bilateral functioning, and confidence. Her moves were very slow, thoughtful and purposeful. Her poses were adorable while she displayed tons of wonderful moments of weight bearing with both upper extremities, motor planing, problem solving, and even snuck in some tummy time. She was using both hands and not in her mouth at all! As she was about to dismount she noticed baby sis (Oona) and proceeded to share the sweetness with appropriate social emotional skills! Kisses and beautiful touches using such gentle force! This is huge for Ada! And kisses were lost from her life for years and it’s just beyond precious seeing her expressing herself in this way again. She ended the climbing session celebrating with Wilzy;) #riseabove #climb #sisterhood #seizures #choking #hypotonia #grossmotor
#ThisIsUs #ThisIsPMS #PhelanLucky #PhelanMcDermidSyndrome#RideTheWave #fairystrong
March 3, 2017