The image above was taken prior to Ada’s severely debilitating regression she had at 4.5 years of age. Regression is common in Phelan-McDermid Syndrome and is often related to seizure activity. Ada’s regression brought the onset of PICA so many of Ada’s fave activities including jewelry play are now VERY tricky. We used to take quite a bit for granted, such as little moments captured above that we look back and cherish now. As the years go on PMS truly teaches us to savor the joy in every moment.
March 4, 2017
Upon reflection last nights scare…it happened right after music therapy ended and Ada was playing in her and Willa’s rooms for a few minutes on her own. When she emerged from the bedroom area into the living room her tongue was hanging out as she slobbered quite a bit. She seemed slightly uncomfortable but not terribly so… but these signs indicated a possible vaso vagal response or had she just swallowed something dangerous? (Many kids with PMS including Ada have PICA) so we went into figure out the mystery and triage mode. Is it GI related!?? Willa without asking ran to her room saying she needed to check her one toy to see if any pieces were missing! My heart. We thought maybe she was overly hungry maybe blood sugar drop so tried feeding and that’s when her tongue turned white and she acted as if she would throw up. The crying started and as I held her she burped a few times each time followed by a distinct jerk of her entire body which frightened her. It was sad. As Jon took a turn trying to calm her we decided to go to the er…he took her to get clothes on as we had stripped her down earlier afraid she was overheating (she doesn’t sweat) she cried even harder but then suddenly calmed. We think something was lodged somewhere and dislodged itself . The mixture of gi issues, pica, vasovagal, hypotonia, non verbal, seizures… Sometimes all catches up with us, hits us in the face and leaves us learning to let go of the whys and hows but holding each other closer! Not gonna lie I freaked out and I’m so lucky Jon is the dad and husband he is!
#ThisIsUs#ThisIsPMS #PhelanLucky #PhelanMcDermidSyndrome #fairystrong