When Beckett came home from the hospital on June 16, he was still being fed with an NG tube. His last week in the NICU, he was assessed by an occupational therapist (OT) to help progress his oral feeding skill. The OT’s first assessment was very brief. Beckett didn’t open his mouth when a soother was placed on his lips and he didn’t suck on a gloved finger when put in his mouth. The OT said he didn’t have a rooting reflex, and said that was all she’d do for now but would come back the next day. I remember feeling so discouraged after that initial meeting, because I felt like the conclusion reached was that he didn’t have a reflex that was required in order for him to learn to eat. I saw a future of tube feeding Beckett, blending everything into liquid form for the rest of our lives. I will say off the bat, that this did not turn out to be our reality, and I’m very grateful, but also that if it had turned out that way, we would have made it work as a family. It just would have really su
This blog is intended to provide information and updates on Beckett’s (and our) journey with hypoxic ischemic encephalopathy (HIE), Cerebral Palsy (CP), and Currarino’s Syndrome and how we are doing as a family of three. More than that it is also a way for us, Beckett’s parents, to share and process what we’ve been through as a family.