Ok, feeling overwhelmed and just need to vent. Took our 14 mo ex 32 wker with hydrocephalus to her 12 month NICU follow-up today. She had some stunting in the development of her corpus callosum 2/2 the hydrocephalus, but otherwise structurally brain looks ok. First off, I wish someone would have told me it was a 4 hour endeavor - we missed lunch and nap time... both of us were hangry! That aside...
We've know for months now she has some motor asymmetry and delays (only pulls up with her right side, increased tone in her BLEs) and have been working with PT biweekly for 3 months now. Everyone (me, dad, daycare teachers and her PT) all seemed to think she was making strides if not almost caught up. Today the NICU recommended more intensive PT, at least weekly. My reaction: exhaustion.
And brand new today is an apparent receptive speech delay. This one really caught me off guard. She had maybe 10-15 words at home, including kitty cat, cup, ball, mama, dada, dog, milk, no, hi, bye... probably a few more. She only said "hi" and "uck" (instead of duck) for them and otherwise just babbled. Her teachers at daycare last week told me they felt she was ahead of the other kids on the room (ranging 12-18mo) in her speech as she used words and sign language to ask for things rather than just grunting for attention. But as of today's appointment, we are "way below" expected levels and have been recommended for weekly speech or OT. They couldn't even really tell me if they were recommending Speech vs OT.
I have a theory on this whole thing, but perhaps I'm being short sighted. I think they are anchoring to her having hearing issues. Another long story, but when it came time for her NICU hearing testing follow-up, they were full and had to schedule her 2 months after the ideal age. At that point, she was babbling and phonating constantly, so they couldn't test her "soft sounds." At 12 months, we were getting sedation for a surveillance MRI anyway, so we decided to do the hearing testing while she was under. The ENT wanted us to consent to putting bilateral eustacian tubes in if there were any effusions so they could complete the test. Neither my husband or I would consent to a surgical procedure to complete a screening test for something we had no specific concerns about. Plus, this was February, and we had all had colds all winter. So, her hearing testing remains incomplete and she's labeled as having some kind of conduction loss, even though we have no concerns and she's never completed testing. We see ENT again in June when hopefully flu season will finally be over.
So, my sense if that they might be anchoring to this "hearing loss" as a cause for receptive speech difficulty. Obviously I can't say for sure that she doesn't have any hearing loss since we haven't completed all the tests, but I've never had any concerns. I just don't know what to do with this "expert recommendation" by a team that saw her once in 6 months for 2-3 hours total, vs myself, her dad, her teachers and her Pediatrician. I contacted our EI coordinator to set up weekly speech as well as bump the PT to weekly, but I'm really frustrated and not sure what to do with all this new information.