Today we went to a new doc as part of the Newborn Follow-up Clinic, which is now called the Neuro Development Evaluation Program, which is a study of babies that spent time in the NICU (newborn intensive care). Everytime we go, the appt is fine, but the report they send is so depressing that I’m bummed out for at least a couple days. This appointment, I’m sure, will be no different; except that it may be more depressing.
First of all, Maria was weighed and “lengthed” – 24 lb 14 oz (less than the 25 lb 3 oz she’s been weighing since November), and 31″. She’s still at 10-25th percentile for length, 25-50th for weight, and 3% for head circumference — which is low, but at least it seems to be stable, which is what they want.
I liked the doc, she is new here, but seems like she’s been doing this quite a while. Toward the end of the appt, she said she thinks Maria’s at about 6 months old. This is about what I thought and where she’s been for quite some time. She also said that when a kid is getting close to 2 years old and is developmentally less than half that age (Maria is 20 months old, but 6 months developmentally — less than the 10 months that is half her age), then she probably won’t catch up. I don’t know exactly how she said it, but bluntly that’s the bottom line. This won’t change what we’re doing or how we’re doing it. It is, however, the first time anyone has actually said this outloud, which on some level, I guess maybe I appreciate.
The other things she mentioned are that she thinks Maria should get braces for her feet. She wasn’t concerned so much about the angle of her ankles, but rather with how her feet roll in to the middle (not sure if that makes sense). One doc said she could wear them in bed at night, this doc said it’d be better for her to wear them in the stander, for example. She should wear them at times when they will help her (standing), but not at other times, when they would hinder her (crawling). The other thing she focused on was getting some sort of sitting contraption to help Maria with her sitting. She’s worried about her developing scoliosis if she isn’t supporting herself upright with a strong, straight spine. She just said there were many options, but didn’t get specific. Maybe the report will be more specific.
This Friday Maria is finally going to get a brain MRI, a lumbar MRI, and her 3rd hearing test (I forget whether it’s ABR or BAER or what, too lazy to look at the Aug blog to see…). Last year a radiologist was looking at some xrays and thought he saw something not quite right with her spine, like some mild form of spina bifida or something. I’m a little concerned about the tests, but onward we march…
The good news from today is that I talked with an eye doc, whose name I’ve heard a lot because he’s supposed to be really good with special needs kids. Anyway, he’s beginning a study soon on kids with cortical visual impairment and auditory neuropathy. He wants to get them PET scans, which maps the brain in colors that shows which parts are most active and how they respond to different stimuli. Sounds very exciting. I’m quite thrilled that she’s going to be part of it. Plus, one of his offices is only a couple miles from us vs her other eye doc who’s 15 miles or so away. He said to call him back if I don’t hear from him by April 1.
Maria’s vision does seem to continue to improve slowly. The other day she looked at the mobile above her crib for the first time, which got me all excited! Her other developmental milestone is that she now grabs the spoon all the time for every meal. It began one day at one meal, I think when Uncle Andy was here. It’s slow and messy, but a necessary step.