Hearing

I was too late to get it with the camera, but when I went into the nursery yesterday, the boys were holding hands! (It was just for a few seconds, since what they were actually doing was grabbing each other's sleeves. But it was still very sweet!) They seem to like being in the crib together, at least to the extent that they notice. They both smile at each other, occasionally even at the same time. Now that James isn't throwing up during the night, we've been putting them in the same crib to sleep, but separated somewhat so they don't kick each other. Mattie still gets up at least once during the night to eat, but it doesn't seem to disturb James -- and vice versa, if James is fussy it doesn't usually seem to bother Matthew.

We had our second session with the auditory-verbal therapist yesterday, and it went really well. She brought along some toys, and did a little testing to see what sounds James might be reacting to. The same toys will also be used for playing, to teach the association between different sounds and objects. I was holding him, and she made the sounds behind his head at a fairly close distance, about three feet away. He definitely seemed to respond to the toy drum, and when the toys accidentally fell on the ground. He also responded to one of the musical toys. The other musical toy he didn't seem to respond to when it was far away, but seemed to notice it when it was closer. At this age, they aren't turning towards sounds yet, so I was watching for cues like raising his eyebrows, widening his eyes, or moving his eyes in the direction of the sound. He didn't respond at all as far as I could tell to her making shh noises, but I'm not sure if that's because he didn't hear her or because he was starting to fall asleep by that point. (There may have been another toy he didn't respond to as well, but I can't remember for sure at this point.) So, the session seemed consistent with our impressions that he's hearing some things but probably not hearing others.

We asked about the idea of fluctuating hearing, that he might be hearing better at some times than others, and she said that in her experience and with the group at UNC, they haven't really seen that with auditory neuropathy. (Perhaps it's just that infants don't necessarily respond consistently to sounds at this age; we've certainly seen that with Matthew.)

The therapist also emphasized the idea of talking close (which means in a three-foot radius) and quiet to him (rather than yelling), and she mentioned that when or if he gets hearing aids, they have FM technology so that the parent (or whoever) can wear a microphone, and it transmits to the baby's hearing aids. That was really good to hear, because one of the things that worried me about hearing loss was being able to get his attention when he's at a distance (for instance, once he starts walking, if he's heading toward something dangerous). Of course, little kids don't always listen under the best of circumstances, but at least that would give us a chance!

Later that evening, James was napping in his bouncy seat. I was sitting nearby playing with Matthew, and when Matthew started fussing, I said, "Do you want a paci?" It was most likely coincidence (since he was already starting to stir a bit), but James opened his eyes at that sentence!

We had a meeting today with the person from Beginnings, the support organization for families of kids with hearing loss. They do everything from helping to coordinate services to providing emotional support to parents; it seems like a fantastic resource. The person who met with us has a deaf son, so she's been through this kind of journey herself (even more so, since her son had some additional challenges as well). On the one hand, it was good to have the information and she was very warm and supportive, but on the other hand, thinking about a future of constant therapies and accommodations and struggles is depressing and exhausting. I don't do that much because we really have no idea what the future will hold, so one day at a time is enough for now.

One thing that made me a little sad at the meeting was that she had an audiogram chart, which shows the decibel levels for common sounds. A dog barking is in the 70-80 db range, according to these charts, and hearing (only) at that level or above would be classified as severe hearing loss. I've seen James react to Stanley barking several times, and that's always seemed encouraging, but somehow still having that potential label of severe loss came as a surprise. Now, obviously there's no diagnosis yet and it's quite possible he can hear more than that (and even if he does have severe loss there are treatment options with hearing aids or implants), but it was an unhappy thought.

On a brighter note, James has had a great couple days with his bottles; he had several 50 ml bottles yesterday, and a total of about 400 ml during the day. We're off to a slower start today, but that's okay. He's gaining weight; he was about 12 lbs, 4 oz on the home nurse's scale. And he's been giving us the most adorable smiles!

I thought babies were supposed to have short attention spans, but Matthew was playing with a caterpillar on his activity gym for probably a half hour yesterday evening. It was hilarious, because he could pull it almost far enough to get into his mouth, but not quite -- I could tell he really wanted to get it! He also grabbed his foot last night on the changing table -- apparently discovering their feet is one of the four-month milestones.