Practically Normal

The GI doctor called first thing this morning with James's blood results, and he was very pleased -- James's direct bilirubin is down to .6, which as the doctor said is "practically normal." (The normal range is 0 to 0.3.) His other liver enzymes looked good as well. Hooray!! Everyone had been saying how good James's color looked, so we thought we might be getting good news (but didn't want to get our hopes up). It was a nice way to start the day!

This afternoon the teacher from the hearing Early Intervention program came to the house. (The plan is that we'll be seeing her twice a month while James is still little, and then more frequently as he gets older -- after about six months adjusted age.) There are several different approaches to teaching communication to kids with hearing loss or deafness, and this person uses the Auditory-Verbal approach.

Apparently we're doing things in a slightly unusual order. There are two Early Intervention programs for hearing loss. One provides teaching for parents and kids, and the other, called Beginnings, is more of a support program to make sure families are aware of the resources available and are connected to the appropriate agencies and so on. Part of the Beginnings program is explaining all the different approaches to communication teaching, so that parents can make a more informed decision about how to proceed (for example, focusing on sign language versus speech). But we're not meeting with the person from Beginnings until next week, so we don't know much about the different options yet -- though we get the sense that people feel very strongly about the one they choose! Usually this meeting takes place before a referral to a teacher. But that's okay; I think we'll be happy with the current person, and if we decide an alternative approach would be more helpful for James, I'm sure we can switch.

The first part of the meeting was her getting a sense of where James is developmentally (by asking us questions about what kinds of things he's doing or not doing) and auditorially (I'm not sure if this is actually a word, but you know what I mean). Our impression was that she was very encouraged by the kinds of things he was doing and the fact that he does seem to be responding to some sounds. And her experience has been that more often than not, kids with auditory neuropathy do well with hearing aids. It was nice to hear that from someone with actual experience working with kids with this condition.

As we understand it, the goal of Auditory-Verbal approach at this stage is to help James pay attention to sounds. So, we're supposed to pay attention to when he seems to be responding to sound, and draw his attention to it by pointing to our ear, making an excited face, and saying, "You heard that!" We're also supposed to talk to him as much as we can in a regular voice, but close to his ear. This makes it more likely for him to hear what we're saying, but doesn't distort sounds as much as raised voices do -- and of course, it's also a much more natural way to talk to a baby! As the weeks go on, she's going to be giving us additional exercises to do. She's also going to be doing some evaluation herself of how much James is hearing or not, and is going to do some activities with him that will help prepare him for the more formal behavioral hearing test. (Her overall goal will be to have him at an appropriate age level with language by the time he turns three, when the Infant-Toddler program ends. If needed, he'd transition to the next level of EI program after that.)

I don't think I fully understand the basis of the A-V approach yet (and I'd be interested to see what the research says about it), but it seems like a reasonable starting point.

For feeding, we tried the "bottles during the day" approach. He did several 20 ml bottles, which isn't as good as he'd been doing over the weekend. However, he was alert and happy a lot today -- he wasn't dealing with as much digestive discomfort. We'll see tonight whether we can give him enough food overnight to make up for the lighter meals during the day.