Nolan is quite the nature boy these days. This is mildly surprising, since he used to have a very strong fear of plants. He has been spending quite a bit of time on the edge of the woods, searching for newts and frogs - though he's a bit nervous about venturing deeper into the forest. That suits me just fine - a little healthy caution is never a bad thing!
He came home from school this morning with one "dead" hearing aid - his battery died at preschool. I asked him why he didn't tell his teacher (she has extra batteries), and he simply said, "I don't care if I can't hear with one ear." Sigh....
I'm going to start replacing his batteries every five days to prevent the batteries from dying on him during class. They used to last about 8 days (without the FM system running). With the FM system in school, the batteries last about six days. I figure if I change them every five days, then we should be able to avoid any problems during the school day.
I also found out that Nolan is changing his hearing aid program. He came home from preschool the other day and it was set to the regular hearing aid program (not FM). I told him to leave his program buttons alone, and he said, "I don't want to listen to my teacher all the time."
I think I have found his super power - he really does have the power of selective hearing! Stinker.
We went to the sleep center today, and he had his actual appointment. His lungs sound a little junky, but nothing too serious. The back of his throat looks good, and his weight is fine. I was relieved when the sleep center doc told us that 4-6 hours per night was absolutely fine for C-Pap use. Nolan may never get in a full night's sleep with the C-Pap, but most growth hormone is secreted during the first 4 hours of sleep. If he gets "quality" sleep during those first four hours, then that is "good enough." He is still very fatigued and has a hoarse voice- that is what we will live with since he has such severe reflux.
I did ask about getting a full-face mask, and he recommended against using one. Apparently, a lot of little kids are "aerophagic" (seriously, I learn a new word every day with this kid). If a full-face mask is used, Nolan could swallow air all night long and end up vomiting into the mask. Or he could just end up belching a lot with a distended stomach. On the other hand, he can't really use the nasal mask when he is congested. And with the airway reflux, he is congested all. the. time.
The respiratory therapist called me and said she does have a sample of the full-face mask in stock. We could try it - if he is "aerophagic," then we'll know right away. If not, then it may be a good solution for him. I'm happy they have one in stock - it lets us try before we buy. I'll pick it up tomorrow when both boys are at school.
Next week is entirely doctor free, so we are going to enjoy the down-time!
7 comments:
I'm cracking up at Nolan turning the FM off. Tate did the same thing sometimes! Or the whole HA...
I distinctly remember him looking me in the eye very defiantly, as I was reprimanding him about something or other and snapping his HA's off, with a flourish.
But turning the FM off may be teacher-related. Can she turn the microphone on and off from her end? And does she? Or does she leave it on, all day long?
Tate would get understandably irritated when the teacher left her end of the FM on unnecessarily. She needs it on when she's giving direction to the whole class (or whole-class discussion) or if she's talking directly to Nolan.
But she may be leaving it on all day, and that's not good. You DON'T want it on when he's working independently, or playing with a group of kids, and suddenly her voice is piped into his ear as she talks to someone else. Her voice will be louder than the kids around him, and how distracting! Even if it's on (when it's unnecessary) and she's not talking, it's piping more background noise into his HA's that overrides the noises nearest him.
Make sense?
Tate's teachers inadvertently wore the FM, turned on, into the bathroom, the teacher's lounge, etc.
You might ask him why he's turning it off, or when he doesn't want to listen to the teacher.
Julie
Long comment! Sorry!
That's a good point, Julie... his teacher is great and I did show her the mute function, so I don't *think* she is leaving it on inadvertently.. but it is a good thing to think about. He did leave it on yesterday - I do think he gets a bit of listening fatigue. The day he had snapped it off was the day he had the "X-Cel" program at our local Christian preschool in the afternoon. He's not going there everyday, but he is going there on Monday and Friday afternoons, and that might be a little much for his four-year-old ears and brain to take. I'll have to see how it goes (I really love the programs at that preschool, but if it is too much, then we'll pull him out). I always give things a month to see where they settle, though!
He's a hoot! KayTar just hears with one ear and it works well enough for her...but if we could do better than that we would! So funny about him changing his buttons to tune his teacher out...starts early! ;)
Do you ever give him Benadryl and/or ibuprofen at bed? We do Benadryl with KayTar many nights for congestion (whether reflux related or otherwise) and ibuprofen can bring down inflammation (even in the sinuses), so that might help the nose mask work better for him?
Kyla, that's a pretty good idea...
We have a full-face mask that I just picked up today, and it seems to be the best thing - I'll make a post on it tomorrow. If he starts swallowing air, though, then we'll go back to the nasal mask and try the ibuprofen and the benadryl. We had avoided benadryl for a long time because he had severe central apnea, but that seems to be resolving with time (thank goodness)!
This is so funny ! Am sure its tiring to keep listening to the teacher and they love to fiddle with their HA all the time.Prisha too did it when she was little and was tried of all the loud sounds around her.Some days its too much to keep so attentive I guess, so a bit of "rest" must be great....lol !And enjoy the doc-free week Leah , you so deserve it.
Oh my gosh, I love that he said he doesn't care if he only hears out of one ear. It's so comforting to hear that sort of thing come out of another kid! Thanks for the posts about the working of the FM system. I have a feeling we are going in that direction before too long.
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