Today's News

Lydia is still eating pretty well....no less than 3 oz at each feeding. Teresa came today (OT) and we discussed the issue of the feeding tube at length. She gave me some more issues to consider when making our decision...some things I hadn't thought about. We talked about how Lydia is just making it (on some days) with the nutrition that she gets solely from formula...(The amount of baby food that she is taking in is not enough to sustain her at all...I am basically continuing to do it to give her more practice with it so that she will hopefully get better and better at spoon-feeding so that it will provide a greater percentage of her nutrition...right now, there is basically no nutritional value to what she is getting by spoon..she just doesn't eat enough of it.) Anyhow...we talked about what will happen when we wean her from the bottle (which will probably be some time later than a typical child who weans at 12 mos....maybe 15-18 mos.) Will she be able to sustain her nutrition with spoon-feeding/table-feeding and liquids by cup? Good question. A question that we don't know the answer to right now, of course. But, one would predict that she will probably have some difficulties in that area. That would lead us to believe that what Dr Wood said is true...it is inevitable. That being true, it still doesn't make me want to go out and do it this instant when she is still feeding well. I am absolutely ready to do it when I see that she is having a decline...if and when that happens again. Teresa suggested that we go along with the plan as it stands....pharyngogram, follow-up with Alberty, and see the surgeon. We could have everything "on go" so that if (and when) she starts to refuse feeding, we can just make one call and schedule the procedure. I think that is a good plan. I stressed to her how I feel uneasy about the decision being left up to me...If a doctor would say, "Lydia needs a feeding tube...let's schedule it," it would make me feel more comfortable about it. I know I said just a few days ago that I was solid about my decision....I guess you can tell that is not true anymore. We'll get there...

An episode last night:
Lydia was in the living room with Martin when I went to take a bath last night. She had fallen asleep on a pillow. Martin noticed her to have what appeared to be an infantile spasm. He said it looked like a startle...just like the other spasms, but he said it was bigger arm movement than before. It happened 7 times....about 15 seconds apart. The difference between this and the spasms we saw before: she was sleeping, and she fell asleep between each jerk. Dr Hollman had told us that babies don't usually have infantile spasms in their sleep. When I came in and picked her up from him..I noticed that she had diarrhea...that lead us to wonder if maybe she was having stomach pains that caused a startle reflex with each cramp...but, she wasn't crying- that would be odd if she had pain that startled her so much. Another twist: When we saw Dr Schoffner in Atlanta, he said that he had never seen a baby with a normal EEG to have infantile spasms...so, he didn't think that her episodes were infantile spasms...he said he preferred to call them "arm jerks." He also said that the movement we described was not consistent with infantile spasms. I called Dr Hollman's office this morning to talk to her about it, but she was out until next Tuesday....so, I talked to another dr's nurse...Dr Golden said to watch Lydia and let them know if it happened again because they would want to do an EEG. If it happens again, I'll probably call Dr Hollman's cell phone to let her know.