Day 34 - wow, it's been over 1 month since we started this wean. Part of me feels like we are slowly drowning but our rescue will be coming soon and another part of me feels like we are not drowning at all we are simply learning how to swim.
I have done a lot of thinking lately about Allie not enjoying food and simply just being not interested in food. For 3 years, I have watched and studied her every move when it comes to eating orally. I have watched how she takes 2-3 bites and then simply announces she's done eating. I have watched her tell me she's hungry but then when we put food in front of her, she's not interested. I have watched her eat a whole hot dog at times with no problems at all. I have watched her drink the majority of her calories and the next week not drink anything. There is absolutely no rhyme or reason in regards to Allie's eating habits. But, the more I watch her and study her, I'm almost 100% convinced she doesn't feel the "hunger" sensation.
When you or I feel "hungry" and we don't have access for food immediately, we feel different. We may get shaky, upset, irritable, tired, get a headache, etc. Then, when we satisfy our hunger, we feel back to normal again and we continue on our day. If we don't consume enough calories throughout the day, we feel tired and sluggish at the end of the day or throughout the day. One thing I have noticed about Allie this past month is that no matter how little calories she consumes each day, her energy level and behavior is consistent. Allie has not slowed down even 1 notch since consuming very few calories. She sleeps the same amount of time during the nigh and during nap time (actually her naps are now shorter) and her energy level while awake is still 100% full force ahead. Allie's behavior never changes when she does or doesn't eat. It seems as if food doesn't affect her at all. Kind of like she doesn't need food for energy. It's a very strange concept and if I wasn't witnessing all of this with my own eyes, I probably won't believe it.
Since Allie's energy level and behavior does not change while consuming very few calories, I'm convinced she doesn't feel hungry. There is no way that a little child could feel hungry and not cry, wine or simply be upset about not satisfying the feeling. There is still the possibility that Allie feels "hungry" but doesn't understand the sensation, however my thought is her behavior or energy level would still change if she felt it even though she didn't know what it was. She would still feel different than normal and act out on the feeling. Of course I'm no doctor but I do know my little girl and the more I study her, I'm beginning to truly believe she doesn't feel the "hunger" sensation.
Matt and I have been talking a lot about Allie's tube weaning progress and we both feel like it's going down hill. Allie is losing weight and consuming less food orally than before. Of course we don't want to give up just yet, because progress could be right around the corner. We both agreed we should try Allie on an appetite enhancer medication again. This seems like the optimal time to try it. So, I contacted her GI yesterday and he agreed. We started Allie on Erythromycin last night and we are hoping to see her appetite increase in the next couple days. Allie was on this medication a year and a half ago and we didn't see much progress, but we are hoping this time is different.
Since Allie lost weight at her last weigh in, I made an appointment for tomorrow morning for another weight check. We'll see if the scale tips up or down - of course we are praying for up!
On a very positive note, Allie had a great feeding therapy session today and she ate like a champ! YEAH ALLIE!!!