By the end of the year, I think we are going to feel really "doctored out" in this house. I know I will at least be sick of all the statements from the insurance companies and subsequent bills to sort and decifer. We have weight checks every week, plus all of my OB checks, plus some other consultations for myself and Anthony, along with Nathaniel's consultations, we feel like we are at one doctor or another every day. We have to be close to reaching Nathaniel's out of pocket max for the year at any time and mine may very well be met before this new one arrives as well, so maybe that will make things less overwhelming.
Another appointment today and as I suspected everything in his ears and throat look good. He continues to drop in weight back down to his old percentile, but is still over a pound more than he was at his second birthday (not quite 8 weeks ago). At the weight gain rate he had prior to the NG tube he would not have been to his current weight for another 10-12 weeks.
Here is the discouraging part ... he is starting to get back to his pre-NG tube eating patterns. He is much more pleasant and less averse at meals. He has been eating regular snacks and meals (with some behaviors here and there - but that may also be part of him being a determined 2-year-old) and I am starting to feel like we are getting closer and closer to the same number of calories through oral intake as he was getting via NG tube. I am not meticulously counting, but eyeballing it all. Yet he continues to lose. My gut says we have to stick out other interventions for a while to see if we can get him eating well again and to see if we can pack in whatever calories we can to get him to at least maintain and go back to his old weight gain pattern before putting a G-tube into his litte tummy. He has been so closely watched with his weight for 1 1/2 years and this is the first time we are dealing with a weight loss. It is just so discouraging to not know what the best course of action is for one's own child. And on top of that to have no real reasons behind the slow weight gain (though now the loss can probably be attributed to his eating patterns having changed).
My gut says ... stick it out and try the less invasive strategies that have been working. It also says we should try the idea given to us by Nathaniel's physician today ... acupuncture. He is scheduled for an appointment next Wednesday. I am hopeful to just try another less invasive method of addressing the weight concern (since height, head size, and development are not concerns in this picture). I am also anxious to see when we may be able to get into feeding clinic so that I as a mom can have support from therapists and can back off the therapist role and let someone else take the lead with that. I can't wait for that extra stress to be taken away from me and the added support headed in our direction.
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