Apollo had a feeding appointment at Seattle Children’s Hospital yesterday. This news, unlike the recent news from his pulmonologist, wasn’t particularly good. He hasn’t gained a single ounce (or if we want to get technical, he hasn’t even even gained a gram) since the beginning of June. In other words, the entire time he’s been seen by the Feeding Clinic. I asked how much they would like him to gain in that amount of time (over four months) and she said a pound and a half.
And one point I was told, “You don’t need to start tube feeding him again yet…” but if he doesn’t start gaining weight, back to the tube and formula supplements we go. Once again, the question of WHY? Why can’t he gain weight on his own? The only time he has steadily gained weight is when he has gotten formula through his tube. No, he hasn’t been tested for metabolic issues or anything like that, because we know if we increase calories through his tube, he can and will gain weight.
Apollo is seen at the Feeding Clinic every two weeks. I have a myriad of specific instructions I am supposed to follow for his feedings: Apollo is supposed to eat every 2.5-3 hours, I need to give him a protein, a starch and a fruit or veggie, he is supposed to have 15-20 minutes for each meal. So yeah, it’s pretty much like feeding a newborn. A newborn who just won’t eat enough.
Five years of struggle to feed Apollo make this mama weary.
His teacher kindergarten has been outstanding, working with us. When I pack his lunch each morning, I send a list of the foods in his lunch box and the teachers makes notes about how much he eats. The dietician at the Feeding Clinic was thrilled with the written record of both what he was offered and what he ate. It really helps her get a feel for his eating habits and calorie intake. In looking over his lunch records from the last month, she commented on a trend I suspected, but was half denying….he has slowly started eating less and l less at school, and at this point every calorie counts.
So, it seems, we are back to the beginning. This is why, even though we aren’t currently using the tube, we need to leave it in until everyone is sure it is no longer needed.
So there you have it, a not-so-good report from the Feeding Clinic.