AUGHHHHHHHHHHHHHHHHHHHHHHH!

Okay, I'm better now that I let out that scream. The Dancing Queen has been "eating" the same two pieces of turkey sausage for 20 minutes. She shoved them both in her mouth when she misunderstood her dad's question as to whether she would eat candy. She said yes and shoved the sausage in her mouth because she knew there'd be a price. The Mad Scientist only meant to learn whether DQ had room for more food, but she is 3 and thought she was actually getting the candy. Since I too misunderstood the Mad Scientist, I got her candy. Yet, with the motivation of a chocolate kiss, she is not swallowing the sausage!  AUGH!!!!!!!!!!!

Getting DQ to eat is so frustrating! When it is all said and done, with those two very small pieces of sausage, DQ ate four bites of turkey sausage link (about 1/3 to 1/2 a link), two bites of a frosted strawberry pop tart (low fat even--another AUGH!!!!! why would you buy lowfat when you plan to give it to DQ!!!!), 4 ounces her crazy, ridiculous, expensive amnioacid only formula (aka milk), a swig of orange juice, and one chocolate kiss. We'll be lucky if she got to 200 calories on that meal. AUGH!!!!!!!

Yes, I know many kids are picky eaters and that breakfast doesn't sound too appetizing, but it doesn't really matter. DQ refuses to eat breakfast. Every. Single. Day! Usually, she requests chicken baby food for breakfast. She prefers the number 2s (small jars) and eats about 1/3 to 1/2 a jar (maybe 40 calories), then some yogurt covered raisins, and 6 ounces of milk. In total, about 230 calories. She is supposed to be getting about 1500 calories a day! And if she had her choice, she wouldn't drink milk, she'd drink water!!!!!!! The milk provides the most calories and nutrients for her and water has none o that! AUGH!!!!!!!!!!!!!

DQ eats slightly better for lunch as long as she is not tired. If she is tired, she won't eat a thing. Dinner, she usually does fairly well, but still nothing compared to TRex at her age or even TRex at her size. At 3 years old, DQ is the same size TRex was at 18 months old.

HOW DO WE GET HER TO EAT?

DQ loves food, especially burritos, chili, and spaghetti. She plays chef all of the time. She tries everything. She just won't eat. She did food school with the feeding therapists. We did the exercises at home with her. She improved leaps and bounds, but still, IT IS NOT ENOUGH!

DQ saw her GI doc yesterday and on their scale (the one I trust the most) she still weighs about 25 pounds. The Dancing Queen is almost 40 months old and she weighs almost 25 pounds. *Heavy, heavy sigh*

Her GI doc is the very best and DQ has improved since her last visit because she is not vomiting. We even made it through a dinner at Big Boy last weekend without DQ vomiting on the table. Huge victory for us! And since DQ has been complaining of chest pain at breakfast every morning, he decided to switch up her meds to see if we can get some improvement.

I desperately hope the med change will work. DQ needs to eat because she needs to grow. Growing is the only chance she has at survival. I'm not too concerned about her being small stature. I want her pulmonary arteries to grow. I understand that the pulmonary arteries stop growing around age 6 or so (maybe I'm wrong and it is older, I couldn't find this "fact" online in a quick search). If 6 is the magic age, we're over halfway there and DQ's pulmonary arteries are too small for her current size, let alone a teenager or an adult size. She needs to eat to grow those arteries. There are no interventions, no medicines, no surgeries to be done to help those grow. If they stay small, as the rest of her grows and her blood increases, her pulmonary hypertension will get worse. Her heart can't take much more strain. It already works harder than most hearts. It beats like she is exercising in her sleep.

Does anyone have any suggestions to get DQ to eat more?