Evie, at therapy today, ate over and above what she has been eating for the last several weeks, and for the First time today, I understand why. The therapist does not ask if Evie wants a bite. Our therapist simply says "Open your mouth, take a bite". Amazing how 6 words change my feeding technique at home. I usually ask "Do you want a bite?" and she will ALWAYS, shake her head "no". Well, duh, Mom, don't ask. Demand. not force, but Insist. It made a total difference. Throughout the course of the day, She ate 2/3 of the baby food we gave her. She also played with 98% FF turkey slices, and fed that to the dogs. She also took a sip of water, when I said "Take a drink". I was not mean. I did not make her cry. But I did insist and did not take "No" for an answer. It was not an option. Non-negotiable.
We are planning on taking Evie to Baylor's feeding clinic as soon as we can get an appt. But I am hoping that we can somehow manage to help her eat at home, instead of having to be inpatient at a hospital, more than 3 hrs away. The feeding clinic would teach her to eat, and essentially wean her off the tube. We are still a ways away from weaning, but today's experience with food was a huge step for Evie. And for me too. I have learned that if you don't make her eat, she won't. And, unfortunately, food is something she has to have to live. And if I don't force her, then she will always be tube fed.
Its not that I want her to have the love of food that I have, on the contrary, I just want her to eat to sustain her life. I feel that maybe, if she can eat a whole baby food container by th4 end of the week, then maybe by next week, she will be eating 1.5 baby food containers. And the 2, and so forth. It is the beginning of the end, I am hoping.
Please be praying for us, as tomorrow she is going to see an Infectious Diseases Dr about the Pseudamonis in her stool. Pseudamonis is a bacteria that causes ear infections, and trace amounts can be found in your stool, however, the amount that Evie has in hers is very dangerous. And from what I understand, if not treated, then it can get into your blood stream causing toxicity. Too, we are having an issue with lots of retching due to high amounts of bile in her stomach. So, we were told today that her Jtube may have gotten out of place. We rushed her to the ER, and thankfully it is in the right spot, however, that means that we now have to find out the reason why there is so much bile being excreted into her stomach. Please, too, keep in your prayers some friends of mine who went to Rwanda for a mission's trip. They left today, and will be back in a week. We love you, and will always keep you, the masses, informed.