Side note: we've had a lot of people wondering what company we are doing our tube weaning through. After we had initially booked our first therapist from Europe, there were a few issues and we had to break off our contract with him. Luckily, we quickly found Spectrum Pediatrics in Virginia, who have been absolutely incredible to work with, and offered to have one of their therapists come to our home. Same service, different person. Heidi Moreland is our Speech Pathologist who will be arriving in our town tonight, and will start our tube wean tomorrow. We are so so thankful to be working with Spectrum Pediatrics; honestly, they are amazing and I would recommend them to anybody interested in doing a tube wean.
The weaning officially begins tomorrow; however, we have been preparing for it for 5 days now. Last Thursday, we began slowly reducing the amount of food that Elsie gets through her feeding tube. I have been hesitant to share this information publicly, because I'm afraid that people will misunderstand and think that we are cruelly starving Elsie and withholding all food from her. That is absolutely not what we are doing. The amount of calories she usually gets has been reduced. She still gets food through her tube, and her normal amount of water. We are not starving our child. Promise.
Starting yesterday, Elsie starting showing real signs of hunger. She is asking more and more for food to eat orally, which is great. The fact that she is associating food with appeasing her hunger is a huge step. Although we have reduced her tube-fed food, she can have all of the food orally that she wants. She is still chewing and spitting out the food, but is drinking a greater amount of liquids than before with less choking. Elsie is also swallowing more amounts of liquid foods like a pineapple smoothie and a soft-serve ice cream cone. She is trying so hard to eat and wants to eat.
I have every confidence that Elsie will be successful with this tube wean. I know it will be hard for her and for me, but I have no doubt that she can do it with Heidi's help. We can't wait to get started tomorrow!