Thursday, July 2, 2015

Tube Wean, all alone, Day 1

Ha ha how's that for a depressing title? It actually hasn't been too hard since Heidi left yesterday morning. It was just super nice when she was here, because she was basically Elsie's personal assistant and slave, and now I am, haha! It's a lot of work. I can't complain though, because she is eating. This is just the "intensive phase" of the wean, which means that it's intense. It's a lot of work for her and for me. Elsie hasn't miraculously stopped spitting out all of her food. She stopped spitting out some of her food! She is still learning to chew and swallow properly, which takes most young children around 6 months to get the hang of. She not only has to do this, but also overcome the habits and fears that she has developed over the last two and a half years of her life.

Heidi counseled me that Elsie's skills will continue to improve as times goes on. Right now she has maybe a dozen foods that she successfully swallows, and that list will grow, and it will start snowballing quickly. And as long as she maintains her weight orally, then there is no need for tube feeding. I can't even believe that I haven't picked up a syringe or extension set since Sunday! Life without tube feedings definitely isn't easy yet, but it will be soon, and it is better. Elsie loves to eat. She gets so excited to see her favorite foods.

It really has been a dream come true to have Heidi come to our home and help wean Elsie from her tube. I lost track of the times that I told her "I can't believe this is really happening!" It has been amazing, and still is amazing, every time I see her willingly swallow a bite of food, or drink an entire cup of milk. It's a daily miracle unfolding that I get to watch every day.

 Does anybody have any questions for me about the wean?

1 comment:

  1. How often will she get weighed? If she were to lose weight, how much would she have to lose in order for the tube to be put back in use? I am so proud of all of you! This cannot be an easy task.