Tuesday, February 19, 2013

"I have an idea..."

On Sunday night during supper, Lu said with her PODD, "I have an idea, I, help, more, eat". I asked her if she wanted to help feed herself more and she nodded, "yes"! In the past Lucy has been able to finger feed herself and could get a loaded fork to her mouth with some assistance, but as time went on she was having less and less success. If she managed to pick up a piece of food, and this she could only really do with her left hand, the hand would most of the time flick the food away before she got it to her mouth. We tried using the same cuff that we use to color with to hold a spoon and she didn't like it at the time, so I have just been feeding her myself for quite some time now.

I'm sure I have mentioned that girls with Rett often have a great deal of difficulty gaining weight and maintaining proper nutrition and hydration. Weighing in at nearly 35 lbs and being 38" tall, this is not currently a worry we have for Lu, but I am passionately determined to keep it that way! So getting food in her is my main priority when it comes to mealtime and keeping her healthy and strong. But...her quality of life, the combination of every aspect of her care and needs, is the very tippy-top priority. Besides keeping Lucy physically healthy, I am always thinking too about her mental health. How does she feel about her life? Is she frustrated sometimes? Does it embarrass her to drink out of a bottle...does she wish she could feed herself? Chad and I thanked her for telling us that she does in fact want to help feed herself and she smiled.

I am always so torn between letting Lu struggle with something or swooping in to help her. On the one hand, she has to struggle with everything she does so some things I think she can be helped with. However, at the same time, struggling a little is how she will learn things and be proud of herself. I don't always swoop in; I restrain myself, but I'm sure I do more than I should at times. She is just so amazingly brave and motivated, and strong, and patient. Even when she is struggling with something, she rarely gets overly frustrated about it which I am always so grateful for. With Rett Syndrome it's just always so hard to decide if a task is something she physically can't do right now, or if its something that she could do if she worked and worked and worked at it. When we were working on feeding before she had little interest in it and barely got anything to her mouth, so we worked on other things.

But now, at her request, Lu has eaten half a can of chicken noodle soup, a packet of oatmeal, and two sandwiches with much less help from me! She is very cooperative with the universal cuff now also. I just support her elbow and lightly hold her wrist to help her keep it steady as SHE brings it to her mouth. She has also been doing better at picking up pieces of sandwich and getting them to her mouth too and she just beams with pride as she is doing these things! I have apologized many times to Lucy for not asking if she wanted to help feed herself. I'm so glad she can tell me things!

1 comment:

  1. That smile on her face brings tears to my eyes! She is going to be able to do so much! I am so proud of you all for working so hard on the PODD-it is obviously opening up a whole new world to Lu. Love you!!