By Julie Shaffer
Two days after Christmas this year, my daughter, Lucy, went through a surgery to have a feeding tube placed in her belly. Lucy has a condition called Rett Syndrome (for more info visit www.rettsyndrome.org). Early on in her life it stole her ability to talk and use her hands. It has prevented her from learning to walk, and now it has robbed her of her ability to eat efficiently enough to continue to grow and thrive. She lost over five pounds in this past year and the doctors agreed that it was time for the feeding tube. Many girls with Rett Syndrome have feeding tubes.
Our greatest hopes are that Lucy will gain weight, become more healthy and have more energy, and be more able to fight off the ever-present preschool germs that have ravaged her since school began. So, obviously her health is the main focus, but there is a wonderful side effect to this feeding tube that I had hoped for, but was not sure it would be all I was dreaming it would be. Without the feeding tube, Lucy and I would spend hours and hours trying to get food and drinks into her. It consumed our lives, and as I have said, it still did not even help her maintain her weight. So now, we have a ton of free time to do things that we enjoy!
I have plans to home school Lu for the most part, but we have been working very hard to make preschool work for her also. Girls with Rett Syndrome, in spite of their many debilitating physical disabilities, are generally not cognitively delayed in any way. So Lucy attends two afternoons a week at a regular education preschool and is fully included. However, I tend to always have her halfway out the door to not going at all. She has been sick more in the past four months than she has been in her whole life prior to starting school. Sometimes she cries because she gets too over-stimulated, and most of all, I just miss her when she is gone.
So, I just wanted to share some activities we have been able to enjoy this week and that are educational also, because we are not spending our every ounce of energy worrying about eating. Notice in several of the pictures that Lucy’s feeding pump is sitting beside her and she is “eating” while we enjoy ourselves.
On Monday we made some birdseed cakes to hang outside for the birds. Lucy’s jobs were to help with the stirring and then most importantly to smoosh the bird seed mixture into the molds.
We had to make up a little stand to hang the treats on, but they are right in front of our picture window so we can watch the birds when they come. I also sat a few bird books on the window to try and identify what we see. From a backyard bird coloring book Lucy colored a picture of a pair of cardinals, and we used the bird guides to talk about what birds we might see in the winter, here in central Pennsylvania.
We also painted this color wheel and talked about how one new color can be made by mixing two other colors. In the picture below you can see Lucy’s communication device. It is called a Tobii and is a speech generating device that is operated by tracking Lucy’s eye gaze. We used it to talk about the colors we were making and to make guesses about what would happen when we mixed certain colors together. She was all smiles the whole time.
You can also see that on Lucy’s hand is what is called a universal cuff. Because of Rett Syndrome she isn’t able to use her hands functionally. Since she cannot grasp things for any extended period of time, the cuff is used so she can color and paint, and for whatever else we can think of. It has a little pocket in it that a crayon, marker, paint brush, etc. can be slipped into.
Here are the beautiful colors we mixed up together.
And here is Lucy’s art wall where we plan on keeping her color wheel on display so she can remember how we made it and use it for learning more and more about colors.
I love to be with Lucy. I love to teach her things and watch her as she takes it all in. I especially love to imagine with her where all of this knowledge will take her in life, and what she will do with it all!