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Winter 99 Table of Contents
Versión Español de este artículo (Spanish Version)

By Cathy Allen, Parent, Mesquite, Texas
Reprinted with permission from The Perspective, Fall 1998

Editor's note: Not only is Cathy Allen a parent; she authors a webpage called Rachel's Page <> and does public speaking engagements such as conferences, retreats, women's groups, and leadership workshops. If you would like to contact Cathy about making a presentation or to let her know how much you like her work, email or call (972) 270-9786.

Most of you know that Rachel was born with CHARGE Syndrome. And, although I'm not going to take time in this article to explain the full details of the syndrome, I would like to tell you of her progress in many areas and let you know what we are concentrating on at this time.

The really great news is that Rachel's respiratory status is so improved that we no longer fear for her life on a daily basis. The trach continues to present a life threatening risk if it were to become obstructed or pulled out, but hopefully neither of these things will ever happen to her. We carry a suction machine with an emergency trach bag with us everywhere so that we can help her if something like this should happen. She continues to have lots of secretions from her trach, and we are trying different medications to see if we can discover something that would reduce these.

Rachel is still fed through a g-button placed directly into her stomach. She is fed a special formula (Vanilla Pediasure with Fiber) three times a day and continuously at night. She still has a problem with retching when she is fed, but we're optimistic that a change of medicine will help this. We are still blessed with night nurses who monitor her feedings, give her meds, help her when she has coughing spells and keep her trach clear so she can breathe easily, etc....

We began more intensive Sensory Integration Therapy this summer. In very oversimplified words, Rachel's nervous system has trouble organizing all of the sensory input so that it can be used to help her interact with the environment effectively. For example, we thought at first that she wouldn't walk because of her vision limitations. Although vision plays a part in it, we have discovered that it's not that she's afraid to walk because she can't see in front of her, it is because she can't orient her body in relation to the space surrounding her. Because of this she can't stand without holding onto something, and therefore, she can't walk because walking requires you to be balanced in space. But she has made a lot of progress this summer (thanks Denise!!), and we are totally excited because she has begun to take steps from one person to another and has taken up to 10 steps!!

The biggest thing going on for Rachel right now is that she turned 3 years old (September 21)!! She began going to school every day from 9 a.m. - 11 a.m. at the Regional Day School for the Deaf. She is learning so much sign language (she knows at least 55 words) and is beginning to really communicate well. In fact, if she is in a chatty mood she will just sign all the words she knows without actually wanting anything except to talk. With her hearing aid she has only a mild hearing loss in her right ear. But because of her trach and her inability to breathe around her trach, she cannot speak. So sign language is her means of communication at this point. There may come a time when she will learn to speak when she gets her trach out, but there is no guarantee that she will. She will have an Intervener who will work one on one with her in the classroom. The Intervener will help her to grasp concepts that she doesn't notice because of her lack of vision and will provide a supportive and effective environment for her to learn in. The Intervener is such a new position in Texas that there are not clear guidelines for its implementation. Please pray that we, along with the teacher, intervener, therapists, and school administrator, will be given extra amounts of wisdom, cooperation, and energy to make this a successful school year for Rachel and everyone involved.

And about Rachel - she has such a vibrant personality and lives to play with her brothers. She has gotten into pulling things off shelves, emptying drawers, and throwing every towel out of the laundry basket. Of course, she does this with such pomp by throwing these things up and backward over her head - it is delightful just to watch the show. She has just started playing with a baby doll by holding and patting its head (before she throws it on the floor). This is the first toy that she has played with besides a stimulating light or sound toy. Rachel has always been too busy to let you hold her, and when she was tired she wanted to be put in her bed. But more and more she is allowing and seeking to be held, rocked and stroked - and let me tell you, when she gets a hold of your neck, you will find that you have been seriously hugged!!