Today’s Headline News: Caroline ate a few spoonfuls of applesauce. Big news, right? Well, it is if you haven’t had anything to eat with your mouth in over six years!
After Caroline’s diagnosis of Rett syndrome, one the of first procedures we had done was placing the g-tube in my little girl. The doctors convinced me this procedure was necessary to sustain her health and to keep her nutrition levels high. Caroline’s lack of muscle control made it very difficult for her to swallow properly so she aspirated, which put her in the hospital with pneumonia a few times.
One thing I can say about Caroline’s support team is that we ALWAYS think outside the box. Dr Warren, Caroline’s favorite care giver, once said to me,” We have to be pro-active and aggressive with our care for Caroline.” He coached me with proper suction techniques, respiratory treatments, and provided support and guidance over the years, all the way up to his retirement.
His foresight still remains in effect today.
A few years ago, Caroline was doing extremely well health wise. She hadn’t had any of the recurring bouts of pneumonia, so we decided to step it up a notch as the good old doctor had advised. We got involved with a speech therapist and nutritionist at the feeding clinic at Hershey Medical Center. If Caroline could swallow more effectively, we thought, then she would be able to clear her natural secretions and not aspirate. We started with some oral stimulation exercises, which created saliva so that she could learn to swallow. This treatment continued for over a year, three times a day, every time Caroline was tube fed. She responded very well to the exercises and got to the point where she swallowed almost every time her mouth was stimulated. This was the milestone we had all been waiting for: It was time to try real food!
Yesterday’s menu consisted of 10ml of unsweetened applesauce dipped in lemonade. Not a typical Christmas Day Dinner by any stretch of the mind but hopefully the start of something big.
Caroline will practice with this menu for the next eight weeks. After that, she will be evaluated again with a swallow study. This consists of adding barium to the mix so that we can use an x-ray machine to watch as she swallows.
Why are we doing this? It’s simple. We want Caroline to have a richer, fuller life. Today it’s applesauce. Yesterday it was learning not to aspirate. The goals are small, manageable. But each little step brings Caroline more fully into the sensory world, a world with the bitter, the sweet and maybe one day even something spicy.