As told by Addison’s Mom, Melanie
Addison celebrated her fourth birthday on February 24. She was born full-term yet didn’t have the ability to suck or swallow and she didn’t have a gag reflex. She was also born with hypertonia (high tone) in her lower extremities and hypotonia (low tone) in her trunk and upper extremities.
She underwent multiple tests, saw numerous specialists (neurology, pulmonology, genetics, therapists, cardiology, GI, etc.) with no clear diagnosis given for why she was born with medical/feeding issues. Her main diagnosis is Pierre-Robin sequence (which for Addi means her jaw is small and recessed). Addi’s medical issues were a huge surprise as the pregnancy was uncomplicated and we had a healthy boy over six years ago named Noah (Addi is his biggest fan) and no other family history for these issues.
In order to feed Addi safely at home she received her first g-tube when she was seven days old. She could not even swallow her secretions so we suctioned her quite frequently. She had very little tongue/facial movements and her smaller jaw caused airway issues so she had frequent apnea spells - even when she was awake.
She never was able to take a bottle or breastfeed and she was 100 percent g-tube fed until she was three years old. We gave her tastes only up until the age of three as anything more would lead to choking and/or aspiration. She started eating small amounts of food safely last Jan/Feb of 2014 and really starting improving over the summer of 2014.
Her eating changed dramatically this January after undergoing a treatment plan set into place by Sharon Collins, MD, and the rest of the Witwer Children’s Therapy Feeding Clinic team (we saw them in November 2014). Prior to coming to the Witwer Feeding Clinic, my husband (Josh) and I took her to multiple doctors and we were frustrated by the lack of help. So, by the time we heard about the Witwer Feeding Clinic it took me some time to make an appointment. Also, Addi already had been working with Lisa Dolphin, an occupational therapist at Witwer Children’s Therapy, since she was about one, and was making steady progress.
After making an appointment with the feeding clinic, a diet plan was set into place as well as a three month course of Nystatin therapy (antifungal to treat Addison's known yeast overgrowth in her small bowel). We started both the diet and the medicine right after Thanksgiving.
In January, about six weeks of the diet/medicine treatment, we started noticing HUGE differences in her. She not only was eating up a storm, but talking and walking so much better. We trialed her on a week of no g-tube feedings, since she was eating so well, and she not only maintained her weight but gained four ounces! This was beyond amazing to us since we struggled since she was six months old to get her to gain weight.
Addison still has a long way to go until she is a great oral eater but the best thing we have gained from this experience is she will be able to eat fully at some point. For three years we were not sure if she would ever be an oral eater. Since January 2015, we now know she can and will be able to eat most foods if not all foods. I can't even explain how incredible that felt to even write that last sentence! We are so thankful for everyone who has helped us on this journey - Lisa Dolphin especially. She really is an amazing resource for us and cares so much about her patients.
Watching Addi eat her birthday cake was a very special moment for me. In fact I didn't get any great photos of her eating her cake, I was enjoying the moment too much I guess! There was no worry of choking/aspiration and it was so normal. Just a four year old girl licking her plate clean and asking for seconds like there had never been years of feeding issues and endless frustrations before.