From about the end of May until the end of July, the pediatrician was very concerned about Addison's weight. She was being seen on a two week basis and each time we would go in for a weight check, the gain was not significant enough. She continually received the "failure to thrive" diagnosis.
During this time she also saw many specialists. We began with Dr. Bawle in genetics. She felt as though their was no apparent syndrome that she could see with the naked eye. Addy underwent another round of genetic tests, which fortunately came back normal. The doctor did note that she felt that Addy had increased tone in her upper body and she should receive therapy. She is going to see her back in 6 months to watch for developmental milestones.
We then went on to see Dr. Arneja in plastic surgery. He determined that she does not have further signs of a cleft palate other than the bifid uvula (this is the lowest form of a cleft that a person can have). There continued to be concerns about her feeding issues. We tried some specialized bottles, which later failed because they were more for sucking issues and Addy seemed to have more difficulty with swallowing. He is going to follow her for her hands and agreed that she should receive therapy, OT and PT.
Next up was Dr. Chinarian in physical medicine and rehabilitation. Mom was anxious for this doctor as he is well known among my area of special education. Many of my students see him for their disabilities and I felt as though he may provide great insight into what seemed to be going on with Addison. He too felt as though there was no syndrome that he could pinpoint. He agreed that therapy would be in her best interest and did us a big favor by moving us up on the waiting list. From this appointment she had an x-ray taken of her neck which later revealed that everything inside is normal.
We then saw an ENT, Dr. Haupert who diagnosed her with laryngomalacia (an immature flopping of skin that covers the larynx). This could create some feeding issues, weight gain issues and abnormal breathing patterns. Most children outgrow this, so she will be watched closely.
The pediatician continued to be concerned about her weight gain so we began making her formula thicker for more calorie intake. This seemed to be the turning point we were looking for. Thickening her formula drastically changed her feeding. She was better able to control the formula and her swallow improved. The doc also ordered an echo and renal ultrasound just in case and both were normal. Yeah!!!
By the end of July, therapies had begun and the doctors started to be less concerned about her weight. At each appt. she continued to gain a decent amount of weight. She weighed 9 pounds, 8 ounces.