Sophie's Progress

Sophie has made a lot of progress in the last 3 months since doctors figured out what was causing her to not want to eat or drink.

She has reflux, which was diagnosed when she was 3 days old. She is on Prevacid and Zantac to treat it. A couple of weeks ago the doctor had us try to take her off her morning dose of Zantac. After 4 days of fitful naps and crankiness, we put her back on it. Since she still visibly refluxes almost every day she will stay on both her medications for now. The doctor still thinks she will grow out of it and not require surgery. She is in the 4% of children that don't grow out of it by 1yr.

She had her first Barium Swallow test in August to help figure out why she stopped wanting to eat very much and drink at all when she was 10 months. The test showed she is silently aspirating when she drinks or eats thin, half-nectar, and even sometimes nectar consistency liquids and solids. She had some penetration of the airway, but did not aspirate with honey consistency. The outcome of the test was that we have had to thicken all her liquids and solids to at least nectar consistency.

She had her second Barium Swallow test yesterday morning at Cardon Children's Medical Center. She didn't tolerate this test as well as the last one, but they were able to get her to drink (from a spoon) enough to determine she has had a small improvement in her swallow but still silently aspirates with thin and half-nectar consistencies. She didn't have as much penetration with the nectar consistency as last time. So until we repeat the test in 3-4 months she has to continue to have everything thickened to nectar.

She has increased her drinking over the last 3 months but still does not drink nearly the quantity recommended to gain the weight she needed to make up and continue to grow. In a typical day she will drink 8 oz of milk. Some days are less. We have found ways to supplement, such as making her oatmeal with half-n-half to get extra calories in her.

When she was in to see her Ped GI a couple of weeks ago she was up to 19 lbs 11oz (14 months old). The doctor and I were very happy with her weight gain and she moved from the 5th percentile to the 10th in weight. She is back up to the normal range for height which explained why she grew out of almost all her clothes. I will count that as a blessing!

She was cleared from speech and physical therapy about a month ago. She took her first steps just before 13 months and is walking well now. She walks everywhere instead of crawling. She has also started to talk - more than just dada. She actually said Mama before Zoe (who talked really early). Her new word is "up". She is also doing better at her sign language at meal time. It is a wonderful thing when they can begin to communicate.