Laila is seen by her awesome pediatrician every 3 months when she is well. In between, we coordinate with a number of specialists, including Gastroenterology/Motility, Pediatric Surgery, Otorhinolaryngology, Orthopedics, Ophthalmology, and Endocrinology, as well as Early Intervention, which includes Special Education, Speech & Language, Physical Therapy, Occupational Therapy, Nutrition and Music. She will also begin Hippotherapy soon.
Yesterday we had one of her pedi visits. Her pediatrician, for once, was thrilled with her weight, which is finally on an upward trend! The weight gain, I'd imagine, is due to more successful feeding thanks to our inventive use of the Farrell Bag, which we've been using to vent her stomach (g-tube) while we feed through the jejunum (j-tube). Laila blows through 2-3 Farrell bags a day, but her comfort, weight gain and strides developmentally are well worth it.
Just this past week she learned to give a high-five and has shown much more interest in playing with toys.
Next steps medically involve getting the antroduodenal manometry study done at Children's Hospital Boston to evaluate the extent of Laila's dysmotility and talk about next steps (i.e. will she benefit from an ileostomy), getting insurance to approve Mepilex AG for use around her G-J button site so we can stop cauterizing it so darn often and increasing Flovent slightly to try to decrease the familiar "change of season wheeze".
Other than that, my "Puggle" is a happy girl. That's all for now. One of these days, I'll get around to posting about Laila's underlying conditions and all of that.
Cheers. :)
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