After waiting 5 days to hear from Dr. Burdo-Hartman, she finally called today! She essentially described Jordan as having dysphasia (swallowing problems), small size, reflux, low muscle tone, developmental delays, and some other markers (ie: ear tags, simian crease, etc). She said that the next step she wants to take is to have Jordan meet with Genetics - Dr. Toriello is the geneticist in Grand Rapids. She wants to see if there is something underlying that explains things to see if we should approach her in a different manner. She will order chromosomal studies and other metabolic screenings. I will have to collect her urine and take it to the lab where she will have some blood drawn. She said that this is level 1 and we will see if anything comes up and see where we go from there. If there is an chromosomal abnormality, that will help us determine what road we want to go down - it helps to have a name because it will help us know what she may have issues with in the future.
She also wants to increase the dosing of her Zantac since she is currently on a low dose to get her up to a medium dose to relieve any discomfort she may still be having.
She said that Jordan is currently in the gray zone for feeding because she has recently decided to step things up, but for a long time has not been eating. She wants Jordan to see the surgeon to discuss a G-tube because this current method of feeding her is not a long-term solution, but if it is a stepping stone to improving her feeding, we may not need to go through with it. She wants us to stick with what we're doing right now while we work it through. She said it sometimes takes a few weeks to get in to see the surgeon and then a few weeks to get in to the hospital for the surgery.
Please pray for Jordan as she may be having surgery at some point and also for us as we prepare to learn of any chromosomal abnormalities and/or metabolic disorders.
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