[ Post a Response | Cat Eye Syndrome Interest Board ]
Posted by Kelly Greene on 10/29/2004, 8:39 am, in reply to "Feeding Problems" Teagan has CES like your daughter. He had his TAPVR repaired at 6 weeks of age We did intensive oral-motor therapy with him from birth even though he was I would also highly recommend Dr. Alberto Pena for the 'pull-thru' surgery to Teagan has had 18 surgeries to date and is doing very well. We carefully Feel free to contact me with any other questions. perkins5@forwild.umass.edu 413-665-9292 or cell 203-213- My best to your daughter, Kelly Greene
24.91.181.27
I saw your post to the website and thought I would chime in. My son Teagan
(close to Reagan) is 5.5 and still has his mickey although we haven't used it
in 18 months.
and also has imperforate anus which was repaired at 9 months of age. Teagan
has a more involved cranial facial abnormaility than your daughter. He has
bilateral facial microsomia. He was trached shortly after his heart surgery.
At 18 months he had mandibular distraction and was decannulated a year later.
Teagan didn't start to eat until after the distraction. Prior to that he was
aspirating. Initially, he was sent home from the hospital (after 10 weeks)
with an NG tube and some oral feeds but at about 3 months of age the aspiration
started and we had to go NPO. At that age the larynx drops and intiial protection of the airway diminishes.
NPO. We used Suzanne Evans Morris,SLT, feeding guru, as a consultant. Her web-
site is www.new-vis.com. She wrote a great book Prefeeding Skills that I would
highly recommend. I would recommend a swallow study and a feeding
consult before making the final decision to go with a g-tube.
correct the imperforate anus. He has originated and perfected this surgery and
all others refer to his work. There is a web site and organization called the
pull-thru network that is very informative. www.pullthrough.org
researched each surgery and chose each surgeon accordingly. We have used 5
different hospitals in the northeast and will be traveling to CA for microtia
reconstruction. Thank God for pub med and the internet! His ongoing issues
seem to be motor related and he continues to receive PT, ST and OT services.
He is a very happy, smart, energenic little boy and we feel blessed to have
him.
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