Whether you turn to the right or to the left, your ears will hear a voice behind you, saying,“This is the way; walk in it.” Isaiah 30:21

Wednesday, May 2, 2012

finally some answers- Goldenhar Syndrome

i'm running on about 5 hours of sleep so i'm going to make this short.

we had grant's plastic surgery appointment today in chapel hill. 

after Dr. Gage took a look at his skin tags, he asked if there was anything else going on with him...i told him he was otherwise healthy, but that he had these lesions on his eyes. as soon as Dr. Gage saw them he referred to them as "limbal dermoids." He then checked Grant's ears and mentioned that one of his ear canals was incredibly narrow (which i have noticed already). After this, he checked out his mouth and saw his uvula was split (bifid uvula). 

So what does all this mean?

Grant has a condition known as Goldenhar Syndrome. 

he doesn't appear to have the facial disfigurement that is associated with it, but we really won't know more until we meet with a team of doctors in the craniolfacial department. they will check his entire ear/nose/throat anatomy and determine treatment. 

his skin tag removal surgery (it's a bit more in-depth then i anticipated) will be May 21. the craniolfacial appointment will probably be in a few months where he will be fully evaluated.

its been an exhausting day, so that's all i have for now.

please pray continuously for this sweet baby.


7 comments:

  1. Praying for you guys! Hang in there :)

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  2. sweet baby boy! we're praying!! love & miss you guys!

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  4. Hi Maria, doctors told me if child has skin tag beside his ear that his kidneys should be checked out. Did you hear about that? I made ultrasound for my daughter. Everything was ok. What about Grant.

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    Replies
    1. Hi Katy! Yes, we also had a VCUG (a test to determine if there is reflux with you urinate). Often times a skin tag at the ear could either mean hearing loss/deafness (which can be determined at birth through the hearing test), or kidney issues. Grant had one at around 3 months old and will actually have another VCUG done next Tuesday! The first came back fine, but we have another scheduled for precautionary reasons. I hope and pray everything goes well for your little one! Let me know if you have any other questions-you can email me at mtrochelman@gmail.com or leave a comment here on my blog!

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