A Lil' Boy's Journey to Live….

Update .. Riley had a visit with ENT today. In their voice clinic. The visit went well but there is always something .. right? Well ENT is sending Riley over to plastics. They believe Riley may have Velocardiofacial syndrome .. 22q .. DiGeorge Syndrome. When it was explained it made sense. I’m just not sure why we’re just hearing this now at 7 years old. ENT has reached out to transplant to check Riley’s prenatal records from the fetal heart program. Luckily all of Riley’s care has been at CHOP since before birth so getting this info won’t be a problem. My thought is though that either he doesn’t have it or they haven’t tested for it because if they knew he had it I would know.
So for now we make an appt with yet another team and go from there. The thought is though that Riley has had pretty intense therapies for the last 7 years. It may require surgical intervention .. But we’ll cross that bridge when we get there.

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Comments on: "Riley’s Visit with ENT .. ♡" (1)

  1. Praying for Riley… BTW, did darren see the FB message about the Thomas the train tent ?? I have them holding it for me, if U think Riley would like it, and isn’t too old… I would treat him to it… bruce

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