My lovely granddaughter will be 4 in August. She had a rough first few years. She still has routine sleep studies for apnea. She may have to wear the Cpap for some years. That's OK. Her hearing seems to be OK at this point.we don't know what her next few years will entail. We are just glad she is here. That's all you do...just smile and be happy.
: My son who is PRS born 1999, was very sick. He
: has bilateral Tympano mastiodectomy's. June
: 2012 I found out that he is almost deaf in
: his right ear due to a Cholesteatoma. He has
: had a new hearing test which he failed. He
: needs to get the results of his CT to see if
: the Cholesteatoma has attacked his nerves as
: that would change his hearing loss from
: Conductive to Sesory Neural, meaning surgery
: wont bring back his hearing. However he will
: still need the operation to get rid of the
: Cholesteatoma. Also Due to his cleft he is
: missing 3 adult teeth and once braces are
: finished he will have some impants for that.
: Sadly even with an IEP, the schools are a
: struggle. He gets good grades (A's/ B's),
: but is misunderstood and that has rubbed
: teachers the wrong way. At times labling him
: a problem child. He does not cause trouble
: but does get angry when not understood or
: thinks no one will listen to him. It's
: It is still stressfull, but in a different
: sort of way. Yes you have some medical, but
: alot of social issues with it. Like if your
: part deaf or blind or what have you.
: I wish you the best of luck. I hope this
: --Previous Message--
: Does anyone have any information on how
: children with PRS age? Do they have more
: I just had a baby diagnosed with PRS
: requiring a trach and a gtube. I'm a little
: anxious about his life.
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