Hi, Congratulations!! This is great news. Happy B'day to your grand daughter. I have a four month old (corrected age 8 weeks) who has been diagnosed with PRS. We had no idea about any of this till a few months ago when she was not able to swallow/feed with a bottle.
She's supposed to get a g-tube and cleft surgery (at some point) in addition to a jaw surgery too. How easy/difficult was the g-tube and cleft surgery for your grand daughter and how did she cope with it? For my daughter, she's also having transient hearing loss and when we clap or talk to her or play music, she does not respond. It's so heart breaking....we are not sure if she can hear us or not.
There's so much more going on. It's really very overwhelming. She got to come home 3 weeks ago after being in the hospital for 4 months. She is getting all her feeds through NG tube which has come out 10 times in 2 weeks. All the stickers holding it on her cheeks has given her face rashes.
We had an incident in the morning as a result of which we were in ER up to 5am today.
I'm looking forward to hearing from you and congrats once again on your grand daughters progress!!
: My granddaughter was born with PRS
: Sept.3,2009 & as we have her Birthday
: party today I'm so thankful she has came so
: far in a year. She spent the first 3 months
: of her life in the hospital & came home
: with a trach & g-tube. On July 7th she
: had her palete surgery & on the 19th of
: August she got her trach out. I just want to
: say that PRS children & their parents
: are so strong & awesome. I thank the
: Lord everyday for giving her to our family.
: She is truly a gift from God. Take care
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