I am having the problem of spitting up and the ng tube coming out as well. I am just wondering if you have got it under control at all??? Or any advice for me??
: 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
: 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
: I'm looking forward to hearing from you and
: congrats once again on your grand daughters
: --Previous Message--
: 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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