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Re: what a difference a year can make

Posted by Valerie on 12/31/2010, 7:00 am, in reply to "Re: what a difference a year can make"
65.43.231.104

Hi Tiffany,
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??

--Previous Message--
: 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!!
:
: --Previous Message--
: Hello
: 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
:
:
:

Message Thread

what a difference a year can make - Robin 9/5/2010, 12:15 pm
- Re: what a difference a year can make - Tiffany 9/10/2010, 2:14 pm
  - Re: what a difference a year can make - Valerie 12/31/2010, 7:00 am
  - Re: what a difference a year can make - Robin 9/10/2010, 6:35 pm
- Re: what a difference a year can make - Jenn 9/7/2010, 7:38 pm
  - VohnradeusirgC - celebrex 2/26/2012, 11:36 am
  - CGENEuTcgf - cigarettes 2/14/2012, 3:11 am
  - DPmBtQOMlWZxnC - name 2/12/2012, 7:10 am
  - XynaUAWXKUERWndX - name 2/12/2012, 4:40 am
  - WaPOQWJVtAiMlCSR - name 2/12/2012, 2:17 am
  - UJXzEiWuihuIEmpTH - name 2/11/2012, 9:52 pm
  - PkHmblHHoy - name 2/11/2012, 7:45 pm
  - vRzmSoqnowFebrfpd - mmrmsv 2/8/2012, 3:51 pm
  - oUakTksWyViRosO - CWpniXSmAMsFv 2/7/2012, 9:14 am
  - WjFfpwctbaP - SwQvHNmSIMAGPYfmWf 2/7/2012, 5:05 am
  - ygmDUHkFWJb - LlAGFrWipsWCwDIo 2/6/2012, 9:17 pm
  - nMOxgxDPhMMdCxUpvy - qtLoHEqDflJPEhEoE 2/6/2012, 5:23 pm
- Re: what a difference a year can make - Holly 9/6/2010, 6:34 pm
  - Re: what a difference a year can make - Lucy 10/26/2010, 8:40 am
    - Re: what a difference a year can make - Amy 1/11/2011, 10:14 pm
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--Previous Message-- : Hi Tiffany, : 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?? : : --Previous Message-- : 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!! : : --Previous Message-- : Hello : 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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