Posted by holly
on 3/10/2009, 7:45 pm, in reply to "prs and palatal prosthesis"
66.226.201.66
Hey there...welcome to the group and congrats on your new little baby. I don't have any info to give you on the prosthetic. My daughter's cleft at birth was really wide. It went from gum line to gum line in the back(does that make sense?) When they told me that they just sutured the two sides together to fix it, I had no idea how they would ever be able to do that. She had nothing to sew together. Her palate did "grow" together on its own as she got older. She will be a year old in three weeks. There is only about 1.5 gap between the two sides. I guess my suggestion on that would be to get a second opinion or do some more research on it before getting one. It may be more trouble than it is worth. Things do get better. Where are you guys located? This is a great site to get info and to ask questions/vent. It is the only thing that saved my sanity in the begining. Talking to other moms who were "further along in the process" gave me hope that there was some light at the end of the tunnel. Good luck with your baby!
--Previous Message--
: Hi everyone, I'm new to this message board.
: I've read a lot of the posts but never
: really get the time to post my own message.
: My daughter Ashley was born 12/19/08 and was
: diagnosed with prs the following day, after
: a scary night of failed feedings and
: breathing trouble while rooming in with me
: in the hospital. She spent 6 days in NICU
: while we fought to figure out how to help
: her breathe and eat. Thankfully she made
: some improvements and we were able to bring
: her home on Christmas Day, the best present
: I could ever have hoped for.
:
: Like many of the other posts I've read here,
: Ashley sleeps on her stomach with an apnea
: monitor, had to be partially ng tube fed
: till last month when we switched from the
: Haberman bottle that she struggled with to
: the Mead-Johnson nurser with ortho nipple.
: suddenly she went form only eating10-20ml
: from bottle and having the rest tubed to
: taking an entire 60ml from the bottle over
: the course of a week. It was amazing what
: that bottle change helped her accomplish.
: She started gaining weight well and at her 2
: mo. checkup her ped discharged her from ng
: tube.
:
: Overall, I feel very happy and thankful that
: she is doing so well so far. I am however
: often catching myself looking for other
: problems in her, worried and nervous,
: waiting for the other shoe to drop so to
: speak. Probably because until now the only
: person I've had to talk to about things is
: my husband, but no one who's "been
: there, done that". Anyway, I've gone on
: long enough for now, thanks to anyone who's
: held on this long reading this .
:
: I do have one question b4 I go tho...anyone
: had any experience with a palatal
: prosthetic? It's kind of like a mouthpiece
: that covers the cleft to allow the plates to
: grow together some on their own. Ashley's
: plastic surgeon recommended it bc of her
: cleft being so wide I guess there's not much
: to work with. She got hers mid February,
: can't eat with it in so we remove it for
: feedings. But overall she seems so unhappy
: with it in I don't know what to do. Any
: advice would be helpful.
:
: thanks, Julie
:
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