[tri-med] Re: Josefina

I might add that we used Mylocon (sp) with Matthew for gas in the early
days...it is simethecone (again spelling?)...it did seem to help.

Ruth, wife to Rudy, mom to Brendon (20), Scott (18), Joshua (14), Matthew
Rudy
(full T18, born 09/13/01, Rudy Matthew (born 08/13/04)...and new little
peanut due 08/23/06.
http://members.cox.net/t18mom

Character cannot be developed in ease and quiet. Only through experience of
trial and suffering can the soul be strengthened, ambition inspired, and
success achieved. ~Helen Keller

> -----Original Message-----
> From: Ruth [mailto:t18mom@xxxxxxx]
> Sent: Sunday, March 26, 2006 7:38 PM
> To: tri-med@xxxxxxxxxxxxx
> Subject: RE: [tri-med] Josefina
>
>
> Dear Vladimir and Monica...welcome to the list! Thanks for
> sharing about Josefina, hoping she continues to do better and
> better. Know you are in the right place for answers.
>
> Ruth, wife to Rudy, mom to Brendon (20), Scott (18), Joshua (14),
> Matthew Rudy
> (full T18, born 09/13/01, Rudy Matthew (born 08/13/04)...and new
> little peanut due 08/23/06.
> http://members.cox.net/t18mom
>
> Character cannot be developed in ease and quiet. Only through
> experience of trial and suffering can the soul be strengthened,
> ambition inspired, and success achieved. ~Helen Keller
>
> > -----Original Message-----
> > From: tri-med-bounce@xxxxxxxxxxxxx
> > [mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Vladimir Vallenas
> > Sent: Sunday, March 26, 2006 9:41 AM
> > To: tri-med@xxxxxxxxxxxxx
> > Subject: [tri-med] Josefina
> >
> >
> > Hello everyone,
> >
> > My wife Monica and I have been registered and following posts to
> > this list
> > for some time now after the birth of our daughter Josefina
> > (1/1/06) who was
> > diagnosed with partial trisomy 6p right after she was born.  It
> > is probably
> > needless to say how this impacted our lives from that moment on.  After
> > spending her first 10 weeks in the NICU of the Chicago Children's
> > Memorial
> > Hospital, Josefina came home and is adjusting slowly to her new
> > surroundings.  We thought this is a good time to introduce
> > Josefina to the
> > tri community as we begin the different challenges of raising a
> > child like
> > ours.
> > Josefina's main problem is the liver which is not very healthy
> and is not
> > working properly in terms of eliminating bile in to the blood
> > stream.  The
> > liver experts here (world class professionals as I understand) can not
> > determine the reason for this malfunction yet, so there will be
> > an extensive
> > follow up in the months to come.  Other complications she has are
> > related to
> > her heart (common among our kids as I learned) but we were told
> > they are not
> > as critical for now.  She had a PDA done already and a G-tube insertion.
> > I'd like to take this opportunity to also ask a question.
> > Josefina is on a
> > every-three-hour feeding schedule (70cc of breast milk + some
> formula to
> > fortify the milk to 27 cal).  She has been having a lot of gas
> > accumulated
> > (I know it is probably normal at this age) which is making her feel so
> > unconfortable that right after she starts eating she would
> start cramping
> > which in turn would exacerbate her reflux.  It is a vicious
> > circle that is
> > making feeding time a constant disconfort.  It is even
> preventing us for
> > doing proper Speech therapy at home since she gets pretty upset
> > by the gas
> > pressure. Additionally, I wonder at what age do other kids her
> > age (almost 3
> > months) start spacing the feeding times to longer than every
> three hours,
> > because by the time Josefina has to eat again she does not seem really
> > hungry and having residuals from the feeding before causes her
> to reflux
> > even more. She is taking 0.5cc of Zantac 2 times a day for the
> > reflux (but
> > does not seem to help).  Do you have any suggestions on how to
> > overcome this
> > situation?
> >
> > Thanks!
> > Vladimir and Monica (parents of Josefina pT6)
> >
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families On-line
> >

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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