[tri-med] Re: Josefina

Welcome to the list Vladimir and Monica,

You will find this group a wonderful support. As for the reflux our 
Grand daughter Tess who has Trisomy 18 and is nine years old has been 
taking omeprazole 20 mg twice a day and this seems to control the 
reflux and makes her more comfortable. (This is twice the adult 
dose). Your docs could best advise you on dose.

At 04:40 AM 27/03/2006, you wrote:
>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
>
>
>
>
>--
>No virus found in this incoming message.
>Checked by AVG Free Edition.
>Version: 7.1.385 / Virus Database: 268.3.2/293 - Release Date: 26/03/2006

Jocelyn, Wife to Frank, Mother to Ian, Gillian and Susan
Grandmother (Nanna)  to Carly 18, Mathew 17, Ashleigh 16, Alex 14 and 
Tess 9 years (T18)
and step-Nanna to Carrie 18.
Living at North Richmond, NSW Australia 

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

Other related posts: