[tri-med] Re: Josefina

Welcome Josefina and mamma Monica and Papa Vladimir,

I hope you are finding answers or at least info to that can help you in
finding a solution to today's issue.  

In regards to cramping, Anthony did not tolerate his formula (Neosure 24
cal. Powder) so our doc changed him to Alimentum Ready to feed. No mixes
since the mixing itself added air bubbles.  Anthony is doing much better
keeping it down but still has reflux.  We increased the Zantac dosage
over time as his reflux continued.  We even had a barium swallow done to
test the hypothesis of a malrotation.  Finally, our GI doc put him on
Prevacid and it worked like a miracle.  Additionally, Anthony has had to
take 0.3ml of Mylicon (Simethicone drops) with EACH feeding to minimize
his gas (pains).  As he gets older, we don't use it as often but maybe
once a day or so.  It helps him burp better (without spitting up) too.  
 
I pray you find the answers you need.

Janina Arritola
http://gregoryarritola.tripod.com 

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Vladimir Vallenas
Sent: Sunday, March 26, 2006 12:41 PM
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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