[tri-med] Re: Josefina

--- Original Message ----- 
From: "Vladimir Vallenas" <vvallenas@xxxxxxxxxxx>
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.

Welcome and Congratulations Vladimir, Monica and Josefina :o) I'm 
Penny...wife to Joe and mom to Nick (15yrs) and Devon (10yrs). Devon has 
T13.

 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.

No time like the present right??

> 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.

OK...we were told 35cc's every 3 hours and that lasted quite a while. Maybe 
70cc's is the norm???...but that would have been too much for Devon to 
handle at that age. As it was we had to forcibly take the bottle away form 
Devon (he eats orally) every 1/2 ounce because it was better to try and get 
a burp more often then at the end of the bottle. He was not happy about the 
bottle being taken away so often by any means but it made lives more tenable 
if he could get rid of some gas more often. Is it possible to release gas 
through the gtube halfway thru a feed? I have NO idea...Just a 
thought...others can help with regard to Gtubes a whole lot better than I 
;O)


I wish I could actually help...but all I can do is welcome you and tell you 
you are not alone :o) Give Josefina tummy zerberts from Devon and welcome 
hugs all around :o)
Take care...don't forget to take of yourselves too or you'll be no good to 
your daughter :o)

Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to 
Nick (15 yrs old...lover of Fishing, Dragons, Turtles, YuGiOh, 
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (10 
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Kermit, Elmo, & 
food in general. Full trisomy 13 w/balanced translocation 5 and 13) , and 
Trooper the Wonder Dog...our 9 ? year old yellow lab adopted from FL Lab 
Rescue 12/13/02 :o)
Please visit the webpage my wonderful friend Karen made for me on our 
trisomy listserv at:
http://www.trisomyonline.org/victor.htm
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our 3 boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm
AND http://web.coehs.siu.edu/Grants/TRIS/
"We love the things we love for what they are"
Robert Frost 


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

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