[tri-med] Re: introducing oral feedings

WOW!  That is so cool!  Maybe there is hope for us! :)

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew

----- Original Message ----- 
From: <Kjehjohns@xxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Saturday, October 23, 2004 8:23 AM
Subject: [tri-med] Re: introducing oral feedings


> In a message dated 10/20/2004 1:20:23 PM Eastern Daylight Time,
> ecartis@xxxxxxxxxxxxx writes:
> Our gastro surgeon told us that kids who eat primarily  by tube feedings
> tend to get an oral aversion.  He said it is difficult to overcome it, and 
> I
> think he said that they commonly can do it around the age of 8
> JENNIFER:   My daughter has a feeding tube and has since birth,,,started 
> as a
> ng tube and now has g-tube (also fundo).  We were told to work on oral 
> feeds
> and she should be eating by the time she is 5 years old.  We faithfully 
> worked
> on it hard every day.  We saw therapists and even drove 3 hours a month to 
> a
> special feeding group.  We were also recommended to stop ALL tube feedings 
> by
> a doc and see if she would eat orally by cold turkey for 2 entire weeks. 
> That
> didn't work.  Age 5 came and still no oral feedings.  Very minimally, 
> yogurt
> a bite or two every few weeks.  We were even told that her brain damage 
> and
> lack of oral eating during critical development periods caused her to lose 
> the
> connection between brain and stomach and she would never sense hunger. 
> WELL>>>
> She is now 8 and she is requesting to eat something right when her next 
> tube
> feeding is due.  She is still only eating pureed items but daily she 
> requests
> food and it is linked to when she is due for a feeding. (Every 2 hours). 
> I
> never thought we would be here... especially after age 5 went by and 
> nothing.
> We are far from oral feeds as a means of nutrition.  She is not chewing 
> and
> not moving food to sides of her mouth but it is exciting and encouraging 
> that
> she is experiencing hunger and requesting foods she is capable of eating. 
> Even
> if only supplemental or as we refer to her as a recrecational eater!!
>
> Jennifer - Mom to Emily (8) T13 Mosiac & Hannah (5) Michigan, USA
>
>
>                  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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