[tri-med] Re: Aspirating

----- Original Message ----- 
From: "Sarah Baptista" <baptistas@xxxxxxxxxxxxx>
> Since then we have not been feeding her by mouth because we had a doctor 
> who told us it could be dangerous for her and that she might aspirate.  We 
> have been trying for months to get our doctor to give us a referral for a 
> modified barium swallow test but she would not.  We have recently changed 
> doctors and had the test done last week.  Both the doctor and the speech 
> therapist who were there during the test told us that she swallowed well 
> and that we could start trying to feed her by mouth.  Since it has been so 
> long since she had a bottle this is proving to be a very hard task.  In 
> talking with another mother of a T18 baby today she mentioned that a lot 
> of trisomy babies die from aspiration pneumonia.  Now I am wondering >if 
> it is even worth trying to feed her by mouth.  What would you all suggest?

Sarah, if the testing didn't show that Zoe isn't having any swallow issues 
AND she is able to eat orally I'd go for it.

When Alex was born he had NO suck reflex (or many other normal reflexes 
either for that matter).
I tried to breastfeed but that didn't work out obviously and I couldn't 
develop a 'relationship' with the manual pump on top of all the stress of 
having a baby with so many issues at birth, and not knowing was was 
wrong/what we were dealing with.

Giving Alex pumped breastmilk or formula, it took 1-1.5 hrs to get 1 oz into 
him. Literally. And that was squeezing the milk out of the bottle into his 
mouth and then stroking his throat.

For us it was do or die, nobody had ever mentioned the possibility of any 
feeding tube (or therapy or evaluations......geeze it was like the dark ages 
for us then). Literally do or die.

For the first 9 months or so it took that 1-1.5 hrs to get some ounces into 
him. Felt like all I was doing was feeding some days as we were told to feed 
every 2 hrs.

When it was time to move onto baby foods same thing. Took forever to get him 
to eat a little, a very slow process. Talk about a labor of love! lol

By age 4 he was eating a lot of table foods but NOT MEAT.
Alex was almost 6 before he was eating table meats.

Now as a 19 year old he's typical teen and loves the junk food.  :-)
However, if I keep a veggie plate in the fridge with dip he's as likely to 
pull that out to eat as he is chips. I've even gotten him making the dip 
these days.

Michelle mom to Alex (19, partial trisomy 14 mosaic) and Molly (15)
MichiganUSA 

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

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