z-vibe and pasy valve

[Guest guest]

Hi Kristi-

Thanks for your e-mail!!! I am feeling SO very welcomed. Maya got her double

z-vibe from Children's hospital when she was a few months old and is VERY

attached to it. I think it is the reason she does not have oral aversion. You

can find all sorts of Z-vibe products in the oral motor section from the web

site: www.southpawenterprises.com . I like the double one and Maya is able to

turn it to either end, but they have a single end one that is cheaper. Maya's

passy-valve was adapted by her ENT who used what looks like a tiny hole punch (I

think the hole punch was used for something else, but they like to modify valves

to get kids used to them before they have to wear the real valve.) The hole is

VERY tiny, about the size of the end of a dull pencil tip (the lead end).

Sometimes the hole will get turned and get stuck behind one of the bars of the

passy valve, and Maya will begin to have more difficulty breathing or just pop

it off. Then I use the little tool she used to have

that would pop the battery out of her hearing aide, to turn the hole so it

won't be blocked. I love it because she can clear her coughs right through the

hole (and yes, she occasionally hits a window or our faces if we are really

lucky), but when she wears a regular nose she coughs into them and saturates

them very quickly.

I can try to find out more info if you are interested in one for Gracie.

Marty mom to Maya 13 months

kristiswann@... wrote:

Hi Marty!

Welcome to the list-serve - - there are amazing and wonderful people here...

it's an education every day!

Little Miss Maya sounds like a real trooper! And a smart little cookie - -

already signing " duck! " That's great!

I laughed when I read your last paragraph about her crying when you try to

make her crawl and how she loves ceiling fans, lights and Shasta! Sounds like

my daughter, Gracelyn " Gracie " - except it's when we try to make her roll onto

her tummy. Fans... lights (especially flashlights!) and her dog Sophie are

all favorites! (Her favorite toy is Daddy, although the ceiling fan in our

family room is a VERY close second!) Also... Gracie LOVES popsicles... but once

she sees one, she starts salivating and then it's a suction session!

Like Maya, Gracie is trached... although I can't offer much input on how

things progress. She was trached last September following airway damage caused

by

extibation for heart surgery. She's still, what we call, a " junky monkey "

and requires frequent suctioning. We have noticed that this summer has been a

lot better because the weather is dry. And we are dreading winter and the long

months of hibernation.

You mentioned that you modified the passy-muir valve. How big is that hole?

We are trying to get Gracie used to it, but no such luck. Just looking for

pointers! :-)

Also, what's a " z-vibe " ?

Welcome, again!

Kristi

Mommy to Gracie, 2 yrs, 4 mos.