Hi Jennifer,
I have a little girl also with PRS and sticklers, Kait has been tube fed her
entire life to date, she is nearly 5 years old. We have probably had every type
odf button and tube that exsists, lol. I have to say that the mic-key button was
one of my favouites. It is great to have some control over the little things at
times and with the mic-key you can at least change it yourself at home when the
need arrises, the only thing i found was that the inner valve would blow quite
frequently, but Kait has a highly explosive gut and so there is always lots of
pressure in her stomache.

Lisa

Jennifer <charmingmoms@...> wrote:


I am a 35 yr old mom of 2 (1 son, who is 4 and a brand new daughter
that is 1 month old).

I was diagnosed with sticklers while pregnant with my daughter. She
was born with sticklers type 3.

she has no vision problems, but does have minor hearing problems,
cleft pallete(soft tissue), recessed jaw. She also has a mic-key
button.

I, myself, only have joint problems and hearing problems in addition
to major dental issues.

I would love to chat with any other moms that have the mic-key button
as I have never dealt with this type of thing before. Are there any
out there that have a feeding tube? I have so many questions, it's
not even funny!

Thank you so much for listening and I am looking forward to chatting
and getting some first hand information.

thank you
jennifer"jenni"

mom to Justin, 4 and Addison, 4 weeks






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