Hi. Thanks, Mark, for the warm welcome.

Yes, Tyler can get outside, but right now it's really a pain-in-the-you know
what. He's on a large, out-dated ventilator (the T-Bird Legacy). This vent
weighs 40 pounds alone -- this doesn't count the battery pack, the special
"kid-kart", the suction machine, etc. His vent team is trying to transition him
to the Lap Top Vent which will be easier for all of us. We live in Michigan.
Unfortunately when we were finally able to take Tyler home, it was in the start
of winter. He received monthly Synergis shots for the prevention of RSV. His
last shot was this month. We hope to take him outside more once the weather
warms up.

Amber -- I totally appreciate your frustration! Sometimes it definitely
doesn't seem fair that the "system" doesn't help couples who actually are
employeed and planned their family! Tyler was conceived only after years of IVF
treatments. I often thought maybe I should have become a crack addict and claim
welfare in order to have a child -- you always hear on the news about woman like
that who can't stop spitting out the babies! (sorry -- I just needed to vent a
little.)

This is my time joining an online group. Thanks for the nice welcome!

-Sylvia

Amber <always_adorable@...> wrote:
We have already been on the news and in the paper - no results! We
jusy keep praying that he will get the help he needs. He cant stay
in the hospital forever
~Amber~
-

-- In ventilatorkids@yahoogroups.com, samjames@... wrote:
>
> yes it does seem like that sometimes, Amber. i hope things work
out
> for you. is there any opportunity to contact a newspaper or
> congressperson in your area to try to bring attention to the
matter.
> as goofy as it sounds sometimes some recognition can go a long way
>
> best regards
>
> mark
>
> ps welcome to the group, Sylvia. are you able to get Tyler
outside
> at all? Which state do you live in?
>
> take care
>
>





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