[tri-med] Re: [tri-family] Re: Baby Claire - Neu/Aud appt

----- Original Message ----- 
From: "Debbie"
> I'm sure she responds to pain... she had her immunizations and cried (the
> pouty face was just unbearably sweet!)... she also cries when she is
hungry
> (don't babies feel pain when they are hungry?).

Alex feels pain, don't get me wrong - its just not the same way everyone
else does. Its technically called an altered perception to pain, which is
why you need to actually ask him what something feels like to get an
accurate picture.

Sometimes he will seem to respond typically to pain, other times there is
absolutely no response, even though you expect a major crying jag. It also
doesn't help us that Alex really has to be upset to get any overflow tears
(Alex has majorly reduced tear production) The more painful the pain the
less he seems to respond. (eg a mosquito bite really bothers him, as does a
torn cuticle on his finger, but a broken foot or surgery barely raises an
eyebrow)

For example Alex will lash out at anyone who tries to put an IV line in. Not
so much cry but hit and physically lash out. But this is the same child who
does so much better with no pain relief following surgery. In fact now that
he's older and can tell us, he will actually say no to any pain meds (and
they go in his g-tube so its not taste) These days we have learnt and tend
to just give him a little extra local in any surgical wound or an epidural
top up during surgery.

But Claire is definitely one up on Alex - Alex has never in his life cried
for food. If I had left the master on demand feeds as a baby he would have
starved to death and I am serious. Even now he has to be reminded to eat and
when to stop. He is on an appetite stimulant but still I think eating to him
is more a learned behaviour.

>>Claire moves a lot too... she is very
> active and very aware... she really checks out her surroundings (when
she's
> not too sleepy)... not a typical, lethargic T18 baby (or, at least,
typical
> by what the drs expected).

Alex never moved much as a baby at all. In fact he slt around the clock
unless woken. Much of that though was probably due to the then undiagnosed
apneas. These days he just likes to be in everything :-) He's not
hyperactive by any stretch of the imagination, but he is very social and
hates missing out on the other kids.

>how do I  know if she is having one, or just enjoying the
> lights?  Everything is so much more complicated than with a typical baby,
I
> suppose.

If she has a seizure thats worth worrying about you will know - so don't
worry too much (I wont say don't worry at all because I know that would be
useless). Typical babies do stare and jerk and if you watched every little
movement "in case" you will go nuts. As the mum of a typical kid who
suffered seizures I was always on the watch with Alex. Eventually Alex's
neuro and I talked about it - the bottom line is that minor seizures are not
that big a deal. Its only if they go on for any length of time, if they
interfere with life, or if the person stops breathing, that anyone would
really worry.

Relax and enjoy Claire, thats the most important thing!!

> can you have too many?  The aud is here in town, the neu is out
> of town, how do I get them to agree to one scan?  or, as I asked, is it
> fine for them to each do their own thing?  (I don't think the insurance co
> will appreciate that).

Unless things are different over there, you wont have the audiologist
ordering a scan because they aren't a doctor. But yes you can have too many,
but more importantly all of Claire's doctors and specialists need to talk to
each other. I always insisted that I got a copy of any report written by any
of Alex's doctors and then when I went to see a new doctor I would take a
copy of what the other doctors had written. That way there was never an
excuse that one didn't know what the other had done or thought.

> Claire will get her first Early Intervention appt tomorrow morning!

How did it go??

> (finally) I love having lots of different drs and nurses look at her, they
> all have some good advice for Miss Claire and her mom... (and we just
> ignore any bad stuff they say, that we can't do anything about - hehehe!)

Sounds like you have already learnt the most important lesson in dealing
with doctors!!!

Perhaps parents would enjoy their children more if they stopped to realize
that the film of childhood can never be run through for a second showing.
  -- Evelyn Nown

Keep Looking For Rainbows!!
Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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