Hi

My daughter Di is also non mobile and generally non verbal (has a few words) and just recently her school sent home a communication device where she can touch a picture (or word) to express her wants or needs. Di's device is the most basic as they have several different kinds. If Austin is in the school pre-k program or birth to 3 have your daughter request an augmentative communication evaluation. They should be able to give you a device to help with communicating.

As far as the gtube is concerned, Di has had one since she was 6 months. It has been a blessing and she still does eat by mouth. We opted not to due a Nissen. She had what was considered mild reflux. And we thought the risks did not outweigh the benefits.

I do not have any advice about the nose breathing. You might want to ask the dr about that. We have always been told they prefer people to breathe by their nose, as Di was a mouth breather.

Good luck with Austin's upcoming apts.

Happy New Year.

Isha. Mom to Di. 5. QCP. My heart.
--------------------------
Sent from my BlackBerry Wireless Device


-----Original Message-----
From: cerebralpalsy@yahoogroups.com <cerebralpalsy@yahoogroups.com>
To: ope@... <ope@...>; cerebralpalsy@yahoogroups.com <cerebralpalsy@yahoogroups.com>; KidPower@yahoogroups.com <KidPower@yahoogroups.com>; special_needs_west_wayne@yahoogroups.com <special_needs_west_wayne@yahoogroups.com>; cerebralpalsyclub@yahoogroups.com <cerebralpalsyclub@yahoogroups.com>
Sent: Fri Dec 29 17:06:47 2006
Subject: [cerebralpalsy] Group answers

Prev | Next > 

Hi
Once again I come to you
humbly asking for help. I
am "Nana to lil guy" As
most of U know Austin's CP
has made in decline in
health soo much.He turned
3 in June.He is Non mobile
& non verbal.He seems soo
smart.All his limbs are
affected w SUCH TIGHTNESS!
Honestly when U pick him
up/carry him its like
picking up a stiff boared.
BUt he has dystonia in
trunk??His hips r
subflexed & is scheduled 4
surgery in FEb for that &
tendon & muscle stuff.On
top of that he has
suffered w phenomia &
asperating.And now they R
talking about G-tube &
Nissen?? And they found
out his LUNGS R only part
of the size regular kids
his age has.AND he is a
NOSE BREATHER..for some
reason Austin cannot/will
not breathe out of his
mouth..can anyone help
with all theses problems??
I know its A LOT to ask.I
am sorry. I only have
webtv so this cant do as
much as a computer.I have
tried to look under past
posts but cant figure it
outSo if someone is
willing 2 copy/paste &
send info that would be
wonderful.
So once again here is what
we need help with.

1.Nose breather
Some of his Drs are
concerned on putting him
under due to the way his
lungs are.Can U grow
bigger lungs? How does one
take care of that problem?
Can he NOT cough because
of some muscle not working
or what??

2. G-tube idea which we
are pretty comfortable w
now/He still may be able 2
pleasure eat?And it will
help him thrive as he is
losing weight & is on
pedisure now.

3,The Nissen is what has
us worried as what lil
research I can do say its
only a temp solution & the
kids still have reflux
problems?? Does the g-tube
also help w
reflux/asperating??? How
can they put a temp tube
in his nose when he needs
the nose 2 breathe?? What
about all the bad side
effects like too much
gas/stomach aches ect..he
cannot walk so all that
stuff settles in his
belly,yes?And vomiting.it
stops that & I guess they
look.feel like dry
heaves/gagging? Where does
that stuff go if he cant
get it out of his body??

The family just had blood
work done 2 see if any of
this is genetic or
different then CP.Also
when he goes in for his
hip surgery they will do a
muscle biopsy to ?? But
that wont be till after
Feb.

Austin is such a
sweetheart..but cuz he is
non verbal I constantly
worry about how much pain
all his problems are
causing him!! He tries
to "use his words" but no
one has taught him tummy
ache ect.When he does talk
he is very hard to
understand & its
frustrating 4 all.His
hands R clenched so he
cannot use sign
langauge.And he does not
have the co-ordination.

I cant tell U how thankful
we are to be part of this
group. Now I pray moms who
R going or had this
experience can share thier
knowledge. Austins parents
R going to Grand rapids
Michigan Jan 5 for another
consoltation on the G-
tube/Nissen so I am sorry
but we need your help
right away.

PRAYERS N LOVE N
GRADITUDE!!
Nana to lil guy

==============================================================================
Confidentiality Notice
This message is intended exclusively for the individual or
entity to which it is addressed. This communication may
contain information that is proprietary, privileged,
confidential or otherwise legally exempt from disclosure.
If you are not the named addressee, you are not authorized
to read, print, retain, copy or disseminate this message
or any part of it. If you have received this message in
error, please notify the sender immediately either by
phone (800-237-2000) or reply to this e-mail and delete
all copies of this message.
To ensure compliance with the requirements imposed by the
IRS, we inform you that any U.S. federal tax advice
contained in this communication (including the
attachments) is not intended or written to be used, for
the purpose of (a) avoiding penalties under the Internal
Revenue Code or (b) promoting, marketing or recommending
to another party any transaction or tax-related matter[s].
To provide you with a communication that could be used to
avoid penalties under the Internal Revenue Code will
necessarily entail additional investigations, analysis and
conclusions on our part.
==============================================================================