[tri-med] ideas on dealing with... - Katrina

>How/Where does one go about getting a dietician? I've

mentioned it once to the pedicatrician...all he said
was 'go for it'.

We got ours approved through our state program "First
Steps". Best of all she is there 24/7, she emails us
and vice versa, so it makes me feel like she really
cares about Genevieve's "failure to thrive' status
even though it is her job.

>I am not sure if the doctors will switch to Pediasure
when she's one. What are the advantages/disadvantages?


Our geneticist is also a special pediatric development
specialist and has been beyond AWESOME! He decided at
1 year she was not getting the calories/nutrients that
'baby' formulas offer so switching to Pediasure would
ensure she is getting high enough calories. Our
dietitan also gave us flavor packets, so we have more
flavor choices like banana, bubblegum, lemon, cherry
rather than Vanilla or Vanilla eith Fiber, Chocolate,
Strawbery and Orange Cream(mmmmm good). We don't get
banana flavored Pediasure here at stores because of
their regional rules so dietitan set us up with flavor
packets.

>What's Willbarger brushing?

I think Karen covered the brushing technique(?) or
maybe in the archive section. Trying to keep up with
emails and respond gets 'confusing' at times LOL Too
many screens open. Brushing technique that you use on
palms, arms, back, feet, legs and then use joint
compressions. If you have OT, they can get you set up
with it. If not, I would contact:
New York
Donna Noyes, Director
Early Intervention Program
State Department of Health
Corning Tower, Room 208
Empire State Plaza
Albany, NY 12237-0618
(518) 473-7016
Fax: (518) 473-8673
E-mail: dmn02@xxxxxxxxxxxxxxxxxx 

There are usually divisions set up regionally or
county wide, not sure how New York does... I know
Indiana recently changed from county based programs to
regional areas. But I would get Rachel in the system
to start any therapies she needs.

>Did you show the dr. who told you she wouldn't walk
that she does?...<evil grin>  Who knows what else 
she's capable of? 

Noooooo, which is unlike me. I am saving her when she
can talk and then perhaps go back in there. He just
isn't worth my time right now.(He does know of her
progress because his collegue 'was' our current
neurologist.) He accused my husband of this(pt5q)
being his fault genetic wise.(Test showed neither of
us carriers) Just proves my point, not all doctors
know everything because they have a printed
certificate on the wall. I remember my ears just
ringing & echoing his words "she'll never walk and you
need to find care for her" Well that gave me the
determination to show him(and fire him) and the World
come h-e- doubletoothpicks or high water, she will
walk. 'Someone' has a plan for her, I don't know what
her path is to be, but the circumstances to get here
and stay here, well it's a much bigger picture all
around...

>I took a peek at Genevieve's photo album...she's
absolutely beautiful.

Thanks : ), she has some cute expressions, it is sad
in a way because seems like after this last surgery
her face has changed more into that a 'little girl'
even though she is still my 'baby'. She's growing up.
: ( sniffle Overall she is a happy baby, unhappy only
when she is sick mainly...or Faith bugging her LOL

>Rachel's absolutely has daddy's traits in the heat
and sweat dept...they could practically have a sweat
contest on a hot day....hahahaha

Last year Genevieve dreaded that Playskool toyline
that blows air(highly recommend), after weekly
consistant "blow in the face' trials, we progressed to
the handheld mini fans that her fingers can stop the
miniblades and no problems plus she has the 'control'
and blows air into her own face now. Might work down
the road for ya... I read now that Jude uses the foamy
fans with Kam too LOL
 
Take Care Katrina hugs to Rachel : )






=====
~~Pamela~~
Mom to Savannah 15, Faith 5 and Genevieve 22 months
Partial Trisomy 5q
http://www.babiesonline.com/babies/g/gap2002/
http://www.ourhealthyhome.biz
http://ourhealthyhomewith.themomteam.com
 "You must be the change you wish to see in the world."--Gandhi 


        
                
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