I just had to chime in regarding the potty training issue. My 6 year old
does not have cp or any other diagnosis and he still wears a pull-up at
night. It has been a hard road to get him independent with the whole potty
thing. Your frustration is totally understandable...it just takes time. I
work with many kids who have cp, autism, and down's syndrome who are simply
a little later losing the diapers or pull-ups. In my experience, this does
happen, although maybe not completely until they are grade school age. I
was appalled to hear about the nanny and the paramedic. It is so
disheartening to hear about people, especially in the medical field, being
so uncaring. There are still some of us out there who cherish your
children. I hope you run across them often.
God bless,
Nikki COTA


>From: "temp_mom" <temp_mom@...>
>Reply-To: cerebral_palsy_support@yahoogroups.com
>To: cerebral_palsy_support@yahoogroups.com
>Subject: [cerebral_palsy_support] Re: Newly Diagnosed
>Date: Thu, 06 Jul 2006 10:01:22 -0000
>
>Elizabeth I posted pics of Moriah if you would like to see my
>miricle baby--- In cerebral_palsy_support@yahoogroups.com, Elizabeth
>Brody <ebrody@...> wrote:
> >
> > Hi, We are hanging in. Our live in nanny was shaking Rex and we
>caught
> > it on tape last week. We called the Sheriff, who is not going to
>press
> > criminal charges, too hard to prove criminal intent. It could be
>the
> > cause of some of his regression and delays, but we can't prove
> > anything. I want to scream, but can't. The good thing is that
>she is
> > gone, he has Dave and I and is loving all the attention.
> > Rex gets PT, OT, and will begin Speech. They are going to do a
>swallow
> > study soon too. His water therapy is motivating him to move
>towards
> > toys we put just out of his reach or by passing him back and forth
> > between us. We also hold his sacrum and lower back at the pelvis
>while
> > he is on his back and gently rock him to help his back and neck
>loosen
> > up. Massage for your daughter can't hurt and may help loosen her
>up, it
> > really relaxes Rex and he falls into a deep restful sleep every
>time.
> > He gets all over body massage and some head massage called cranial
> > sacral. Rex will be 16 months on the 4th, he can be demanding
>too. He
> > is starting to imitate us and roll the ball back to us, so his
>cognitive
> > thinking is beginning to kick in finally. Our appointments at
>Stanford
> > are 2 weeks away, wish us luck!
> > How are things with Moriah?
> >
> > temp_mom wrote:
> >
> > > Hi Elizabeth how you doing this fine HOT morning?Moriah is doing
> > > wellhad to have new AFO's because she grew out of her's in less
>than
> > > 3 months.She has pt and speech only. but im very intrested in the
> > > water therapy. we are getting a pool this week is it something we
> > > can do or does it have to be a profesional? I have a friend that
>ia
> > > a massage therpist for adults or would it matter? You mentioned
>oid
> > > what kind? sorry so many questions Lol but if it works for you
>maybe
> > > it will for Moriah.How old is Rex now Mriah is 20 months and is a
> > > pistol. she is a little delayed but is ver smart they say she is
> > > fine no MR . but we have some woor to do .look forw
> > >
> > > --- In cerebral_palsy_support@yahoogroups.com
> > > <mailto:cerebral_palsy_support%40yahoogroups.com>, Elizabeth
>Brody
> > > <ebrody@> wrote:
> > > >
> > > > Hi, No he doesn't scissor his legs or stand on his tip toes. He
> > > puts
> > > > most of his weight on his heels actually. I started taking him
>to
> > > a
> > > > message therapist this week who also does cranial sacral. We
>saw
> > > an
> > > > actual release of his neck muscles when she did this that
> > > lengthened his
> > > > neck then he slept very sound. We are also doing a ton of water
> > > therapy
> > > > and added some essential oil use to his routine. We only work
> > > with him
> > > > while he is comfortable with what we are doing, so far he
>enjoys
> > > all of
> > > > these additional therapies. He is now getting 3 physical
>therapy
> > > > sessions a week too. How is your daughter doing? Have you tried
> > > water
> > > > therapy? It seems to have made significant and quick
>improvement
> > > for Rex.
> > > >
> > > >
> > > > temp_mom wrote:
> > > >
> > > > > --- In cerebral_palsy_support@yahoogroups.com
> > > <mailto:cerebral_palsy_support%40yahoogroups.com>
> > > > > <mailto:cerebral_palsy_support%40yahoogroups.com>, Elizabeth
> > > Brody
> > > > > <ebrody@> wrote:
> > > > > >
> > > > > >Wonderful news Elizabeth. You know all we have is faith and
> > > > > hope.Does REx sissor with his legs? Moriah does and tipie
>toes so
> > > > > when we get the feet flat she will be off.I"l keep praying,
>And
> > > > > remember speek positives over your son and let no one else
> > > either.
> > > > > He is going to do great!!!!!!!Thank you for the words of
> > > > > encouragement, it means a lot. I have an
> > > > > > update about our son Rex. He has been well for a couple
>weeks
> > > now
> > > > > and
> > > > > > is starting to army crawl, bear weight on his arms, stand
> > > leaning
> > > > > on
> > > > > > things for minutes straight, he pulls himself up with only
>a
> > > > > little help
> > > > > > for balance. He will even take steps if we urge him while
>we
> > > hold
> > > > > him.
> > > > > > It looks like he will walk! His therapists are not
>convinced he
> > > > > has CP
> > > > > > or mental retardation. He does not fit with what they know
> > > about
> > > > > either
> > > > > > and they have 50 years experience between the two of them.
>A
> > > new
> > > > > > neurologist saw him, spent over two hours with him and did
>not
> > > > > think he
> > > > > > has CP either. The original diagnosis was given after a 5
> > > minute
> > > > > exam.
> > > > > > The new doctor said he is at high risk for mental
>retardation
> > > due
> > > > > to his
> > > > > > head size. We will not know about this for sure until he
>is 5-6
> > > > > years
> > > > > > old and can take IQ tests. So even though he is still
>delayed
> > > > > things
> > > > > > look more positive than they did a couple weeks ago.
> > > > > >
> > > > > > temp_mom wrote:
> > > > > >
> > > > > > > --- In cerebral_palsy_support@yahoogroups.com
> > > <mailto:cerebral_palsy_support%40yahoogroups.com>
> > > > > <mailto:cerebral_palsy_support%40yahoogroups.com>
> > > > > > > <mailto:cerebral_palsy_support%
>40yahoogroups.com>, "rex_mom"
> > > > > > > <ebrody@> wrote:
> > > > > > > >HI.My daughter was born at 26 weeks, she had a lot of
> > > things to
> > > > > > > over come she had a stage 3 brain bleed , a pda ligation
>on
> > > her
> > > > > > > heart, hydrosfolic. subgaleal shunt, and we were told she
> > > would
> > > > > > > never funtion normally.At 13 months we were told she had
> > > cp.we
> > > > > were
> > > > > > > in total shock.BUT!!!! by the grace of God she is doing
> > > great NO
> > > > > > > mental retardition. she is a little behind but is doing
>well
> > > she
> > > > > can
> > > > > > > crawl and walk around everything holding on, we hope she
>will
> > > > > walk
> > > > > > > soon.What Im get around to is The Drs told us the same
>thing,
> > > > > gloom
> > > > > > > and doom!! and look were she is now at 20 months .They
>can
> > > say
> > > > > > > anything but the truth is that they just DON't know how
> > > things
> > > > > will
> > > > > > > turn out.Honey we love these kids no matter what and we
>all
> > > as
> > > > > > > parents will do what ever we have to to help these gifts
>from
> > > > > > > God.Have Faith and don't give up and find time each day
>for a
> > > > > > > breather even a very short one it will help you cope with
> > > > > > > everything.Rember your little one will be the best she
>can be
> > > > > what
> > > > > > > ever that is for her or him. Take care and know you are
>not
> > > > > alone.
> > > > > > > > Hi,
> > > > > > > > We got hit with the dagnosis of Hypotonia Cerebral
>Palsy
> > > today
> > > > > for
> > > > > > > our
> > > > > > > > 14 month old, Rex. It's the first we heard this was a
> > > > > possibility
> > > > > > > even
> > > > > > > > though we knew he had low tone. He's been in Early
> > > Intervention
> > > > > > > > services since he was 3 months. Have any others
>children
> > > been
> > > > > > > > diagnosed this early? What tests were run first? Does
> > > anyone
> > > > > know
> > > > > > > > how we can determine how severe it will be for him and
>when
> > > > > we'll
> > > > > > > know
> > > > > > > > this? Do any others have retardation as well, the
>doctor
> > > > > mentioned
> > > > > > > > this as a possibility? Anything you can share would be
> > > > > > > appreciated.
> > > > > > > > I am scared of the unknown, and that is all there is
>right
> > > now
> > > > > for
> > > > > > > me,
> > > > > > > > too many questions and not any answers. The doctor was
> > > vague
> > > > > > > except
> > > > > > > > to paint a doom and gloom picture. He told us Rex
>would be
> > > > > > > dependant
> > > > > > > > for life and most likely retarded too. I'm going to
>get a
> > > > > second
> > > > > > > > opinion, so anything you can tell me will help when I
>meet
> > > > > with the
> > > > > > > > new doctor. What should I look for? What should I ask
>the
> > > > > > > doctor?
> > > > > > > > Are there any tests I need to have done? He's had an
>MRI
> > > and
> > > > > EEG,
> > > > > > > > both normal. Thanks for your input.
> > > > > > > > Elizabeth
> > > > > > > >
> > > > > > >
> > > > > > >
> > > > > >
> > > > >
> > > > >
> > > >
> > >
> > >
> >
>
>
>
>
>