----- Original Message -----

From: melissa bowen

To: BrainInjuredChild@yahoogroups.com

Sent: Saturday, November 10, 2007 9:37 PM

Subject: Re: [B.I.Child] Miranda suffered a tbi from a car accident

 

 

just wanted to let you know that Miranda  is  getting her first  umbilical cord stem cells on DEC 4Th  , 2007 .

these  stem cells are from live , healthy babies umbilical cord  , so no baby  will be harmed or  killed  to help  our little girl .

 

we are so excited .

praise JESUS

 

please pray !

GOD bless

Melissa >Blessed mom

Elaine Parker <elainerp@...> wrote:

Hi,

 

Has anyone done conductive education? This therapy is pretty unbelievable and the motions and exercises are done to the capabilities of the child. You can check out my website if you would like to see what it is. There are alot of centers who provide this therapy, which originated in Budapest Hungary. There belief is the children can learn how to function through repetitive movements and given an individualized program. It got my daughter walking and that's how much I know it helps, and why I opened a center!! Lots cheaper than the cages, etc also, and the parent is taught what to do, so it is an ongoing process. My daughters aides worked with my daughter after, hope this helps and it is another option.

 

Sincerely,
Elaine R. Parker, Director: CHT, EMT
Phone: (570) 421-3415
Fax:     (570) 421-9873
Email: support@...
Web:  www.thejennyrosecenter.com

  

----- Original Message -----

From: kvannett

To: BrainInjuredChild@yahoogroups.com

Sent: Saturday, May 20, 2006 5:58 AM

Subject: Re: [B.I.Child] son with cp

Oh Catherine! This is a dilemma that my husband and I have discussed
many times. Our physical therapist believes like Vivianne. That
allowing our children to make movements before they are ready will
damage their structure and create incorrect movement patterns in
their brains. So we have not done any of the things you are doing.
But Denis is almost 4 years old and still does not have head control
and sometimes I want to try something different. I discussed this
issue with a physical therapist we saw while on vacation in Florida
(we live in Europe). She explained to me that this is a big divide
within the therapeutic community. Some believe that the child must
progress step-by-step according to natural development (e.g. no
sitting before head control, no walking before crawling...) while
others believe that getting the child to just MOVE is the most
important. So please don't think your therapists are not
professionals. They probably just subscribe to "just move" theory,
that's all.

Vivianne has found success using ABR. Other parents are thrilled
with the results of suit therapy, etc... So how do you (we) decide
what is best for our child? This is my big complaint. There is
no "umbrella consultant" who will look at all the therapies and make
recommendations on which ones might best meet the unique needs of
our own children. It's up to us as parents to do that! My advice to
you would be to question your therapists about everything and try to
hear as many stories as you can from other parents about other
therapies. Then you just have to go with your gut and pray a lot!!
Good luck.

--Kasey, mother of Denis, 3.5 years
--- In BrainInjuredChild@yahoogroups.com, Catherine Nguyen
<cathy_tran@...> wrote:
>
> Hi,
> Thanks for your info. I will check into that. I guess
> we were just copying the therapies that CCS
> (california children services, a state program for
> disabled children) and Movement Discoveries (a suit
> therapy program) program. We did not create this
> program ourselves, but rather mimic the professional's
> therapy done at clinics.  So, I guess I'm worried
> because it seems if what you are saying is right, then
> the people treating my son Lukas do not know what they
> are doing and is actually hurting him rather than
> helping him.
>
> I guess I will check into this and confront these
> professionals about these therapies they are doing to
> him (which we are copying at home). I even told them
> we are doing that at home and they seem to think it's
> helping Lukas improve with weight bearing and taking
> his first walking motions. I guess these professionals
> aren't professionals afterall??
>
> I was told earlier on that jumping is good for
> vestibular and weight bearing. Some parents told me
> that they wished they had done it sooner, as to avoid
> back and hip and leg surgeries their children endured
> as a result of not having done enough weight bearing
> activities. Lukas is completely a different child now
> that he is moving and gaining so much strength...
>
> Anyone else doing suit/cage therapy can give me some
> suggestion and advice from your experience? Has it
> hurt your children and cause them to be worst off then
> they were supposed to.
>
> -catherine
> --- "Viviane , Micheal & Isabelle aziz"
> <bella@...> wrote:
>
> > hi friends
> > sorry for me not being so consistent in my
> > correspondence and not following
> > upwell . but i am sure you'''ll forgive me.
> >
> > i keep saving e-mails with the intention to reply
> > later, but god only knows
> > when later could be .
> > i had to answer this one though , i am not sure how
> > old is your soncatherine
> > , and how is he physically , but i like ot tell you
> > we did almost all you
> > are doing with him now on the institutes program ,
> > the jumping and walking
> > with isa suspended in an upright postion . like you
> > i was so proud and
> > enthousiastic about this program . isa would walk
> > and jump till she sweat
> > and she cried whenever we took her out .
> > unfortunatly isa's trunk was not
> > strong , and the way she walked and moved her legs
> > was very wrong not from
> > the sucket . of course our kids want more than
> > anything else to move , and
> > htey are smart so they will compensate the weakness
> > in some parts of their
> > body by using others , and the movement of the legs
> > bypassed the hips and
> > was initiated in her back , now that i do ABR i can
> > see that , she will move
> > twisting her whole pelvis left and right . with time
> > isa's legs started
> > turning in and crossing , and her rigidity increased
> > a lot in her limbs .
> > what will you expect a weak trunk and overdeveloped
> > leg muscles that will
> > pull the legs in all direction .
> > ABR aproach is to develop a good trunk to support
> > the limbs and build up the
> > core before youwork on external muscles .
> > believe me we are suffering now and struggling to
> > repair the effect of those
> > movements isa's body was not ready for .
> >
> > now if your son has good trunk control and can move
> > his legs the right way
> > only cannot keep an upright postion the device
> > providing him with support
> > can be ok .
> >
> > love
> > viviane
> > http://wwwhttp://www.snugglepie.com/cb/52040.png
> > ----- Original Message -----
> > From: "Catherine Nguyen" <cathy_tran@...>
> > To: <BrainInjuredChild@yahoogroups.com>
> > Sent: Thursday, May 18, 2006 5:45 PM
> > Subject: Re: [B.I.Child] son with cp
> >
> >
> > > Hi Nancey and Kasey,
> > >
> > > If there's any objections from other members, I
> > can
> > > email off list. Otherwise, I think it would
> > benefit
> > > everyone on the list if I respond through the
> > group.
> > >
> > > We first got the idea of the cage from taking
> > Lukas to
> > > Movement Discoveries (MD) in Burlingame,
> > California.
> > > They have a cage and suit therapy (and all kinds
> > of
> > > neat equipment) there. Although Lukas isn't ready
> > for
> > > suit therapy because he's still young (therapist
> > are
> > > worried about the joints not developing properly
> > if he
> > > gets the suit therapy too early... so we're gonna
> > hold
> > > off on that until he's closer to 3). I found out
> > that
> > > the cage and all the accessories MD has are
> > ordered
> > > from Suit Therapy LLC in Michigan. I checked
> > prices
> > > because Lukas was doing so well in it, I wanted
> > one in
> > > our home. Turns out, cage is $5500, accessories
> > $1500
> > > and the belt (to attached suspension cords) is
> > $250;
> > > including shipping to this and we're talking huge
> > > money. And we didn't even know if it would work in
> > our
> > > small house.
> > >
> > > Grandpa was on a mission. He decided to build
> > > something similar. We first though about getting
> > > Lukas's uncle (whose a welder) to weld some sturdy
> > > materials together. Then grandpa went to hold
> > depot
> > > and they sell those 6' by 6' fence pieces. The
> > fence
> > > already has the grid so you can hook stuff onto
> > it.
> > > You can buy as many as you want and assemble them
> > > together (assembly is so easy), and paint whatever
> > > color you want. We got 4 pieces (left, right,
> > back,
> > > and top). We formed a cube, except without the
> > bottom
> > > and front piece.  You need to be able to go into
> > the
> > > cage; and the bottom piece is not needed. They
> > grandpa
> > > bought a whole bunch of suspension cables from
> > > different places. We bought a belt from Becker
> > > Orthopedic (because it has a crotch part that the
> > suit
> > > belt doesn't... without the crotch part, the belt
> > will
> > > just slide all the way to Lukas's armpit when he
> > moves
> > > and jumps alot). We suspend Lukas by clipping the
> > > cords onto the belt and onto the cage. He jumps
> > all
> > > day long and does alot of weight bearing on his
> > own.
> > >
> > > We noticed he was jumping so much, it wasn't good
> > > either. So we bought a really cheap treadmill from
> > a
> > > few hundred bucks and slide that under his feet.
> > While
> > > suspended, we turn on the treadmill under his feet
> > and
> > > held him move his feet like walking. Over time he
> > will
> > > get used to the idea and start to walk on the
> > > treadmill on his own. When using the treadmill, we
> > > learned that we have to use a non-bouncing cable
> > > (similar seat belt straps) because we didn't want
> > > Lukas to bounce while walking. Initially, when we
> > were
> > > using the suspension cable over the treadmill, he
> > was
> > > bouncing while walking and we didn't like that.
> > >
> > >
> > > Anyways, sorry I can't send picks cuz my camera is
> > > broken. But basically it's like the cage from suit
> > > therapy except not as sleek and clean looking. But
> > it
> > > does the job really well. Next, we plan on getting
> > a
> > > table (like a massage table) and some small
> > sand/bean
> > > bags so we can do weight training for Lukas's legs
> > and
> > > arms.
> > >
> > > Hope this helps... sorry for the long email...
> > Hope
> > > everyone builds one for their child. Just the
> > weight
> > > bearing exercise alone is awesome cuz we all know
> > how
> > > important that is. At first he/she won't know to
> > jump.
> > > But once once you teach them, they can't get
> > enough.
> > > When Lukas hasn't jumped his fill, he gets really
> > mad
> > > and refuses to get out. We're thinking of putting
> > this
> > > together as a package and selling it locally and
> > on
> > > ebay to those who can't find materials or don't
> > have
> > > the time and energy to do it.
> > >
> > > God bless everyone!
> > >
> > > -Catherine
> > >
> > > --- kvannett <kcvannett@...> wrote:
> > >
> > > > Catherine,
> > > >
> > > > This cage sounds so very interesting. Is there
> > any
> > > > way you could e-
> > > > mail me a photo off list or post one in the
> > photo
> > > > section of the
> > > > group? (I don't get attachments that are sent to
> > the
> > > > group). I would
> > > > also love to show it to my husband to see if we
> > > > could make something
> > > > similar for Denis.
> > > >
> > > > Thanks so much!
> > > >
> > > > --Kasey, mother of Denis, 3.5 years
> > > >
> > > > --- In BrainInjuredChild@yahoogroups.com,
> > Catherine
> > > > Nguyen
> > > > <cathy_tran@> wrote:
> > > > >
> > > > > HI All,
> > > > > I just wanted to chime in... My son Lukas, 28
> > > > months
> > > > > old, suffered a severe brain injury at 1 year
> > of
> > > > age
> > > > > from an accident.
> > > > >
> > > > > He was in the hospital for 5 weeks and crying
> > > > alot. We
> > > > > had 3 people in our family who was in charge
> > of
> > > > > holding him. We basically held him 24/7.
> > Doctors
> > > > say
> > > > > brain injured kids go through agitation
> > phases.
> > > > They
> > > > > are confused and in chaos. Adults with brain
> > > > injury
> > > > > will be agressive, abusive, and swear alot.
> > Since
> > > > > children can't do this, they cry alot. So for
> > > > about
> > > > > 4-5 months, Lukas was crying non-stop whenever
> > he
> > > > was
> > > > > awake (and he was often awake at night tood!).
> > We
> > > > had
> > > > > 3 family members taking turns holding him (a
> > night
> > > > > shift, morning shift, and evening shift). We
> > are
> > > > glad
> > > > > we got the help. He is now 28 months and doing
> > > > > great... he's made slow, but good progress.
> > > > >
> > > > > Grandpa put together a gym for Lukas to play
> > in.
> > > > It's
> > > > > awesome and helps with weight bearing,
> > jumping,
> > > > and
> > > > > walking. Lukas can't support his own weight,
> > so we
> > > > > suspend him with tension cords in the cage. He
> > can
> > > > > still move, but he can't fall. Recently we put
> > a
> > > > > treadmill under his feet (while being held up
> > by
> > > > > suspension cords), he was doing walking
> > motions
> > > > with
> > > > > both legs/feet. When he's in the cage gym, he
> > > > laughs
> > > > > and screams in excitement alot... I think this
> > is
> > > > the
> > > > > best homemade product we've done for Lukas to
> > > > date.
> > > > >
> > > > > Good luck! Hope your little guy feels better
> > > > soon...
> > > > > he will, just give him time.
> > > > >
> > > > > --- Samantha Fernandez <pompomgirl99@>
> > wrote:
> > > > >
> > > > > > my daughter has everything your son has
> > except
> > > > > > seizures and she is tripelegia.Sometimes she
> > > > just
> > > > > > cries and wants us to rock her and hold her
> > > > close.We
> > > > > > have perkins and they said it has to do with
> > her
> > > > > > sight and feeling close to us.But I have
> > noticed
> > > > > > that if i stretch her she cries during it
> > but
> > > > not
> > > > > > after.I think it relieves her.I don't know
> > if
> > > > your
> > > > > > son is like this but when she wakes up she
> > is
> > > > like
> > > > > > in a ball, her muscles are so tight.I
> > stretch
> > > > her
> > > > > > and stretch her and she is still like that
> > after
> > > > > > like 2 hours of stretching she will relax.I
> > > > think it
> > > > > > might have to do with the tight muscles.or
> > like
> > > > > > perkins says maybe they just need the visual
> > > > input
> > > > > > of her parents alot for comfort.But i don't
> > know
> > > > how
> > > > > > much your son sees .Cammie can see faces and
> > > > large
> > > > > > objects.LShe also cried alot when she began
> > to
> > > > get
> > > > > > sight.she started out no tracking anything
> > then
> > > > as
> > > > > > months went by and us visually stimulating
> > her
> > > > she
> > > > > > got alot of sight .
> > > > > >
> > > >
> > > > > >
> > > >
> > > > > > Samantha
> > > > > > Lilian Ma <lilliputian9@> wrote:    Hi
> > > > > >   You didn't put down your name so I can't
> > > > address
> > > > > > you by name.
> > > > > >
> > > > > >   There can be many reasons your son is
> > crying
> > > > but
> > > > > > since he can be comforted by being held, so
> > I
> > > > don't
> > > > > > think his crying is caused by pain.  I have
> > a
> > > > friend
> > > > > > whose son is very similar to yours.  Mom was
> > > > > > exhausted from holding him so she tried
> > > > different
> > > > > > things.  Turned out he can be comforted by
> > > > listening
> > > > > > to piano music, or turning on a fun video
> > (even
> > > > thou
> > > > > > he can't see) (like Baby Mozart/Einstein).
> > So
> > > > > > suggest to your wife to try different things
> > so
> > > > as
> > > > > > to "relieve" herself a bit and not having to
> > > > carry
> > > > > > the baby all day, and to keep herself sane.
> > > > Also,
> > > > > > don't feel ashamed to ask for help...be it
> > > > family,
> > > > > > neighbour, members from local church.  There
> > are
> > > > > > many kind people that will offer help.  At
> > this
> > > > > > phase, it is extremely important that your
> > wife
> > > > gets
> > > > > > both the social, emotional, and physical
> > support
> > > > > > while you're away.
> > > > > >
> > > > > >   You are not alone and families who have
> > > > children
> > > > > > w/ CP CAN BE still very blessed and full of
> > joy.
> > > >
> > > > > > You and your wife are going through the
> > initial
> > > > > > phase of perplexity, uncertainty, denial,
> > > > depression
> > > > > > and we've been there too.  What helps me go
> > > > through
> > > > > > this phase is when a friend of mine asked me
> > > > this
> > > > > > question: "What's the worst case scenario?
> > Can't
> > > > > > walk? Can't talk? Can't eat? Can't think
> > > > straight?"
> > > > > > When I think about it, it dawns on me that
> > no
> > > > matter
> > > > > > what kind of disabilities my son has, he is
> > > > still my
> > > > > > son.  What's important is that I am blessed
> > > > enough
> > > > > > to be able to hold him in my arms and watch
> > him
> > > > grow
> > > > > > and help him reach his fullest potential.
> > > > > >
> > > > > >   There are also many programs and
> > techniques
> > > > out
> > > > > > there that can potentially help your child.
> > The
> > > > > > earlier you starts intervention the better
> > and
> > > > you
> > > > > > can learn a lot in this group.
> > > > > >
> > > > > >    So please hang in there and I'm sure more
> > > > parents
> > > > > > in this group will offer you some advice and
> > > > > > support.  I will remember you family in my
> > > > prayers.
> > > > > >
> > > > > >   In God
> > > > > >   Lilian
> > > > > >
> > > > > > ask me <lesbokty@> wrote:
> > > > > >   my son has CP, spastic quadripelegia
> > cerebral
> > > > > > palsy, he is cortically
> > > > > > blind, and has seizure disorder. he is 17
> > months
> > > > old
> > > > > > and we have had a
> > > > > > rough time with him. I am his dad. I am in
> > the
> > > > army
> > > > > > and here lately he
> > > > > > has been crying a lot. I just came back from
> > a
> > > > two
> > > > > > week long school.
> > > > > > The only time he is not crying is when we
> > hold
> > > > him.
> > > > > > I dont understand,
> > > > > > and dont know if i should let him cry some,
> > plus
> > > > it
> > > > > > is very hard on my
> > > > > > wife doing it by herself, when i called her
> > > > while i
> > > > > > was at school she
> > > > > > just cried and cried what can we do? and is
> > it
> > > > > > normal for him to cry
> > > > > > like he does???? Is he hurting? the doctors
> > just
> > > > > > keep saying there is
> > > > > > nothing else wrong except what we all ready
> > > > know????
> > > > > > PLEASE HELP.
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
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