Re: [CEREBRAL PALSY CLUB] A poem I wrote for Hunter.
Thanks for such a wonderful poem, it brought tears to my eyes. Life is a struggle for our liitle angels but they really do keep on smiling. Take care.
Erin mom Of Katie 4, spastic diplegia
staci <flygirl_82us@...> wrote:
I thought you might enjoy this poem I wrote for Hunter and really all kids with any challenge like CP.
Might as well Smile
They see the plastic and the straps around you ankles
They look you over in all sorts of angles.
But I only see you boy. And your beautiful smile.
They wonder what happened and why you walk funny.
They wonder why you struggle up the steps when they are all running.
But you dont ask for my hand. You hold the rails and smile.
They wonder why God would let you be this way.
They wonder if they could ask him what he would say.
But you dont worry about such things.
They feel sorry that you dont have a normal life.
They wonder if you will ever have children and a wife.
But I dream of what your kids will be like. Will they have your Smile?
They dont see that everyone lives are full of trials.
We are all only here for a little while.
And one day we will all have perfect wings.
But for now we might as well smile.
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- --- In email@example.com, felicia gallo
>several years I haven't written an update on Amanda's progress, here
> Hi Group,
> I am here to give you an update on my daughter Amanda it has been
is her story.
>born. The doctors told me that Amanda had Cerebral Palsy. They said
> My journey began on June 19, 1998, when my daughter Amanda was
that she was very severe and had very extensive brain damage. Her
brain scan showed that she had virtually no cortex and the color SPECT
scan showed a devastating loss of the cortex. It also appeared that a
large segment of the brain was missing due to brain edema. Like any
parent I was in shock. I did not know what to do or where to turn.
>anything that she should be doing developmentally for the age of 9
> As the days and months passed by we noticed she was not doing
months. Her head and spine arched back and always stayed on the left
side with her head, and her eyes were always rolled up.
>noticed that her spascity was reduced, she was sleeping better, her
> At the age of 9 months Amanda started doing Hyperbaric Oxygen. We
nystagma was less and her vision improved. The next brain scan showed
that there was more blood flow to her brain. We did Hyperbaric Oxygen
for 1 year.
>Hyperbaric Oxygen. She still had her head arched back but it was
> Amanda had turned 2 years old and she was better since the
less. Her eyes would roll up less and her spasticity was less also.
However, she was still not able to walk, talk, smile, or suck her
bottle or look at us.
>I gave it a lot of thought about whether I should take Amanda or not,
> We heard about Embryonic Stem Cell Therapy and I was very excited.
and I decided I would give it a try since I had nothing to loose
because Amanda was already brain damaged enough. I followed my
instinct and my heart.
>Today Amanda is 8 years old and here are the changes we saw in the
> We started to do Stem Cell Therapy when Amanda was 2 years old.
last 6 years with doing Embryonic Stem Cells.
> Amanda was not able to suck her bottle at the age of 2 but she nowis able to suck her bottle and her sucking coordination came back.
Her eyes are more alive, alert and expressive. She now turns her head
and eyes to look at me when I call her but before there was no
response. Her hands are now more opened up too. The best thing that
I love now is she is able to give me a huge smile. For me that smile
means one million words! She is a lot more active and pays attention
to what is going on around her and she understands a lot more too.
> Amanda is now learning how to crawl, which is so amazing! She isable to stand up by herself for a few seconds. She wants to achieve
it so badly that she puts all her energy into trying. We have done
EEG'S and it has shown that her readings are much better. She is able
to express herself with a sad face and she babbles more. I noticed
she understand a lot more now they are periods that she does not eat
breakfast and when I tell her if you eat daddy will play with you,
within 10 minutes she is done her breakfast. At night she will call
me and let me know she wants to drink, and goes back to sleep after
her drinking this is a big step for her to call me, she is
understanding more and more. Her brain scan showed an increase in the
size of the cortex too. And now the best for last she mumbles "MAMA"
which is the best gift she could give me. We have gone for more stem
cells and Amanda is improving a lot on her babbling more new sounds
are coming out, she could go on
> for hours now and babble this is new for us. My husband alsonoticed when we ignore her now she will just look and say out loud
HEY, she also is learning how to sit on her own when doing therapy,
the therapist holds only her hands and the rest Amanda tries to
balance herself, I thank god everyday for giving her a chance to doing
Embryonic Stem Cells it has changed my life amazing and full of
happiness in my heart.
> That explains why she is my Angel, sent from heaven.her own with her therapist I will email.
> If you would like to see Amanda's video of her trying to sit on
> If I can help anyone please let me know. thank you.
> Felicia Gallo
> All new Yahoo! Mail -
> Get a sneak peak at messages with a handy reading pane.
> [Non-text portions of this message have been removed]
This is Lucy here all the way from Malaysia. I was really touched to
hear your story. I have a daughter too who was diagnosed as a CP at
aged 1. She is now 5 yrs and is still not able to stand and walk yet.
We have PT & OT sessions at the Hospital every week but I can't
afford to go out every week because I am working(in a private firm)
and it would be very inconvenient to go out every week. I was thinking
of leaving my job but then again it would definitely cause financial
strains at home if I stop working. My daughter Marvel can sit (wobbly
though) without support for about 15 minutes.
I agree with you Felicia that every mum's wish for their child is to
be able to see the first steps they take, the first words they say,
the first expression and response they give. We don't care how late
they are going to say their first word, their first step, etc so long
as we see improvements and results, right? Maybe for some, it a little
achievement but to us it is a BIG achievement. You are lucky that you
have therapy in your country such as Hyperbaric Oxygen and Embryonic
Stem Cell. Over here in Malaysia we do not have all those. We depend
soley on PT and OT. Even when we want to get sponsors to purchase
'special' custom made equipments for our special children here from
the Welfare Dept it take years for us to wait. And what more if we
were to purchase advance equipments such as what you have in your
country, it would definitely be TOO expensive for us. It is truly
heartbreaking when we want to help the best for our 'special' child
but just can't because of financial problem. Like yours my little
Marvel is also an angel to me, I love her very much especially when
seeing her smile everyday in spite of the 'cross' she's carrying. I
only pray and hope for a miracle one day that she would be able to
walk. By the way Felicia, how much did you pay for the Hyperbaric
Oxygen and Embryonic Stem Cell Therapy you did for Amanda? And for the
Embryonic Stem Cell Therapy, how is the process? Does she has to
undergo surgery or whatsoever? Is this process painful? I would love
to see the video of Amanda sitting. Pls. email to my address below :
Thank you and Keep in Touch