I have to say that I worry about the same thing. I want to do the best by Seth
as possible, but I don't want to hinder him. At the same time, as he gets
older, I don't want to push him too hard and have him unhappy because of that
either. It's difficult because with Seth being so young still, we don't know
how much his CP will affect him. Currently, he's still learning better head
control and is not bearing weight on his legs. He has good range of motion so
far and his fine motor skills are pretty good. But there is a question about
his vision, speech is somewhat behind but because of his age, it's hard to tell
if there will be a real deficit there. It's so confusing.
I am glad to hear that you have some good people behind you.
Laura
________________________________
From: Sarah Haynes <[log in to unmask]>
To: [log in to unmask]
Sent: Fri, September 17, 2010 6:18:11 AM
Subject:
thank you for the vote of confidence. I landed the best job of my hotel
accounting career. they know about my situation and that i may have to leave
them, and yet still hired me. I'm sending every penny back to support katrina.
i'm just having a hard time not sinking into that depression hole during this
long wait.
Happily with a nice guilt ridden letter, the congressman is putting huge
pressure on the montreal consulate, as well as got us a pro bono lawyer who
filed the paperwork for us. so its just a waiting game now. the chances of
them denying me with a war vet husband and an american born daughter with cp are
small.
I do have a question for all of you though. I worry that I'll focus too much on
the cp and not enough on raising a healthy happy girl. All I want is for her to
be happy, and beleive she can acomplish anything she can. I don't want her to
think she's disabled, because she's already proven she's not. Any tips?
Sarah
--- On Thu, 9/16/10, Tamar Raine <[log in to unmask]> wrote:
> From: Tamar Raine <[log in to unmask]>
> Subject:
> To: [log in to unmask]
> Date: Thursday, September 16, 2010, 7:34 PM
> Sarah,
> You're doing awesomely in taking on the challenges. Things
> will soon be right
> again.
>
>
> Thanks,
> Tamar
>
> ~~~~~~~~
> When the power of love overcomes the love of power,
>
> the world will come to know peace.
> Check out my new blog!
>
> http://disabilityrightspetspoetryart.blogspot.com/
> [log in to unmask]
> http://www.zazzle.com/TamarMag*
>
>
>
>
>
> ________________________________
> From: Laura Mcintyre <[log in to unmask]>
> To: [log in to unmask]
> Sent: Thu, September 16, 2010 8:51:42 PM
> Subject:
>
> Thank you so much for sharing your story with me. I
> am so sorry to hear about
> your immigration problems and your difficulties accessing
> medical care and
> therapies. I can't imagine how much you miss her and
> how frustrated you must be
>
> by now. It sounds like she transitioned well into
> physical therapy and braces.
>
> She sounds like a very innovative little girl! That is
> wonderful that you have
> started to teach her sign language. That's not
> something I had thought of
> before, but I think I may start that. After I do a
> little homework though,
> lol. I wish you the very best of luck with your
> appeal. Do you have to have a
> hearing then? Do you have one scheduled yet? Is
> there anything I could do to
> help? I don't know if a letter or email to someone
> would help in any way, but
> if so I would be willing to send either. Just let me
> know. Thanks again,
>
> Laura
>
>
>
>
> ________________________________
> From: Sarah Haynes <[log in to unmask]>
> To: [log in to unmask]
> Sent: Thu, September 16, 2010 4:20:15 PM
> Subject:
>
> Its no problem, although my information is a little dated
> I'm afraid. Jon tells
>
> me she's doing wonderfully. Its a long story, lol.
>
> When I was pregnant I had gestational diabetes and
> preeclampsia. It was
> fustrating because I did everything the doctors told me
> from what to eat to full
>
> bed rest. We had alot of outside stress like my job
> trying to intentionally
> fire me for being pregnant and our insurance backing out on
> us when i was 8
> months along. It was fustrating because i tried to do
> everything the doctors
> said and still got steadily worse. I was in the
> hospital alot. I had
> contractions starting at 5 months, my blood pressure was
> high, I was in again at
>
> 7 months due to fever and dehydration. by the time i
> was 8 months i was in
> every week getting a stress test done on the baby.
> They pushed it as long as
> they could, trying to give her as much time as they could
> in the womb. But on
> new years eve i was sent to the hospital and told that if i
> got even a blood
> pressure point worse they would call the doctors in off
> their holidays. But I
> held and she was born at 12.39pm on
> january 2nd. My blood pressure got so high i wasn't
> allowed to hold her for the
>
> first twenty four hours because they were afraid i was
> going to seize. the
> night nurses let me anyways, with supervision.
>
> We have no family around us. and none of our friends
> have kids. So we're kind
> of on our own for the most part. We did start getting
> into crowds of friends
> who do have kids after the first year, lol.
>
> Katrina has a problem with her entire right side.
> When she started crawling at
> nine months I noticed how she would always lean, and try to
> avoid using that
> side. I mentioned it to the doctor and was told as
> long as she was crawling
> she's fine. I mentioned it again the next time we
> went to the doctor because
> she couldn't seem to do things like play patty cake.
> the whole clapping thing
> seemed beyond her. She started walking at 13 months
> but all she could seem to
> do with her right hand was hold it open. SHe tottered
> alot, always to the
> right. The breaking point was when she slipped in the
> tub. there wasn't enough
>
> water there to be a real danger, but she simply couldn't
> use her right arm to
> push herself up. in the time it took me to jump up
> she had rolled over and used
>
> her left hand.
>
> That was sorta my breaking point. Once again the
> doctor said she was fine so I
> went to a non-profit group that was recommended. They
> came out that week to
> evaluate her. Amanda was very nice, and after a while
> said she had to do two
> evaluations, one for katrina's right and one for the
> left. he left was on par,
> but her right side was definately deficient. Upon
> doing a simple stretching
> exercise with katrina she said there was definately lack of
> muscle tone, and
> signs of stiffening. She wanted katrina to see a
> neurologist, but our family
> doctor had to sign off on it.
>
>
> Happily when we went to him he basically said that I was
> with her more than he
> was and if i fent it necessary to look further in he would
> support it. Amanda
> had us into a neurologist that week. The neurologist
> took one look at katrina,
> did some simple stretches and said she was sure it was CP,
> and wanted a MRI. We
>
> had one the next week, as well as another neurologist
> appointment. Thats when
> they confirmed it. She said ti was mild, and we were
> catching it in the early
> stages. Her hopes were by the time Katrina went to
> school it would be barely
> noticable.
>
>
> She was in physical therapy and occupational therapy.
> WE had to use a special
> brace for her right hand. her thumb was stiffened in
> one position, and she
> couldn't turn her wrist. They had us talk to,
> honestly i just called him the
> sports doctor. He talked aobut using botox in her wrist,
> but as a last stage
> measure. So we stuck with using the brace at night,
> daily stretching of her
> hand, and weekly therapy. She still can't turn her
> wrist but her thumb now
> works ok.
>
>
> We also had to get a foot brace to stop her from walking on
> her toes. She
> didn't mind it at all. In fact she would bring it
> with her shoes to me when she
>
> wanted to go out.
>
>
> Of course then the fun happened with immigration. I'm
> canadian married to an
> american. I went to montreal to get my greencard,
> intending to be away from
> home for a week. instead i got told that we did the
> paperwork wrong i'm banned
> for ten years. after the inital panic attack i made
> my calls back home. I got
> Katrina and we went to stay with my mother in
> newfoundland. IT was wonderful to
>
> see my family. However no children's hospital.
> There was concern with her
> swallowing. and needing a new swallow study
> done.
>
>
> Jon got his income tax done and we had some money, so the
> plan was for katrina
> and i to fly back to vancouver, closer to him. get an
> appartment. once we got
> her medical taken care of id get a job. Dontcha love
> plans. Well we couldnt'
> get an appartment unless I had a job, i couldnt' get a job
> until katrina was
> seen to. Thus we ended up in a homeless
> shelter. I took katrina to a dozen
> evaluations and she got her swallowing study done.
> she can swallow, she is just
>
> not talking. Rather she is trying, alot, but cannot
> seem to form words or some
> base sounds. She is very very smart and just uses
> other ways to comunicate
> instead of talking. such as if she wants to go
> outside she'll take your hand
> and lead you to the door. if she's thirsty she brings
> you her sippy cup. We
> arrived in Vancouver in Feb, by May i got a letter saying
> she would begin intake
>
> maybe in 6-8 weeks. Mind you all this started in
> december and she was starting
> to regress with her
> hand, despite my constant efforts.
>
> So I made a heart breaking decision and sent her back to be
> with her daddy. He
> works graveyard shift security. He's a warvet working
> on getting VA benifits.
> So she's staying with friends while he works, and he takes
> her every second he
> gets. She isn't in physical therapy yet, still
> waiting. She doesn't need
> occupational any more. Her speech was evaluated at 18
> months, but she is
> progressing, mind you she's 30 months old. In the
> shelter we started sign
> language, and she's picked that up very quickly. she
> now knows more words in
> sign language than she can speak. Shes on the waiting
> list for speach therapy,
> and to see a hemitologist. They told me it was blood
> clot in the brain that
> caused her to have a stroke in the womb, so they want her
> to see a hemotologist
> to make sure blood clots are not going to be an
> issue. Unfortunately random
> blood clotting is in my family. My uncle almost died
> due to one.
>
>
> Right now we're evaluating where we are in the
> appeal. If its going to take
> longer we're going to send Katrina to be iwth his
> sister. We live in WA and she
>
> is in PA. However she used to be a kindergarden teacher and
> has connections with
>
> the right programs to help katrina. As well as has
> three kids, one only a year
> older than katrina. I am praying that the laywer's
> hopes are right and we'll
> hear within the next week or so. I desperately want
> to be home for halloween.
> I just wnat to hold her and know she is okay.
>
>
> As it stands now she is willingly trying to use her right
> hand before using the
> left. She can walk and run but tends to fall or run
> into alot of things. She
> loves to climb. The doctors said she has some spacial
> orientation issues, but
> gave us activities to help. She can say up to five
> words, sign almost ten and
> is very good at non verbal. She is very very good at
> problem solving, to the
> point of amazing a child neurologist in vancouver. My
> worry is every time we
> get on top of something, something hits us from the side
> that we had never
> considered. like watching her for seizures when I
> need to be conserned with
> blood clots. Or focusing on her hands when her speech
> falls behind.
>
> Sorry for the long story, and spelling mistakes. But
> there it all is. I don't
> know how two dark eyed, haired people got a blue eyed
> blond, but she is the best
>
> thing in our lives. She is always happy and so so
> smart. I miss her terribly.
>
> Sarah
>
> --- On Thu, 9/16/10, Laura Mcintyre <[log in to unmask]>
> wrote:
>
> > From: Laura Mcintyre <[log in to unmask]>
> > Subject:
> > To: [log in to unmask]
> > Date: Thursday, September 16, 2010, 4:02 AM
> > Hi Sarah. I'd like to ask you a few
> > questions, if I may concerning your
> > daughter. Feel free to tell me no, if you don't
> care to
> > answer. How does your
> > daughter's CP affect her? How was she
> diagnosed? Was
> > she premature or was
> > there other causes? What kind of therapies have
> you or
> > are you doing now.
> > Sorry, I know that's quite a few.
> >
> >
> >
> >
> >
> > ________________________________
> > From: Sarah Haynes <[log in to unmask]>
> > To: [log in to unmask]
> > Sent: Mon, September 13, 2010 3:19:03 PM
> > Subject:
> >
> > Hi Laura,
> >
> > I too am a parent of a child with cp. my
> daughter just
> > hit 30 months, although
> > she is not letting it slow her down in any way.
> She was
> > diagnosed when she was
> > 13 months.
> >
> >
> > Sarah
> >
> > --- On Mon, 9/13/10, Meir Weiss <[log in to unmask]>
> > wrote:
> >
> > > From: Meir Weiss <[log in to unmask]>
> > > Subject:
> > > To: [log in to unmask]
> > > Date: Monday, September 13, 2010, 4:48 AM
> > > http://www.cpparent.org/
> > >
> > > -----Original Message-----
> > > From: Cerebral Palsy List [mailto:[log in to unmask]]
> > > On Behalf Of
> > > Kathleen Salkin
> > > Sent: Monday, September 13, 2010 12:28 PM
> > > To: [log in to unmask]
> > > Subject:
> > >
> > > Hello, Laura,
> > >
> > > I'm Kat, list mum and a CP living and working in
> > NC.
> > > Feel free to post
> > > here. Most of us members are CP adults but
> there
> > are
> > > quite a few parents of
> > > CP kids here, too.
> > >
> > > There's a "sister" group for parents of CP kids
> which
> > I can
> > > never remember
> > > the details for, but I'm sure as always someone
> here
> > will
> > > be happy to point
> > > the way.
> > >
> > > Kat
> > >
> > > On Mon, Sep 13, 2010 at 12:13 PM, Laura Mcintyre
> > > <[log in to unmask]>wrote:
> > >
> > > -----------------------
> > >
> > > To change your mail settings or leave the
> C-PALSY
> > list, go
> > > here:
> > >
> > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> > >
> > >
> > > __________ Information from ESET NOD32
> Antivirus,
> > version
> > > of virus signature
> > > database 5447 (20100913) __________
> > >
> > > The message was checked by ESET NOD32 Antivirus.
> > >
> > > http://www.eset.com
> > >
> > >
> > >
> > > __________ Information from ESET NOD32
> Antivirus,
> > version
> > > of virus signature
> > > database 5447 (20100913) __________
> > >
> > > The message was checked by ESET NOD32 Antivirus.
> > >
> > > http://www.eset.com
> > >
> > >
> > > -----------------------
> > >
> > > To change your mail settings or leave the
> C-PALSY
> > list, go
> > > here:
> > >
> > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> > >
> >
> >
> >
> >
> > -----------------------
> >
> > To change your mail settings or leave the C-PALSY
> list, go
> > here:
> >
> > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> >
> >
> >
> >
> >
> > -----------------------
> >
> > To change your mail settings or leave the C-PALSY
> list, go
> > here:
> >
> > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> >
>
>
>
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go
> here:
>
> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
>
>
>
>
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go
> here:
>
> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
>
> -----------------------
>
> To change your mail settings or leave the C-PALSY list, go
> here:
>
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>
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