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
|
