This page contains guestbook messages I received between 2002 and 2004. My guestbook previous to this got lost in an upgrade so please accept my apologies if your message is not here.
Date:
07 May 2002
Time:
00:25:20
Remote
User:
Comments
Hey there, great site, keep up
the good work. Jamie, mum of Alex 3.
Date:
09 May 2002
Time:
06:36:41
Remote
User:
Comments
Hey Nicolette! Great site! I
live in Missouri, USA, and came across this site doing a search for CP in
general! My daughter is Brooke, she's 11, and has CP w/ Spastic Deplegia. She
had a Selective Dorsal Rhizotomy at age 3 that greatly helped w/ her spasticity.
She had is done at Children's Hospital in St Louis, MO, by Dr T.S. Park. Do a
search on it...it has helped her SOOO much! Anyway, she still walks with a
walker, but CAN walk without it. She has become too dependent on it, so now we
are working on building her confidence up to only using a cane. Sorry so
long...but nice to read about others that have 'been there'! Thanks! Teresa
Teresa Thanks for your
message, hope you stop by again so I can contact you. Keisha has just had a
tendon stretch two days ago following one last month - she is nicely down on the
ground now, so we just have to build up her strength!
Nice to hear from you!
Nicolette
Date:
07 Jun 2002
Time:
21:11:14
Remote
User:
Comments
Hi Nicolette, thanks for all
the information u gave me the other day and for letting me meet your daughter
she is a beautiful little girl and no doubt di told u that i fell in love with
her!!! I will regulaly check on your site and will let you know how we get on at
the appointment with the neurologist. I have spoken to my peadiatrician who told
me that she thinks Alysha does have cp and i must say i am pretty convinced
myself but we now have a 5 week wait to find out for definate!! Will contact u
soon take care ...... trude xxxxxx
Hi Trude, it was good to
meet you all too. You have a lovely family. Good luck with everything. If you
stop by again let me have your e-mail address and let me know how both
your little ones are getting along - especially Alysha.
Date:
11 Jun 2002
Time:
11:39:06
Remote
User:
Comments
Nicolette, I am so glad I found
your site. I can't believe how much practical info is here in one place. Thank
you so much. Janet - will re-visit soon.
Thank you!
Date:
11 Jun 2002
Time:
14:09:17
Remote
User:
Comments
Dear NicolettMy name is Jo and
my sons name is Adam, we met at the hospital when your daughter was having her
cast changed, and you took some photos of Adam we have only just managed to get
to a computor if you have still got the pictures, ould you put them on the web
site again, as we missed them before. best wishes Jo and Mark and Adam.
Hi Jo I haven't had a chance
to put the pics up yet as my computer wasn't working until only recently! send
me an e-mail so I have your e-mail address and we can keep in touch and you can
let me know how Adam is getting on. I have so much work to do on this site and
so many new pics to put on I don't know when I'll have the time to do it! But
I'll get onto it soon. Once the pictures of you and Adam are on, I won't be
taking them off so you haven't missed anything and if you e-mail me his story I
can put it up like the one I have of little Joshua. Look forward to hearing from
you, and thanks for visiting. Nicolette
Jo - if you come back again
- please read my message a bit further on - disaster struck!
Date:
05 Jul 2002
Time:
13:10:01
Remote
User:
Comments
Hi, I know a fair few people
with CP in varying degrees. One young woman had a number of operations in her
early teens to "straighten" her leg. There was a certain realignment
of her limb ( she has hemoplegia) but the excruciating pain she went thru was
not worth it. Many parents put their kids through all sorts of
"treatments", but at the end of the day there is no "cure"
for CP. Bringing up your children with a positive view of disability will, in
the future have a more rewarding effect on their lives than trying to
"normalise" them. CP is a neurological condition, but with the best
will in the world the medical profession don't hold all the answers. Again, from
friends, the health care professionals CAN be some of the most ignorant people
when it comes to disability in general (but not always). There is a site, run in
part by a person known to me, called "Wild Women on Wheels" I believe
it is a community on either MSN or yahoo. I can't recall if it has any capital
letters in the title, so if you don't get through first time round try with
different case settings. The people on the site subscribe to the social model of
disability, and at least one of the site managers has CP- a feisty young woman
who is going to make waves. My knowledge of CP is limited to a fairly small
number of people, but I do know a chap who's son (about Keishia's age) was
formally diagnosed with CP, something I and other friends had been certain of
for much longer. Hopefully, with the support of mutual friends, he can bring the
boy up with the knowledge that a disability is not necessarily a bar to leading
a rewarding and fulfilling life. Keishia is a lovely wee girl, and I'm sure
she'll be a cracking young lady. I know you'll give her all the love and support
she needs (you can't hide being a good parent). I wish I had more time to
explore your site, and all of the links fully, but please do visit wild women on
wheels, I'm sure you'll find a role model for your wee girl. Take care
Nicolette, God bless you and Keishia. Bye for now, John.
Hey John - e-mailed you - as
you already know! Thanks for your info and advice - N.
Date:
07 Jul 2002
Time:
23:28:56
Remote
User:
Comments
What a truely wonderful site,
thankyou so much Nicolette. My daughter has just been diagnosed with CP she is 3
and half. I need to know more and have found everything I need to know on your
site, I have book marked it as a source of reference, and support. once again a
BIG BIG BIG thankyou for sharing all your experiences info and love Sammi x
Date:
10 Jul 2002
Time:
19:02:27
Remote
User:
Comments
Janet, thanks for your
comments, I am glad you have found the site useful. Sammi, ditto to you too! I
still have pictures to put up of Keisha's recent ops, but I've suddenly found a
passion for gardening and there aren't enough hours in the day to do all I need
to do! John, I thanks for your message. I will certainly check the group out,
although I have my own community on MSN that I am starting to build up! Thanks
to all of you. Nicolette
Date:
10 Aug 2002
Time:
21:12:33
Remote
User:
Comments
thanks Nicolette for your story
and all your hard work in putting this together! Does anyone know anything about
botox injections - my daughter Rachel is 2 and 2 months and we have been
recommended to have botox to help the physios work on her hamstrings and calf
muscles. I'm looking for anyone with any experience of this thanks Anna
Anna Much of the feedback
I've had on Botox is good. I was against it for Keisha and opted for casting
which meant her having plaster casts on for approximately 6 weeks. But once they
were removed we could see that she had blistered very badly. She was in a lot of
pain and I've now decided that next time she will have Botox. I will find out
more and put the info up. I'm lagging severely with updates at the moment
because there is so much to do! As a single parent working full time - there
just aren't enough hours in the day! (use the home page to e-mail me from).
Date:
25 Aug 2002
Time:
21:41:22
Remote
User:
Comments
Mum your web is great and I
think it will be a lot of help to other people from Nicolette's eldest daughter
Aisha
Date:
23 Sep 2002
Time:
11:29:31
Remote
User:
Comments
All I can say is THANK YOU.
Without this site I would have been lost. Angela
Thank you. I want this
site to be as helpful as possible
Date:
30 Sep 2002
Time:
21:22:52
Remote
User:
Comments
Hi Keisha Your friend Courtney
visited your site and was happy to see her friend from school on the computer
screen. She hopes you had a nice birthday party!! See you at school....bye bye!
Date:
02 Oct 2002
Time:
22:24:26
Remote
User:
Comments
hi fiona here my daughter also
has spastic deplegia and has had botuilium injections and surgery for lenghening
of calf muscles. shauna is doing brilliantly and progressing fast
Hi Fiona - Thanks for your
message - perhaps you might e-mail me with a picture to put on the our stories
page? Keisha is about to have her first Botox injections in December and at the
same time, lengthening to her Achilles! I keep faith... Nicolette
Date:
24 Nov 2002
Time:
15:48:19
Remote
User:
Comments
i am trying to find your site
whats to read the story whats the web site
Any of the links at the left
will take you to the rest of the site - take care...
Date:
08 Jan 2003
Time:
20:16:30
Remote
User:
Comments
Jo/Mark & Adam
Unfortunately something has happened to the pictures taken at the hospital
because of a problem with my computer and I no longer have them. I'd be really
happy to visit you and take some more if you'd like me to. I'm really sorry
about it, please contact me again - I don't have your e-mail address.
Date:
17 Feb 2003
Time:
10:47:26
Remote
User:
Comments
Hi I can't believe the info
here. thank you.
Date:
21 Feb 2003
Time:
22:47:12
Remote
User:
Comments
Hi Nikkie, your site is
brilliant. I'm so proud of you, I know it's been very hard for you, I admire
your strength and courage. I know my little Keisha is a strong and happy little
girl, and I love her so much and my Aisha. Nikkie I'm always here for you, love
you your cus Jean & Natasaha, and Shanice. love you all xxx
Date:
26 Feb 2003
Time:
19:17:12
Remote
User:
Comments
Nice to se the web site in such
robust health... LKG
Lance - thanks!
Date:
27 Feb 2003
Time:
15:08:15
Remote
User:
Comments
I thought the story was very
interesting and i would like more information about cerebral palsy.
I'm afraid I am unable to
contact you - could you send me an e-mail using the links at the left?
Date:
11 Mar 2003
Time:
11:58:55
Remote
User:
Comments
I'd just like to say I happened
upon yr website...and its tops.... just when ordinary peeps like me think the
worlds on top of my shoulders here comes the mum with a mission....u deserve an
award... PS...I've got six of my own and knowing how much children like
interactive technology wondered whether some types of games, puzzles, etc could
be included on a kids for kids link of the side to not only create a medium to
share experiences but also to educate siblings and peers.
Hi - I've been thinking
about a children's page and have been trying to get my eldest involved - but
technology isn't her thing - unless its chatting to her school friends on MSN. I
really don't have much time, but what I will do at some point is link to some
other sites designed for siblings - I just have to find them first! I'm glad I
could have been of help in some way - I know how much I needed help when my
daughter was diagnosed and it wasn't a nice position to be in - first they tear
your world apart and then just leave you to get on with it! Thank you for your
kind comments. Nicolette
T1:
wbra0831ML1@access-k12.org
Date:
31 Mar 2003
Time:
15:08:38
Remote
User:
Comments
I will be getting married to a
person w/ CP and it is hard him because people say that he can't do things
himself and that he is to slow for college so the college he applied for turned
him down because he was to slow but to me he's the love of my life and even
thought we may have disagrments but we always work it out because that's what
couples do and I love him very much and I can't live out him. My name is Mary if
you want to send me an E-mail my address is wbra0831ML1@access-k12.org let me
know what you think and if you have any tips for me.
Have e-mailed you separately
- hope it was useful - Nicolette
T1:
ronald.rosser@btopenworld.com
Date:
02 Apr 2003
Time:
23:13:18
Remote
User:
Comments
Dear sir or madam how do I get
hold of pads thats on this page and how much do they cost
Ronald - I hope you found
the information I e-mailed you helpful. Nicolette
T1:
miss_bliss_xx@yahoo.co.uk
Date:
04 Apr 2003
Time:
14:12:05
Remote
User:
Comments
Hello, Just to say I stoped by,
you have some really interesting stories here. {there should be more sites like
this} When I have more time I will try to spend a good hour. Keep up the good!!
Tricia
Tricia - thank you!
T1:
louisehyde2001@hotmail.com
Date:
12 Apr 2003
Time:
19:53:59
Remote
User:
Comments
A very informative site, and a
lovely little girl! I have emailed you separately to ask your advice, I hope you
don't mind. Louise Hyde, mum of 4, youngest with cp (aged 2).
Louise - no, don't mind at
all - glad to help in anyway I can!
T1:
Date:
25 Apr 2003
Time:
13:18:21
Remote
User:
Comments
Great website. I'm concerned a
friend's baby may have cp - unable to swallow, poor sleep, poor eye control. I'm
trying to find out as much info as possible so I can be there to help if needed!
The personal stories were really helpful, especially the guy with the degree in
stats. Loved his poem! Good luck to you and Keisha and thanks again.
Thank you - I hope your
friend gets the answers she needs - sometimes it can take a long time. I'll pass
your comments on to Lance - I'm sure he'll be pleased - Nicolette
T1:
barakath2@hotmail.com
Date:
25 Apr 2003
Time:
18:04:37
Remote
User:
Comments
this is a very good site to get
available information which are very needed to make confidence to the parents.
barakath-physio
Thank you
T1:
claire.windle@ntlworld.com
Date:
14 May 2003
Time:
14:23:23
Remote
User:
Comments
What a brilliant sight! When my
son could not stand on flat feet at 18 months I was told by my GP to wait a year
or so and see how he got along. I ignored his advice and pursued several other
routes - my son was diagnosed with CP within weeks. He also had botox injections
and I empathise with your experience, we were given little information, and
worse, little access to the people who could give us that information. Keep up
the good work!
Thank you it's always
good to have feedback - especially positive feedback!
T1:
sharon@cssltd .biz
Date:
23 May 2003
Time:
10:20:47
Remote
User:
Comments
i loved this site full of
useful information keep up the good work well done Sharon mum to Ashley and 3
others
Thank you Sharon - you sound
as though you also have your work cut out for you!!
T1:
Stressedout51@hotmail.com
Date:
24 May 2003
Time:
11:41:56
Remote
User:
Comments
I just wanted to encourage you.
What a great site - I teach children with severe learning difficulties and CP -
I'll recommend it to our parents. I'll leave my e mail but please don't feel you
have to reply I know you must be very busy. Carole
Hi Carole - thanks for your
words of encouragement - if there was anything you felt able to contribute, I'd
be more than grateful! Nicolette
T1:
Date:
25 May 2003
Time:
21:27:21
Remote
User:
Comments
I have recommended your website
to quite a few people, I hope they have visited and left a message Love
grannymum
Hey Mum - thanks. Kingston
Hospital put a few of those flyers up that you put in the Child Health clinic!
T1:
vwpirates@tiscali.co.uk
Date:
17 Jun 2003
Time:
21:55:16
Remote
User:
Comments
This was excellent for me to
read as my little boy is having botox on 14th July, he's 2 and a half and
diplegic, its lovely to read about positive experiences, So glad your little
girl is up on her feet
Thank you - I hope all goes
well for your little boy - as far as I've heard and experienced Botox gives them
a new opportunity. Keisha will have to have some more very shortly as she is
starting to stiffen up in her knees, but nothing like before - Good luck!
Nicolette
T1:
alyson@smith1257.fsnet.co.uk
Date:
18 Jun 2003
Time:
00:32:12
Remote
User:
Comments
Great site, nothing like this
was available when my daughter Sarah was diagnosed at 9 months old in 1984. She
is just in the middle of her A levels and off to University in September. Sarah
has spastic diplegia but her hands are slightly affected as well. From your
discussion room I am saddened to see that mothers are still being called
neurotic when they can quite plainly see that something is wrong with their
child. It has been a tremendous struggle to try and get help throughout Sarah's
education as she is very good at hiding her physical problems. She has also had
the added burden of being educated through the medium of Welsh as the only
school without stairs and therefore the designated school for all disabled
children on Anglesey only teaches through her second language Welsh. So to all
those parents out there never give up because your kids will astonish you so
keep on fighting for them. Sarah has been promised the moon from the LEA but has
received nothing, her assessments by an Educational Psychologist did not pick up
her problem with assimilating written information until 2 months before her
GCSE's too late to request a reader for her exams. She still managed to gain 10
c and above grades in them much to the shock of the staff who had told her she
could re-take the year if she failed them - great confidence booster!!!! To end
this story on a happy note Sarah has been assessed by Bangor University's Access
Centre and they have made a report out to equip her with an ergonomic chair
every kind of computer and scanners to read books outloud to her so her life
will be much easier at University. All children should be given the tools they
need to achieve their full potential whatever, that may be.
Thanks for the comments
Alyson - you are so right about full potential - everyone has that right. When I
have a little more time I will e-mail you - have just finished my exams for this
year (on 19th June!) at the moment I'm playing catch up with things I've let
slip! Nicolette
T1:
jmjost@gigermd.com
Date:
25 Jul 2003
Time:
10:24:45
Remote
User:
Comments
Dear Sir or Madam With the
GIGER MDŽ Therapy Instruments you treat successfully neurological diseases and
injuries such as cerebral palsy. Please view our website: www.cp-hotline.com
T1:
Date:
22 Aug 2003
Time:
17:01:38
Remote
User:
Comments
Hi, thought I would have a peep
at what you are up to. You should be very proud of your acheivements with your
lovely daughter. You are doing marvels. And she looks so happy. No wonder you
are taking the queens shilling and moving on. Got to get priorities right, and
you obviously have. Best of luck - be happy. And you have my e-mail address if
you fancy a natter. I know how things can get a bit low at times and a friendly
ear is sometimes a welcome diversion. Bob T from BT
T1:
edenbridalwear@hotmail.com
Date:
24 Aug 2003
Time:
02:23:16
Remote
User:
Comments
Hi.My name is Fiona and I live
in Edinburgh. My daughter turned 3 on 31st July this year and on 25th June I was
told that she could possibly have CP but because it is not something they can
diagnose very easily they cannot be 100% sure.They are going to give her
treatment as a CP sufferer.I had a very difficult pregnancy with her and nearly
lost her 3 times.The first at 22 weeks when my waters broke and then again at 29
weeks and 33 weeks when I went into prem labour.They said that since I lost a
lot of fluid when my waters broke that her developement could have been
restricted resulting in CP.Since she was born she has suffered from severe pain
when having a bowel movement.I was always told that she would grow out of it.Her
eating habits are poor.She does not have a great appetite and does not enjoy
eating.I don't know if this is a side effect from CP or not? I also wanted to
ask you if CP sufferers are prone to skin disorders? She was referred to a
dermotologist as she has a huge area of marked skin down the left hand side of
her body.(it is really ugly)The professor of dermotology had never seen anything
like this before and said it could only be a birth mark?? but it is spreading
all the time. I would greatly appreciate any info you could give me.I really
don't know anything about CP and need to get clued up on it so I can help my
daughter through this. Many thanx Fiona
T1:
Date:
27 Aug 2003
Time:
15:13:33
Remote
User:
Comments
great website mum, from your
daughter aisha p.s I love the picture of me
T1:
Date:
29 Aug 2003
Time:
12:28:02
Remote
User:
Comments
Hi Nicolette, just a quick note
to say I've had a look at the site and read all about Keisha although you have
updated us all at work from time to time. I'll continue to visit the site and
have book marked it for future reference. Don't be a stranger. Lots of love to
the family. Vee
T1:
Date:
29 Aug 2003
Time:
13:34:33
Remote
User:
Comments
Great site Nicolette! All the
best for you and your daughter in the future. Archie Glen Connect Scotland
T1:
idnobell@lycos.co.uk
Date:
06 Sep 2003
Time:
02:24:18
Remote
User:
Comments
Hi Nicolette, its me ID we meet
at Maplin Electronics 2day, hope u do remember me now? Well I visited your site
and it's quite informative but to tell u the fact I am so shocked that the young
and good looking girl that I saw 2day could be facing such. While going thru and
reading the story something flashed back to my mind reassuring me that the
living God who pathed the red sea for the Isrealite to work on bear ground is
still able to heal your daughter. I strongly believe that by the grace of God,
Keisha will WALK if God want. I pray that the Almighty God will be with u and
your children and will meet all yr needs in Jesus name, Amen. Remain Blessed. ID
T1:
ruthfrow@yahoo.co.uk
Date:
09 Sep 2003
Time:
13:09:18
Remote
User:
Comments
thanks very informative.
spurred me on to make a few enquiries and phone calls. forgot i could claim
nappies, and costs of clothing etc from family trust fund. we see so many people
and have so many appointments i forget about the little things. Mum of 3 year
old with tetraplegia.. georgeous cuddly little thing.. keeps biting me she
kisses that hard. makes me smile through the day. thanks again for your hard
work.
T1:
Date:
13 Sep 2003
Time:
18:31:37
Remote
User:
Comments
Sorry to hear about Keisha's
difficulties. My son was born 11 weeks ago. He is our first child. The pregency,
my wife says, was straight forward. Samuel was born with the cord four times
around his throat. He was without Oxygen for more than six minutes. He has CP
and Epilepsy and after the MRI scan looks likely to be severely disabled. I
intend to keep your site in my favorites and return often. James, father of
Samuel, 11 weeks.
T1:
Ina
Date:
24 Sep 2003
Time:
13:35:56
Remote
User:
Comments
Hello, what a nice website.
ingeniously! I am pleased to have found this site here. Web Design makes fun and
the eye will be contently pleased here, bye
T1:
Date:
26 Sep 2003
Time:
01:31:43
Remote
User:
Comments
Nicolette Thank you so much for
taking the time to produce such a helpful website. My 9 month daughter was
diagnosed with CP at 2 months of age and my life has been hell since then. But
coming across websites where other mums share their experiences, like you have
done really helps. Thank you. Purabi
T1:
linda.howe@bt.com
Date:
27 Sep 2003
Time:
10:07:46
Remote
User:
Comments
Hi Nicolette I'm sorry I missed
your last day at Connect - I had planned to be in the office to give you a hug
and say goodbye but, as usual, work things got out of hand. You will be missed.
I hope you and the girls are enjoying the new found time together. is your Mum
still with you? The web site keeps on getting better and better - well done.
Keep in touch, lots of love to you all Linda
T1:
geoff@connectnet.org.uk
Date:
29 Sep 2003
Time:
10:46:06
Remote
User:
Comments
Hi Nicolette How's thing going?
Good to see that Keisha's getting up to mischief. Can't think where she gets it
from! Geoff P
T1:
ginjaninja_782@hotmail.com
Date:
29 Sep 2003
Time:
13:14:37
Remote
User:
Comments
hi niccolette i like the site
its very good im on it yay but i also like the idea that other pple can write to
u and share their problems so keep up the good work and congratulations on
getting married soon ! see ya soon Daniel Smith (you know, janes son).
.............................................................................
T1:
trudidotgarneratsevenoaksdotgovdotuk
Date:
01 Oct 2003
Time:
10:59:10
Remote
User:
Comments
Lovely to meet you both on
Sunday at Novotel (I'm Aidan's mum, Trudi, who'd logged on before). Having now
refreshed myself of Keisha's progress from your story, it really is wonderful
what she has achieved in just under a year. I always find it encouraging and
very positive meeting other parents especially those who are proactive in
helping their children. Aidan was considered too young to have a formal
assessment by Euromed which is a bonus in one way as it gives us another year to
raise funds if that is the route we want to take. It really was very nice to
meet you both - your daughter is a beautiful credit to the help that (I'm
assuming) you have worked hard to receive.
T1:
ptyborg@yahoo.com
Date:
01 Oct 2003
Time:
12:44:38
Remote
User:
Comments
I am a polish student. My
teacher is a discover a "SPIDER"-modern way in rehabilitation. Maybe
if somebody see on his website www.norman.med.pl that firm can help in
rehabilitation child with CP.
T1:
Date:
14 Oct 2003
Time:
14:14:25
Remote
User:
Comments
I was pleasantly surprised when
I came upon your website. It is just fantastic! I am an outreach worker working
with parents of children with disabilities. Often they express the whirlwind of
emotions on intial diagnosis and support. I will definitiely put them on to your
website. Keep on doing a great job and best wishes to you and Keisha!
T1:
annettebdcps@aol.com
Date:
21 Oct 2003
Time:
14:28:18
Remote
User:
Comments
I have really enjoyed reading
all the sections. I am involved with people with physical disabilities and the
full time carer of a 11 year old boy with CP and wheelchair dependent. Well
presented information and very informative.
T1:
rowmarx@easystreet.com
Date:
13 Nov 2003
Time:
00:05:36
Remote
User:
Comments
Could you tell me what brand of
Posture Walker Keisha uses? I'm looking for one for my brother, but they're hard
to find...Thank you
T1:
helus1atbtinternet.co.uk
Date:
26 Nov 2003
Time:
14:20:34
Remote
User:
Comments
My daughter Alena was diagnosed
with right hemiplegia cerebal palsy yesterday. i have just read the whole web
site and feel much more confident about the future and feel a little more
knowledgable about CP. Youre right, the story about Holland is fantastic and
sums it all up. Reading Keishas story, it clicked, alena has chrinic
constipation and hates having her hair washed. Thank u, Helen
T1:
03mccormackfiona@qe.dorset.sch.uk
Date:
02 Dec 2003
Time:
13:44:04
Remote
User:
Comments
good luck at work and i love
you lots from fiona
T1:
Date:
02 Dec 2003
Time:
20:40:36
Remote
User:
Comments
Hello Nicolette, thank you so
much for the info on this web site.
T1:
Date:
02 Dec 2003
Time:
20:42:10
Remote
User:
Comments
hello Nicolette, thanks for the
info on this website it really helps. Tiffany 19
T1:
Date:
02 Dec 2003
Time:
20:43:49
Remote
User:
Comments
hello Nicolette, thanks for the
info on this website it really helps. Tiffany 19
T1:
queripel6@tiscali.co.uk
Date:
25 Jan 2004
Time:
15:22:26
Remote
User:
Comments
Iam so glad that I have found
your site. Iam a single parent with 2 children Ross aged7 who has severe brittle
asthma and is freq in and out of hosp. Lauren aged 4 has ataxic diplegic cp. She
wears bilateral hinged splints, and like Keisha she has reg botox and serial
casting, as she is growing so fast at present the stretchesare soon wearing off,
she also at present suffers from severe night cramps which I find really hard to
cope with, its heartbreaking to see her in so much pain and discomfort, I was
wondering if you or anyone you might know has had experience of same ??
Sometimes you feel you are really on your own trying to find out any info I have
been looking for info on trikes ,riding etc. Well done to you for creating this
site, My name is Kathy hope to keep in touch many thanks.
T1:
connor705@hotmail.com
Date:
27 Jan 2004
Time:
10:54:16
Remote
User:
Comments
Dear Kayla, I was touched to
her your story . my Best friend Emma has Cp to . like you she has a great
personality . Emma will be 18 in Feburay we are all looking forward to this mile
stone in her life . you have proved that people with a disabilty don't have to
be left out . in ireland there is not a lot of employment for people with
disability . your truly Jean Connor ireland
T1:
karendotcliftonatntlworlddotcom
Date:
11 Feb 2004
Time:
20:36:57
Remote
User:
Comments
I have just discovered your
site, thanks to a slot in the scope magazine, and I think you are doing a
valuable service to all the other parents of 'special children'. My son has CP
because of a drowning accident at 15 months, and the feeling of helplessness and
isolation is helped by being able to talk to other parents in the same
situation. The parking problems you discuss on the site can have the opposite
effect as well, if like myself you have a child that looks fine physically but
is unable to walk steadily. I myself have been sworn at because of parking in a
disabled bay (quite legitimally) by older people who do not seem to be able to
grasp the idea that you do not have to be old to be disabled. it only takes a
little courtesy on peoples parts to make life easier for everyone! Now that I
have discovered you I will be making regular visits so keep up the good work and
good luck. Karen
T1:
nicola@oddyn.freeserve.co.uk
Date:
12 Feb 2004
Time:
10:44:58
Remote
User:
Comments
Well done with your good work.
I have an 11 year old son with CP. Diagnosed at 8mths. Have been through several
therapies, Peto Inst, botox, hip reconstruction hyperbaric oxygen (?). Very
happy boy and uses elecctric chair. Would like to hear from anybody with child
of similar age. I would like to setup a support group in my area. Nicola
T1:
ruth at ward1 dot freeserve dot co dot uk
Date:
25 Feb 2004
Time:
16:20:50
Remote
User:
Comments
Hiya, Your website is great. My
daughter has cp she is 14 months old and has no head, trunk control etc... and
is fed via a tube. Reading all you info has made me think more possative and
just take each day as it comes. Thanks, Ruth.
T1:
jef70dj@aol.com
Date:
17 Mar 2004
Time:
23:18:23
Remote
User:
Comments
just found your site and it is
a great i have a child with c.p,epilepsy,blind, shunted hydrocephalus and
showing autistic features i will be passing your site on to all my friends &
their famlies who have s.p kids, just love the stories about the parking.a few
years ago i spoke (think bark would be a better discription) to a couple who had
parked in the parent and child parking as there was no child with them the reply
i got was that "she was pregnant so they did have a child"!!! what can
we say to that, not everyone can cope with a s.p chld maybe we have bigger
voices to fight for them plus it helps to be mad but it may take them longer to
learn to do some things but we do not take it for granted it is an added bonus
when they do it.
T1:
alison_wilkinson at msn.com
Date:
26 Mar 2004
Time:
10:51:31
Remote
User:
Comments
hi i enjoyed reading your
website our youngest daughter has mild cerebal palsy but she only got diaginosed
about two years ago she is now six there isnt a lot of information on the
subject unless you have a computer we also have been recomened her to have the
botox injections but we feel that it wouldnt be right for her im glad now i know
where too look for information.
T1:
twistedhazelnutathotmaildotcom
Date:
21 Apr 2004
Time:
21:23:32
Remote
User:
Comments
a very helpful site,nice to
know i'm not alone!!
T1:
yaie@yafaau.org
Date:
01 May 2004
Time:
12:32:40
Remote
User:
Comments
Hi Nicollette. The information
was very useful and informative. I am a father of a CP child located in the tiny
islands of Maldives. I came by yr site to see the types of physiotherapy you
give. We have limited resources here but I'm trying to get more from the web. My
son Yafaau is now 1yr using special seating and he has a webpage too. Please
feel free to browse by http://www.yafaau.org
our love and well wishes will always be with you. Keep it up
T1:
kathy_howarth@yahoomail.com
Date:
13 May 2004
Time:
07:50:55
Remote
User:
Comments
hi nicolette. im the mom of a
4year old he is spastic quad cp,his name is ned. we adopted him when he was a
newborn at 7 months old we found out about his cp.ned doesnt walk or talk he is
just learning how to stand.we live in NOATAK,alaska a village of about 400
people.WE HAVE TO TRAVEL TO ANCHORAGE FOR P.t and o.t and speech therapy.ned
uses othos.being way up here its good to have such good information from your
site.sometimes Ithink if we lived in the city that ned would receive
moretreatments .ned will be in his third year of school this fall,he will
graduate from pre-k and hopefully he will walk with his walker on that day.ned
also receives botox every four months and also takes bacolfen (Liquid)'Ned is
like the whole villges child, he is so full of LOVEand gentle and kind he is
very smart he teacher says that he learns faster than other kids his age in
class.well thank-you for your wonderful site its sites like yours that makes my
day a little easier.Thank-you and god bless the children
T1:
kathy_howarth@yahoomail.com
Date:
13 May 2004
Time:
08:13:51
Remote
User:
Comments
hi nicolette. im the mom of a
4year old he is spastic quad cp,his name is ned. we adopted him when he was a
newborn at 7 months old we found out about his cp.ned doesnt walk or talk he is
just learning how to stand.we live in NOATAK,alaska a village of about 400
people.WE have to travel to anchorage for hiso.t. and p.t and speech therapy,NED
also uses orthos since he has been six months old.Ned is so ful of love he is
just the perfect child he has taught our family how to be strong,because of him
my daughter has decided to become a p.tWe are just so blessed with a special
little person. Thank-You for your wonderful site and God Bless !
T1:
robertattate4751dotfreeservedotcodotuk
Date:
16 May 2004
Time:
09:09:57
Remote
User:
Comments
My grandson, who is 23 months
old, has just (Friday 14.5.04) been diagnosed with diplegia. He is a bright and
beautiful child and the whole family are devastated. My daughter-in-law is 7
months pregnant too and we are all extremely worried about both her and the
baby. Your website has helped me a great deal thank you. Ann
T1:
Date:
17 May 2004
Time:
14:03:58
Remote
User:
Comments
Hi all - Nicolette here. Hope
you get to read this as I am not online anymore and cannot update this site. I
do stop by from time to time to read messages left and will keep doing so. Thank
you to everyone who has left a message - I'm glad you find the site useful. Take
care and keep faith. (p.s. I don't have e-mail anymore either so am unable to
respond to any sent. - Sorry)
T1:
pinkcobwebs@tiscali.co.uk
Date:
30 May 2004
Time:
16:53:50
Remote
User:
Comments
Today we took my disabled
mother in law to a DIY store. We did NOT park in the disabled spaces and wouldnt.
However when she came out of the shop we drove up to save her long walk and
because we were in the way we reversed into a disabled bay to let her unload her
things and get in. We received a mouthful of abuse from the man in the next car-
we hadnt even turned off our engine! Please remember that not all disabled
people have their own cars! It has ruined my day and my mother in laws! Gerry -
Cornwall
T1:
bonssi@ntlworld.com
Date:
30 May 2004
Time:
23:32:04
Remote
User:
Comments
I have a 4 month old son who
was born 10 weeks prem. When he was 3 weeks old he had a very serious head bleed
and it was touch and go for some time. Finaly he came home when he was 9 weeks
old. I have been told by the consultant that due to his bleed, he now has
abnormal movements and becomes very stiff and screams through out the day. She
has told me that they are keeping there eye out of cerebral palsy as he is
showing some signs. She has said that they will not know anything until he grows
up a bit more. I have found your website very usefully as also i have not been
told anything about this. I know it is to early yet but i would have liked to
have received more information and what it is. Thank you for giving me what i
need to know and i will be visiting this website again as more things crop up
yours trully Tracey x x x
T1:
cubbertoathotmaildotcodotcom
Date:
05 Jun 2004
Time:
21:14:46
Remote
User:
Comments
Hi I found your site very
interesting I have a son who is 5 his origional diagnosis was mild cerebral
palsey but when we moved up to Scotland his new neurologist said he only had a
learning difficulty but has now offered him Botox we are really scared and
wondering if this is the best thing for him as he starts mainstream school in
August please help!
T1:
lindsy.goodwin@ntlworld.co.uk
Date:
07 Jun 2004
Time:
21:31:30
Remote
User:
Comments
hi my name is linzi i am mum to
zach aged one years i have been told he has server cerebral palsy he also as
water on the brain and epilepsy,i feel the doctors have been very unsoportive
and i am now looking for other parents to talk to as i feel very isolated with
the condition
T1:
talitha023@aol.com
Date:
05 Jul 2004
Time:
22:59:41
Remote
User:
Comments
Hi Nicolette! My name is
Nicole. I am 28 & have spastic quadrapalegic cp. My feet are affected the
most. I have 2 learning disabilities- dyscalcula (math is nearly impossible) and
a processing problem w/ my short term memory. I also have what they call
"space out spell", or complex partial, seizures. If I can be any help
to you, parents or kids w/ cp, please don't hesitate to e-mail me.
T1:
marie.watkins 2at btinternet dot com
Date:
06 Aug 2004
Time:
19:44:40
Remote
User:
Comments
hi my name is marie i have a 20
month old girl named frances and we were told she had cp when she was 14 months
i have found your web site very good hope to hear you marie
T1:
derin@wanadoo.co.uk
Date:
22 Sep 2004
Time:
13:43:02
Remote
User:
Comments
just read keishas story it was
like reading my own daughters biography she to was diagnoised at 20 months and
also started main stream school this year her name is keryl and shes the most
special thing in the world she gives us so much inspiration she to uses a walker
and is due to have injections to have her hamstrings stretched just wanted to
post this note to say well done for having this page and letting people know
there is always help and support hope everything goes well with kiesha kerry
smith
T1:
amanda .com
Date:
24 Oct 2004
Time:
19:39:40
Remote
User:
Comments
I love you love, Hanah
T1:
lyndseygoodwin@msn.com
Date:
03 Nov 2004
Time:
19:32:40
Remote
User:
Comments
hi just to say great site i am mum to zach 18 months,who as cp which affects his hips,pelvis,legs,he is a bright little boy who wants so much to get walking his little mind his saying yes his legs saying no,so hes very frustrated,mummy very sad seeing him like that anyways i will stop babbling