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Topic: Thank you for visiting
Admin
Wed 15 Jul 09 16:22

Hello and welcome to the CPTalk forum. We want to be a useful place for anyone. Remember to register and login to post a reply or start your own topic for discussion.
Thank you for visiting.
joeyjoejoe
Fri 21 Aug 09 10:36

Congratulations on the site Anna – It looks great and hopefully will take off in a big way. I genuinely think this is a fantastic forum for people to get together and share thoughts, feelings and experiences with each other surrounding this (often difficult) topic. In addition to the forum – I think that the links to Articles etc. is a great way for people to further educate themselves around cp – iF i can help in any way (links to journals etc) let me know – and well done again x joe x
Del
Tue 15 Sep 09 10:03

Wishing you all the best of luck with the site Anna. Harry is such a lucky little boy in that he has had parents willing to research, fight, discover, understand and push to bring advantage to every disadvantage his CP has left him with. I know how hard it has been and yet it has reaped rewards: Harry is a happy, cheeky and charming young man who resonates confidence.

I know from standing on the sidelines for seven years that this is not an easy subject to understand, discuss or open up to.

So, I hope CP talk (more a mission statement than a website title) can encourage others to open their hearts, understand, support and feel supported. Can bring some element of comfort to those who feel alone – and can bring benefits and advantage to those children and their families who live every day, every hour, every minute with cerebal palsy.
Anna
Wed 16 Sep 09 19:50

hello all you new people who have registered with us. A big welcome to all. It would be great if you could write a little here on the forum. It could be simply just to let us know a little about yourself, or what sort of day you have had (good or bad). Hope to hear from you soon. ANNA
dwelshbird
Wed 16 Sep 09 20:02

Hi my name is Donna and i am a mum to 5 children 10,8,5,3,and 22 months.
Emilie and Evie have both been diagnosed with CP both within 24 hrs! We only found out in July so its all still pretty new to me and my partner.

Emilie has a mild form of diplegia she is unable to pedal a bike she is very weary on steps stairs etc. She also has difficulty dressing herself.Emilie was 7 weeks prem and was breathing by herself when she was born.

Evie-Lou on the other hand well where do i start? The hospital just kept putting her developmental delay down to her being 10 weeks prem.Well in July i was having none of it surely she would of been sitting up by now!
So they examined Evie and then told me that she had cp and was basically marched out of the hospital with NO information on CP at all i was just told that not to look into it to much on the internet as there were many types and no 2 children with CP are the same. I had heard of CP but didnt know to much about it. So we are awaiting our appointment with a different doctor who can then diagnose Evie further.
She is a bright baby always smiling its just her moblility side that lets her down. She is unable to sit,crawl and walk and sometimes has her fists clenched tight.

I’m desperate to hear off other parents in a similar position.
Well done Anna for this site here’s hoping it will pick up!

Donna

I am a mum to 5 children, the youngest two have just been diagnosed with Cerebral Palsy. Emilie is 3 years old was 7 weeks prem and just diagnosed with a mild form of diplegia. Evie-Lou who will be 2 in nov was 10 weeks early and she is still unable to sit unaided,crawl, walk.
Anna
Thu 17 Sep 09 05:15

Donna,
Hi,
Oh yes, been there, with doctors who tell you very little. We have come to realise that there is probably little they can tell you. Yes no 2 children are the same, and it is unfortunately a waiting game. We were told to imagine a ruler 1 – 100, 1 is very mild with 100 way at the other end of the scale, your child will be some where in on that ruler. Great but where? We found that while trying not to give false hope to parents, doctors probably end up giving no hope, if that makes sense. We had very ‘black days’ where our imagination took over, so we decided that we would do everything we could to make sure that ‘H’ made it as far down that ruler as he could.

We insisted on speaking to a physio when he was days old, we knew there were going to be problems, what could we do now to help him. They probably thought we were mad, but gave us a little list of excercise we did at each nappy change, and for his clenched fists, we would hold his hand on our palm and lightly press with our thumb from his knuckles down towards his wrist. He still sometimes put his hand into a relaxed fist, but normally when he is trying to hit his sister! I have no way of knowing what will help your girls, only that if you can get your consultant at the hospital to refer you through to physio, occupational therapy, and we even got into Speech and language quite early (round about when he was due to start eating), it can only do good. They should be able to point you in the right direction.

Anna
sabrina86
Fri 18 Sep 09 15:10

Hi,

My name is Sabrina Howarth. I am from Ontario Canada and I was born with CP.
If anyone has any questions please don’t hesitate to ask.
Take care,
Sabrina

I was born with Cerebral palsy.
My hobbies include singing, listening to music and playing on the internet.
Anna
Sat 19 Sep 09 09:47

Sabrina,

Hello and welcome. Wow Canada, I did not expect that. We have just set up this site, so thank you for contacting us and writing on the forum. I am sure that once things get going people will have lost of questions. For me I would love to know a little about your CP, how does it affect you. My little boy has low muscle tone, so he falls over alot and find it difficult to do some things, his cor ordination is gettings better, but it is hard for him to write and balance etc.

How old are you? Did you enjoy school? What do you do now?

Take care and I look forward to hearing from you.

Anna

p.s. How did you find out about the site?
sabrina86
Mon 21 Sep 09 20:49

Hi Anna,

I have Mild/moderate spastic quadraplegia CP. All four of my limbs are affected. (legs more then arms) I cannot walk without assistance but, in spite of that I am very indipendant. My coordination isn’t the best at times. It seems to depend on the day for me but I take things one day at a time. Your website was posted on a facebook group about CP which I am involved in. As far as what I do know, I am a volunteer at a long term care facility. I did enjoy school very much. I graduated in 2005 with a full Ontario Secondary school diploma. I am really enjoying volunteering where I do. I work with some really great people.
I am almost 23 years old. I will be 23 this Thursday.
Take care,
Sabrina

I was born with Cerebral palsy.
My hobbies include singing, listening to music and playing on the internet.
zaksmum
Thu 24 Sep 09 22:04

Hi everyone. Found this group thanks to link on one of the groups on facebook. A great idea, and I can’t wait to get to know you all.
My son Zak is two and a half. He’s such a sweetheart, with blue eyes that will melt the coldest of hearts.
He got stuck during delivery and and for 9 minutes they struggled to bring him back to us. Once he was ventillated he started fitting, and has never really stopped since.
It took him 4 weeks to cry, and he’s still pretty rubbish at it. We stayed in hospital for just over 4 weeks, and on the day we went home they broke the news. He had HIE II, and how this would affect him was anyones guess.
It became clear quite quickly that things weren’t right. By 2/3 months he still had never smiled, tracked or followed with his eyes, he made cycling movements with his arms and legs and his hands were permanently fisted.
Over the following months he was diagnosed with severe spastic quad CP, Epilepsy, West syndrome, GORD, severe developmental delay, registered blind, gastrostomy fed, micrcephally, sandifers syndrome, PMLD, Lennox gastaut syndrome and incurable cuteness.
He has recently started attending a special needs school nursery, which he seems to like, though it is impossible to tell…he has never learned to smile, can’t communicate (except for telepathically) and is really unaware of his surroundings….but he doesn’t cry and is tired when he gets home, so I assume he likes it.
I will fill you all in a bit more as time goes on….don’t want to bore you too soon.
Thanks for this group. It is so important for me to talk about things. It’s the only way I can keep my head above water. xxx Mags xxx

I am Mags. Mum to Ashleigh (10) and Zak (2and a half). After getting stuck during delivery Zak has severe CP, which has left him registered blind, gastrostomy fed, no speech, can’t walk or hold his head up and suffers fromLGS which is severe, uncontrollable epilepsy. My kids are my everything.
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