# Yipeeeeee :)



## Emmea12uk

I just wanted to say how great it is to see this on bnb!!

For those of you who dont know, and i am sure the whole world knows by now lol, my son tom, 4 months has spinda bifida and hydrocephalus


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## babezone

i think its cool too x x x


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## Laura1984

this is such a good idea :) xxx


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## claralouise

its a great idea sometimes us mums with sn children need to vent and scream and this is a great way of keeping the stress down


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## Vickie

I think this forum is a great addition!


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## AppleBlossom

I think this is a great idea :)


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## reallytinyamy

this is great to see. I've been a carer to over 90 children with different special needs and know how important places like this are.


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## leeanne

Fabulous idea!


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## LaDY

Its great x


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## Emma.Gi

It's just brilliant.


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## Wobbles

Emmea12uk said:


> I just wanted to say how great it is to see this on bnb!!
> 
> For those of you who dont know, and i am sure the whole world knows by now lol, my son tom, 4 months has spinda bifida and hydrocephalus

Was yoru idea chicky :hugs:

Hope it becomes a source of support for you and others x

Did your FB pals find it useful?


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## mordino

I too am glad to see this forum! 

What about another new forum for mothers/expectant mothers who have special needs/disabilities?


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## honey08

:wohoo::wohoo:

really plsed this forum is here for all that need it,uv each other to talk2,plus educating others :)


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## Always&amp;4ever

Wonderful to see this on the forum


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## Mamafy

yeah :yipee: great addition guys :)


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## Drazic<3

What an excellent idea :)


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## Emmea12uk

Wobbles said:


> Emmea12uk said:
> 
> 
> I just wanted to say how great it is to see this on bnb!!
> 
> For those of you who dont know, and i am sure the whole world knows by now lol, my son tom, 4 months has spinda bifida and hydrocephalus
> 
> Was yoru idea chicky :hugs:
> 
> Hope it becomes a source of support for you and others x
> 
> Did your FB pals find it useful?Click to expand...

havenbt told them yet! I have been hiding away from bnb and fb for a few days!


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## Nikkinoonoo

Fab idea. Not sure really if Jessie is classes as special needs as she was born disabled but doesn't require (as yet) any different care to a 'normal' baby her age. Of course excluding the hospital and physio visits. Sincerely hope this section brings strength and support to all those who use it xXx


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## Emmea12uk

Nikkinoonoo said:


> Fab idea. Not sure really if Jessie is classes as special needs as she was born disabled but doesn't require (as yet) any different care to a 'normal' baby her age. Of course excluding the hospital and physio visits. Sincerely hope this section brings strength and support to all those who use it xXx

This group is also for emotional support. having a disabled child, even if they dotn require anything special can still be stressfull!:) How is she?


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## Christine33

Special Needs Parenting is such a great idea! Well done BnB!

Christine
XXX


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## who's_mummy

Yay! Fab idea!

My eldest son has Charcot Marie Tooth Disease (CMT) which is a neuromuscular condition that he inherited from my husband. Our middle son is unaffected as far as we can tell and we should be able to tell in the next few months if our youngest has it - it's 50:50 so not fantastic odds.

Gemma x


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## Deb&Matilda

Hi Emma,
Im here am I the first person to come across from FB.

Hello to everyone else.
My daughter is called Matilda is 6 months old and suffers frm Spina Bifida, Hydrocephalus, Epilepsy, Dislocated Hips and Knees and Talipes oh and Arnold Malformation. Just a little list xxx

Cant wait to chat to everyone xxx


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## FEDup1981

What a fantastic idea!! Well done to Emma for suggesting it, and Wobbles and SC for creating it. :happydance:

Whats FB btw?


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## Deb&Matilda

fb = facebook xx


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## Emmea12uk

who's_mummy said:


> Yay! Fab idea!
> 
> My eldest son has Charcot Marie Tooth Disease (CMT) which is a neuromuscular condition that he inherited from my husband. Our middle son is unaffected as far as we can tell and we should be able to tell in the next few months if our youngest has it - it's 50:50 so not fantastic odds.
> 
> Gemma x

What is it do you mind me asking?


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## Emmea12uk

Deb&Matilda said:


> Hi Emma,
> Im here am I the first person to come across from FB.
> 
> Hello to everyone else.
> My daughter is called Matilda is 6 months old and suffers frm Spina Bifida, Hydrocephalus, Epilepsy, Dislocated Hips and Knees and Talipes oh and Arnold Malformation. Just a little list xxx
> 
> Cant wait to chat to everyone xxx

yay hi debs!


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## who's_mummy

Emmea12uk said:


> who's_mummy said:
> 
> 
> Yay! Fab idea!
> 
> My eldest son has Charcot Marie Tooth Disease (CMT) which is a neuromuscular condition that he inherited from my husband. Our middle son is unaffected as far as we can tell and we should be able to tell in the next few months if our youngest has it - it's 50:50 so not fantastic odds.
> 
> Gemma x
> 
> What is it do you mind me asking?Click to expand...

No, not at all. Am I allowed to post a link to the organisation website do you think? It's a bit longwinded lol!


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## who's_mummy

Decided to just 'borrow' this from them instead:

CMT is a condition that affects the nerves in your legs and arms, known as the peripheral nerves. 

Our body&#8217;s system of nerves is similar to a network of electrical wires. Some of them, called sensory nerves, are designed to pass information back to the brain about what you can feel with your fingers, toes, legs and arms, etc. The others are command pathways, telling your muscles to do something, like lift your left foot &#8211; and are called motor nerves. 

Because CMT affects both types of peripheral nerve, you may experience motor problems as the command pathways fail to respond properly, causing weakness and wasting in your muscles and numbness/sensory problems, arising from the problems with the sensory nerves. 

The ways it affects William is:
He falls a lot
He can't run very well and he can't walk very far
He can't jump very well and he can't hop
He has very high arches in his feet, it is a nightmare getting shoes to fit him
He has splints to wear at night because due to the muscles at the front of his lower leg being weak, the ones in the back of the leg can work harder to compensate which ends up pulling his foot downwards, over time this can cause the tendon in the back of the leg to shorten permanently, the only solution to which is surgery. The splints, along with stretching exercises help to keep the muscles, tendons etc, flexible.

Oh, and to top it off and completely unrelated he's jut had to have glasses for short-sightedness grrrr!

Feel free to ask any more questions


In brief, this is CMT: 

is not life threatening 
affects people very differently, even within the same family 
slowly gets worse of time (is progressive), causing gradual deterioration of the both the motor nerves and the sensory nerves 
this deterioration causes the atrophy of the muscles in the foot, lower leg, hand and forearm 
can cause foot drop walking gate, foot bone abnormalities (including high arches and hammer toes), problems with hand function and dexterity, balance problems, occasionally cramping in the legs and arms and loss of some normal reflexes 
may cause long term pain and chronic tiredness 
is usually passed on from parent to child, with a 50% chance of the child inheriting the condition 
is thought to affect approximately 23,000 people in the UK 
Affects all ethnic groups equally throughout the world 
Is the focus of major research, bringing us closer to answering the CMT enigma

Gemma x


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## Donna79x

Super Idea xx


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## Nikkinoonoo

Emmea12uk said:


> Nikkinoonoo said:
> 
> 
> Fab idea. Not sure really if Jessie is classes as special needs as she was born disabled but doesn't require (as yet) any different care to a 'normal' baby her age. Of course excluding the hospital and physio visits. Sincerely hope this section brings strength and support to all those who use it xXx
> 
> This group is also for emotional support. having a disabled child, even if they dotn require anything special can still be stressfull!:) How is she?Click to expand...

She is doing great thanks! She has been havin physio which is more of a developmental check monthly so far and they say they're gonna do the amputation of her little 'foot bit' when she is about 10-12 months. Not looking forward to that very much :( 
But... once thats done and healed they can fit her with her first prosthetic and she can start to stand and learn to walk! This bit I am looking forward to! And of course shopping for shoes seeing as she has never been able to wear a pair before :D 
I hope you and baby Tom are doing well and will look forward to meeting you both at the end of the month xXx


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## Emmea12uk

Nikkinoonoo said:


> Emmea12uk said:
> 
> 
> 
> 
> 
> Nikkinoonoo said:
> 
> 
> Fab idea. Not sure really if Jessie is classes as special needs as she was born disabled but doesn't require (as yet) any different care to a 'normal' baby her age. Of course excluding the hospital and physio visits. Sincerely hope this section brings strength and support to all those who use it xXx
> 
> This group is also for emotional support. having a disabled child, even if they dotn require anything special can still be stressfull!:) How is she?Click to expand...
> 
> She is doing great thanks! She has been havin physio which is more of a developmental check monthly so far and they say they're gonna do the amputation of her little 'foot bit' when she is about 10-12 months. Not looking forward to that very much :(
> But... once thats done and healed they can fit her with her first prosthetic and she can start to stand and learn to walk! This bit I am looking forward to! And of course shopping for shoes seeing as she has never been able to wear a pair before :D
> I hope you and baby Tom are doing well and will look forward to meeting you both at the end of the month xXxClick to expand...

Oh amputation! Poor little thing. But it is for the better and it really doesnt seem to affect babies - surgery that it. They wake up starving! unlike me, i wake up and feel like crap and off my food for days! I have seen a few babies have surgery and they are back to their normal selves in hours!

How old will she be when she gets her pros? They must need changing often due to growing so fast!!

Look forward to meeting you too!! So excited! Not excited about travelling to london tho!


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## Emmea12uk

who's_mummy said:


> Decided to just 'borrow' this from them instead:
> 
> CMT is a condition that affects the nerves in your legs and arms, known as the peripheral nerves...

Wow! I never heard of that before! Must be hard. Motor function is something we have to look out for with SB. :hugs:


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## dizzy65

it is a good idea


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## Nikkinoonoo

They havent said what age they will fit the falsie but they said they would arrange a visit for us to the limb fitting centre at Stanmore Orthapaedic hospital before hand. They said she would only be in hospital a couple of days and would only take a week or so recovery which is much sooner than I ecpected! Sometimes it's hard to understand what is a massive deal to us is something these nurses/docs see several times a day.
I Would think that they will change her falsie fairly often to keep up with her growth and hopefully when she stops growing we can buy her some 'better than NHS ones'.
Thanks for asking, it means a lot to know you're in peoples thoughts eh :) xXx


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## Emmea12uk

babies dont have any fear or know any better - so they just get on with it! I dont think they learn to moan and complain until older! I hope everything goes ok!

She is exactly a month older than tom! She must be thinking about those toothy pegs and be starting to keep you on your toes by rolling all over the place! Tom just started ramming things in his mouth lol. he can stare at toys in his hands for ages! It is well cute

Can/will she be able to learn to sit the same?


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