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the monkey puzzler

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Joined: 2014-10-14 Posts: 32
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Hi everyone. Just a thought, would be good to know where everyone in is in the world and a little about their little ones.

My family and I are in Northern Ireland. We’ve two boys one who is almost 6 and profoundly disabled - no speech or mobility and as yet no known cause. We also have his little brother who is a brilliant friend to his big brother.

Look forward to getting to know some more families around the world through the Firefly Garden.

01 November 2014 10:15 PM # 1

Supermum

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Joined: 2014-10-12 Posts: 65
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Hi we are also from Northern Ireland, we have 5 boys the youngest has an undiagnosed genetic neuromuscular disorder. He has no speech but relatively good understanding and a whizz kid in his wheelchair, he’s never ate anything and is fed continuly via a tube into his Jejejum(small bowel) he does have a partial diagnosis of arthrogryposis but doesn’t tie in with all his other problems. Be lovely to hear from others in similar situation.

02 November 2014 02:32 AM # 2

SarahHalstead

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Joined: 2014-11-02 Posts: 17
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Hello! I am Sarah. We are from North Carolina. We have a four year old son, Carsyn, that has Holoprosencephaly and Cerebral Palsy. He does not walk, talk, or crawl. We also have a six year old son, Dustyn.

Here is a photo of them from Halloween last night.

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02 November 2014 08:32 AM # 3

the monkey puzzler

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Joined: 2014-10-14 Posts: 32
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Lovely to hear from you both. Super photo Sarah!!

02 November 2014 07:10 PM # 4

munam

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Joined: 2014-10-17 Posts: 33
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Hello Monkey Puzzler.  Welcome to the community where you’ll be able to shed your fears, happy moments and sadness with families who are all in the same situation of having a family member who has special needs.  In my case my little grand daughter who has cerebral palsy,  wishing all of you good luck with your little ones and hoping every single one of them will improve with therapy and lots and lots of love and affection from their loved ones.  We’re all in the same situation so let’s all support each other.  Good luck…..Munam

02 November 2014 07:12 PM # 5

munam

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Joined: 2014-10-17 Posts: 33
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Sarah what a lovely photograph of your little boy in his Halloween costume.  Looks like he had fun.  Wishing you all the very best….Munam

03 November 2014 09:19 PM # 6

the monkey puzzler

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Joined: 2014-10-14 Posts: 32
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Thanks munam. Lovely words.

04 November 2014 12:24 AM # 7

Healing Heart

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Joined: 2014-10-10 Posts: 701
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US/Colorado….our little guy is almost 6, spastic quad CP with athetoid movements as a result of a birth injury, does not walk, talk, crawl, self-feed or independently sit, but is cognitively very aware and is the light of our lives :)

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05 November 2014 06:19 PM # 8

SarahHalstead

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the monkey puzzler - 02 November 2014 08:32 AM

Lovely to hear from you both. Super photo Sarah!!

Thanks so much!

05 November 2014 06:20 PM # 9

SarahHalstead

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munam - 02 November 2014 07:12 PM

Sarah what a lovely photograph of your little boy in his Halloween costume.  Looks like he had fun.  Wishing you all the very best….Munam

Thanks so much!

05 November 2014 06:20 PM # 10

SarahHalstead

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Healing Heart - 04 November 2014 12:24 AM

US/Colorado….our little guy is almost 6, spastic quad CP with athetoid movements as a result of a birth injury, does not walk, talk, crawl, self-feed or independently sit, but is cognitively very aware and is the light of our lives :)

He sounds amazing! A lot like my little guy.

13 November 2014 09:08 PM # 11

the monkey puzzler

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Joined: 2014-10-14 Posts: 32
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Just bumping this post again incase there’s anyone that’s just joined! Please do a wee intro.

17 November 2014 06:05 PM # 12

AlwaysRunning

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Joined: 2014-10-10 Posts: 270
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Hey I missed this thanks for bumping!
I’m mum to 2 boys the eldest with profound learning delay but medically very well!!
We live in Northern Ireland UK

19 November 2014 08:48 PM # 13

the monkey puzzler

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Joined: 2014-10-14 Posts: 32
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Hi Always Smiling. Nice to see another NI family! Look forward to catching up on here!

01 December 2014 06:22 PM # 14

LittleFox

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Joined: 2014-10-10 Posts: 13
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I’m Leanne from N.Ireland my best friend has a profoundly disabled son (who I love to the moon and back) who is the same age as my little boy.

02 December 2014 01:11 PM # 15

the monkey puzzler

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LittleFox - 01 December 2014 06:22 PM

I’m Leanne from N.Ireland my best friend has a profoundly disabled son (who I love to the moon and back) who is the same age as my little boy.

*Waves* at Little Fox! Thanks for the intro - good to see you on here.

Probably a bit cliched, but you really discover your true friends when you need them most - lovely that you are on here and so involved with your friend’s son!

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