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| Sotos Syndrome | |
 The Child Growth Foundation : All Forums : Sotos Syndrome |
 Topic: social worker |
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Decsmum
Senior Member 
Joined: 04 Feb 2008 Online Status: Offline Posts: 102 |
   Posted: 29 Nov 2008 at 5:22pm |
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Hi Clare.The meeting went well.The outreach worker for Declan came and she has now gone away to find out what is going on in the area for Declan to go too with her.She seemed very nice and is going into his school next week to get a better picture of what he is like out of the home environment.So, all in all, a very positive meeting. Will keep you posted on any updates. Carole-Anne xxx |
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wood
Member 
Joined: 06 Oct 2007 Location: United Kingdom Online Status: Offline Posts: 27 |
Posted: 29 Nov 2008 at 8:15pm |
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Hi Carole-Anne, I'm so glad that the meeting went well and they seem to be taking you seriously. I hope the visit to school goes well next week.
Please keep me informed on how things go.
Take care
Clare xxxxxxxxxx
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Decsmum
Senior Member
Joined: 04 Feb 2008 Online Status: Offline Posts: 102 |
Posted: 12 Dec 2008 at 12:16pm |
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Hi everyone.Declan had his first visit from the outreach worker last Monday and it went really well.They only spent the time in the house together colouring etc (on my request)but they were able to get to know one another and got along famously
 .We have arranged for the same next week and then take it from there,but talks of going to the Circus and a show together have been mentioned for the future.Hopefully this issue is now resolved.
Thanks to everyone who have given me help and advise along the way and good luck to anyone who is just starting this process.
Carole-Anne xxx
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Decsmum
Senior Member
Joined: 04 Feb 2008 Online Status: Offline Posts: 102 |
Posted: 06 Sep 2009 at 10:00pm |
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Just a quick update on the above. Well,to put it simply we are back to square one. The outreach worker has left.There was no-one available to replace her .We have been placed with a voluntary organisation and as they have no suitable volunteer have not heard from them for 6 weeks and after previous encounters will probably not hear from them again. So, i am left with yet another club to take Declan too as he loved going there with the outreach worker so muchNot that i mind, but it means that i have a club on every night, 7 days a week and i am 30 weeks pregnant with no 5(my decision i know)
Decided to let things lie though as Declan is having rod surgery for his scoliosis at the end of the month and i can't be bothered starting the fight all over again and also, i don't know how long it will take Declan to fully recover.
Carole-Anne
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Declan. My beautiful son. Born July 1997.Diagnosed with Soto Syndrome at 6 months.Mutation on NSD1 gene found years later.Recovering well from spinal rod surgery.Attending a special school.
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Decsmum
Senior Member
Joined: 04 Feb 2008 Online Status: Offline Posts: 102 |
Posted: 24 Aug 2010 at 1:30am |
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Declan is recovering well from his rod surgery and we now have a beautiful 9 month old baby boy who is a wonderful addition to our family,
Decided to kick things off again to see if we can get support for Declan.A meeting has been set for September, so we will see what happens.Here's hoping!!!
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Declan. My beautiful son. Born July 1997.Diagnosed with Soto Syndrome at 6 months.Mutation on NSD1 gene found years later.Recovering well from spinal rod surgery.Attending a special school.
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