Monday 26 November 2012
Development of the central nervous system
The port wine stain - cluster of blood vessels - develops in the first few weeks of development in utero - so by the time I was 8 weeks pregnant with Hallie, her condition was already present and the blood vessels were on her tiny brain and what would be her skin eventually!
(Picture taken from google source)
(Picture taken from google source)
Fund raising
Hello, just a quick update while I'm up with my coughing children!
My husband graham is raising money for Sturge Weber UK by doing a triathlon "iron man" event in June 2013. He has a just giving page on www.justgiving.com (type in Hallie Davidson and you'll find him) - donations welcomed please :oD
I'm also trying to do as much as I can too to raise money and awareness for the charity - I have a stall at my son's school Christmas fair on 6.12.12 - I'm going to be selling Christmas cards, raffling a very special cake donated by a very kind friend Hazel and I'm going to raffle a big cuddly bear : ) marlcliffe school have also kindly agreed to ask a few pupils to design special Christmas cards which will get printed up hopefully next week so I'll be selling those on my stall too along with the Sturge Weber UK wristbands and sweeties and children's wooden jewellery too : )
I'm also organising an Usborne book party for 1.12.12 for all the parents in my son's class YR DR and 10% of book sales will go to Sturge Weber UK - any parents who are interested please contact me ASAP as at the moment I don't have enough to hold a party unfortunately : ( - I'm planning on providing wine and food as a thank you for coming x
I've spoken to Jenny Denham this weekend just gone about my fund raising ideas - she is the first person I have chatted to from the Sturge weber Facebook support group and she is the chair of the committee of Sturge Weber UK - it was lovely speaking to her and I'm so glad there is a support group and the Internet in general these days as it provides such a useful and supportive resource for me and parents alike to share experiences and offer guidance. I know people criticise emails and texts as being impersonal but I find them a godsend for asking quick questions and getting instant answers - even from consultants!
Anyway, as the coughing seems to have died down now in our household I best try and get some sleep! Night : )
My husband graham is raising money for Sturge Weber UK by doing a triathlon "iron man" event in June 2013. He has a just giving page on www.justgiving.com (type in Hallie Davidson and you'll find him) - donations welcomed please :oD
I'm also trying to do as much as I can too to raise money and awareness for the charity - I have a stall at my son's school Christmas fair on 6.12.12 - I'm going to be selling Christmas cards, raffling a very special cake donated by a very kind friend Hazel and I'm going to raffle a big cuddly bear : ) marlcliffe school have also kindly agreed to ask a few pupils to design special Christmas cards which will get printed up hopefully next week so I'll be selling those on my stall too along with the Sturge Weber UK wristbands and sweeties and children's wooden jewellery too : )
I'm also organising an Usborne book party for 1.12.12 for all the parents in my son's class YR DR and 10% of book sales will go to Sturge Weber UK - any parents who are interested please contact me ASAP as at the moment I don't have enough to hold a party unfortunately : ( - I'm planning on providing wine and food as a thank you for coming x
I've spoken to Jenny Denham this weekend just gone about my fund raising ideas - she is the first person I have chatted to from the Sturge weber Facebook support group and she is the chair of the committee of Sturge Weber UK - it was lovely speaking to her and I'm so glad there is a support group and the Internet in general these days as it provides such a useful and supportive resource for me and parents alike to share experiences and offer guidance. I know people criticise emails and texts as being impersonal but I find them a godsend for asking quick questions and getting instant answers - even from consultants!
Anyway, as the coughing seems to have died down now in our household I best try and get some sleep! Night : )
Thursday 15 November 2012
Neurology appointment finally!
After spending the last four weeks worrying about what the scans of hallie's brain might show, today we got a proper chance to view the numerous scans and put our questions to the neurologist. Although to be honest I don't feel I have learnt much more about hallie's condition other than where on her brain she has the birthmark (patch of blood vessels/stain) whatever you want to call it!
Hallie has a patch of blood vessels on the right side of her brain, underneath where the port wine stain on her scalp is. You can't really see the port wine stain on her scalp because of her beautiful mop of hair : )
The neurologist then did a few physical tests on Hallie to rest her reflexes and how she used each side of her body, particularly her hands. Hallie wasn't that co-operative but that's not surprising since she woke up with a stinking cold this morning. He said he wasn't too worried about how she was using her hands at the moment but she would need to be checked regularly as these things usually become more obvious as a child reaches 12 months.
He didn't really put a plan in place and said the usual "it's a case of waiting to see" which is extremely frustrating. I wish I knew exactly what was going to happen Hallie and when.
Now we have the Great Ormond Street appointment in December to look forward to - I am looking forwards to meeting the consultant at their Sturge Weber Clinic as my friends in the Sturge weber UK Facebook support group have sung her praises many times and I'm hoping she will provide us with a lot more information (which will hopefully make things a lot clearer as I feel a bit fuzzy at the moment)
Thanks for reading : )
Hallie has a patch of blood vessels on the right side of her brain, underneath where the port wine stain on her scalp is. You can't really see the port wine stain on her scalp because of her beautiful mop of hair : )
The neurologist then did a few physical tests on Hallie to rest her reflexes and how she used each side of her body, particularly her hands. Hallie wasn't that co-operative but that's not surprising since she woke up with a stinking cold this morning. He said he wasn't too worried about how she was using her hands at the moment but she would need to be checked regularly as these things usually become more obvious as a child reaches 12 months.
He didn't really put a plan in place and said the usual "it's a case of waiting to see" which is extremely frustrating. I wish I knew exactly what was going to happen Hallie and when.
Now we have the Great Ormond Street appointment in December to look forward to - I am looking forwards to meeting the consultant at their Sturge Weber Clinic as my friends in the Sturge weber UK Facebook support group have sung her praises many times and I'm hoping she will provide us with a lot more information (which will hopefully make things a lot clearer as I feel a bit fuzzy at the moment)
Thanks for reading : )
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