Lewis Jeynes: Update

Friday, February 20, 2009

Update

Sorry for the delay in getting this update done. We only just got the internet back!!! We went to see Dr Daymond at Nuffield Hospital in Newcastle and Lewis was immensely brave, having his examination and his blood tests. You are a champion Lew!! We now have to wait 3-4 weeks for the results of the blood tests for Lyme Disease - fingers crossed everybody! Also, Dr Daymond has discussed Lewis' condition with his colleagues and we are hoping to see a specialist - Dr Julu who is a Consultant Neurologist at Breakspear Hospital and Royal London Hospital. He the leading specialist in autonomic nerve function and he recommends that he should see Lewis for Cortico-bulbar function to study the Brain stem function and also to have an MRI of this area. Lew was due to have surgery on his hips at the end of March - we have asked for this operation to be postponed as it involved cutting Lewis' muscles in his thigh and of course muscle cannot grow back - so we want to see what happens with the Lyme tests and seeing Dr Julu before we go ahead with the surgery. So things are moving again - lets hope we can get some good news for Lew.

5 comments:

Anonymous said...: *crosses fingers*; 20 February 2009 at 12:10
Anonymous said...: Samantha---this note is from Doug Tolmie in Seattle. There are Tolmies in the UK, the US, Canada and Australia (and probably a few other countries) and, based on what I know, we're all descended from the original clan in Scotland. So, I suspect I am a distant cousin of yours. My computer alerts me to news about anyone with the last name of Tolmie and that's how I found your blog about your son Lewis. I'm responding because here in Seattle I am a television and event producer who has produced hundreds of stories on children at Seattle Children's Hospital. I just want to acknowledge you for documenting Lewis' story---you do an excellent job. My heart goes out to you, Lewis and your family---and I pray the means will be found to restore Lewis to better health. Best wishes, Doug Tolmie - dougt@storycom.com.; 21 February 2009 at 01:05
Kath said...: What a brave boy Lewis. I do hope your family will soon have some answers. Lots of love KAth x; 22 February 2009 at 12:19
Joanne said...: Good to hear how your visit went.

Good luck with test results.

Pleased to hear you are to see DR Julu heard he is very well respected in his field.

Look forward to some positive news.

Best wishes; 22 February 2009 at 16:59
Anonymous said...: Can't wait to hear how things go.... love you all. Yolanda; 23 February 2009 at 19:54

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The Lewis Jeynes Fund

The Lewis Jeynes Fund was established to provide care and support to Lewis Jeynes and the success of the Fund has meant that we have also been able to purchase specialist equipment for other children with undiagnosed neurologically degenerative conditions in Doncaster and the UK.

Lewis and his friends around the UK all suffer from acute and undiagnosed life limiting or terminal conditions and very often specialist equipment is difficult to afford due to the changed circumstances at home. This is where the Fund can provide vital assistance to those in need. All of the proceeds of the Fund go straight towards helping Lewis, and other children and families like him and us.

Contributions should be sent to The Lewis Jeynes Fund, 15 Kentmere Drive, Doncaster, DN4 5FL or by BACS to Nat West Bank, “The Lewis Jeynes Fund” Account No. 35662565 Sort Code 60 06 39. You can also go into your local Nat West Bank and pay into the Fund over the counter.

i love you much (most beautiful darling) by e.e.cummings

i love you much (most beautiful darling), more than anyone on the earth and i like you better than everything in the sky -sunlight and singing welcome your coming although winter may be everywhere with such a silence and such a darkness, no one can quite begin to guess (except my life) the true time of year - and if what calls itself a world should have the luck to hear such singing (or glimpse such sunlight as will leap higher than high through gayer than gayest someone's heart at your each nearness) everyone certainly would (my most beautiful darling) believe in nothing but love