Lewis Jeynes: My life at the moment and how I feel about it

Tuesday, December 05, 2006

My life at the moment and how I feel about it

Its quite hard to say how I feel at any given time. Some days I am quite positive and upbeat and other days I just want to die. But of course I have two huge responsibilities which keep me here and I have to think of those, my two sons who love more than anything or anyone in the entire universe! Tomorrow (Wednesday 6th December) Lewis' bath lift is being delivered from the Red Cross! So excited! It will be so great for Lew to be able to play in the bath and enjoy it again! At the moment we have to hold him like a newborn baby and so its very very difficult as he's very heavy and he hates to be laid back, it causes a reflex anoxic seizure. So when his bath seat is installed, he'll be able to enjoy baths again, once he gets used to the sensation of moving up and down on the lift!!!! We are still waiting for Lewis' jenx giraffe chair, but when it arrives it will be soooo fab! Jessica (our occupational therapy lady) is just fantastic! She has been so good to us and has made sure she has communicated with us regularly to let us know what is going on, and she is so genuine and caring, I hope the NHS appreciate her! Kath and Janette, our physio ladies, are wonderful too! They really truly care about Lewis and on our very frequent visits to DRI, they have made sure they have come and spent time with Lewis on the ward and tried their best to make him comfortable. Dr Mordekar, our neurologist, is fantastic! He has helped us so much with Lewis' ongoing deterioration and has tried so hard to support us. He has continued to look for a diagnosis for Lew and he insists that he will find out what is wrong with Lew and he will help us as much as he can, and he is such a genuine, kind man, I totally believe him. We are seeing Dr Mordekar on Friday at 9.40am. We are also seeing a metabolist, Dr Shammas (I think) at Sheffield on 19th December and then early next year Lewis will have another MRI to see if there have been any changes. We know that Lewis has been tested for battens disease but we dont know if they have any firm diagnosis on that yet .. I guess we'll find out on Friday.

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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