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London, United Kingdom
Welcome to Shay's story and thank you for taking the time to find out how Shay is doing. It is a place to share our hopes, sadness and the happy times that our little man has. Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. It characteristically present in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea. Additional manifestations often include progressive external ophthalmoplegia, proximal myopathy with weakness, and neurologic disturbances. Multiple organ involvement is quite variable. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. These children eventually undergo a transformation from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation and episodic coma. Life as we use to know it I cannot remember. We have to live in hope that a miracle will happen for our son.

Monday 13 July 2009

Port Op!



We are now back home (late) and Shay is tucked up safely in bed feeling a little bit sore and tired.
Today has been another emotional rollercoaster, with both of us feeling so many different emotions and in the back of our mind thinking if a port is the right thing for Shay.
Yet again Shay was an absoulte star letting the doctors and nurses do whatever they wanted. Our son is totally amazing with everything and even if he finds a procedure uncomfortable he will just keep still and let them get on with it.
Shay was down in theatre for 1.5 hours today, waiting in the ward the time seemed to drag by.
When we were called down Shay was fast asleep he opened his eyes for a few seconds looking disorientated then fell back to sleep. Even on the long trolley ride back to the ward his eyes kept fluttering open for a few seconds then he would fall back to sleep.
Shay is obviously in pain from the wound in his neck and chest as he wanted us to take the dressing off when we got back home. In his young mind he thinks if the plaster comes off then the pain will go away bless him.
The worst by far has been moving Shay around. Lifting him from underarm is causing him pain as well as the wound from the lumbar puncture on his lower back.
Shay cannot bath for 5 days and we have been warned that he could have a lot of bruising under his chest due to them tunneling under his skin for the port.
Shay has had no problems today apart from trying to catch a urine sample which he seemed to know everyone wanted but he wasn't giving up that easily. Cotton wool balls in a nappy catch this perfectly, that's of course with Shay participating with everyone :). In the end we manage to get a whole 16ml from our stubborn little boy.

Shay is back at GOSH tommorow for his eyes so hopefully we just might have some good news.
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1 comment:

  1. KarenTue Jul 14, 01:11:00 pm 2009

    What an angel!
    Good luck with GOSH - hope it is good news.
    Much love
    karen

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