After numerous phonecalls this morning it was decided that Shay needed another full blood count done for his forthcoming biopsy. This is to make sure that his levels are high enough for him to have a general, otherwise his blood transfusion will be Monday coming instead of the Friday.
As soon as Shay saw the tegaderm plasters and cream Bless him he asked to have his cream on. He really is a courageous little boy with everything that he has to put up with. Next Week is going to be a full on week for Shay with many hours spent in hospital.
Shay's Hb has dropped again since Tuesday but his platlets are back up which is great. He will not need the transfusion on Monday now but is still booked in for next Friday.
Hb - 7.3
Neurophills - 0.4
WBC - 3.3
Platelets - 120
About Me
- Shay
- 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.
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