Hb - 7.6
Neurophills - 0.52
WBC - 3.31
Platelets - 76
Shay will be having another blood test on Friday 1st May and it is now looking like another transfusion is just around the corner for him.
His last transfusion has not lasted as long as we hoped so until a diagnosis is made he is just being given supportive care.
His platelets are the lowest they have ever been and Shay does take a longtime to heal from knocks and bumps and he will have bruises for quite a few weeks. We haven't noticed any changes with him bruising more than usual which is a blessing as he really doesn't need anymore problems at this stage.
Shay is constantly amazing us! At the age of two his co-ordination is fantastic he can now jump with two feet and is showing an interest in doing up buttons :0. His speech is coming on remarkably and can phonically sound out the letters you say to him with perfection (If you ask him to do this on command he promptly sucks his thumb and refuses to co-operate with us :0).
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.
Good luck with Shays blood test tomorrow.
ReplyDelete2 is a marvelous age - enjoy every moment!
Thinking of you all
Love
Karen and Pauline
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