Shay is utterly amazing! Today he pointed to his nappy and said "wee mummy". To my surprise he sat on the potty and suddenly performed. Now I'm not talking little dribbles here but he actually filled the pot half way 'wey hey'.
When Daddy was home Shay was all pleased with himself and again pointed to his nappy to tell Daddy he done a wee. Shay had to pull his Y-fronts off and sat on the potty and he concentrated and tried and squeezed to no avail. Poor thing he looked so disappointed that he couldn't do one for Daddy.
We know how we will be spending the school summer holidays this year; back and forth to the toilet and with desperation looking for a toilet when we are out.
The doctors at GOSH are closely monitoring Shay's development and his toilet training was discussed last time. This is all down to our very independent son we cannot take any credit for preparing him to come out of nappies, well done Shay.
More results for Shay hopefully next week
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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