Shay had his consultation at GOSH for his heart. He was a star when he was being examined and done everything that the doctors wanted him to do. Shay's heart on the scan is perfect and his ecg was normal. Just the news we were hoping for, which for once has made us extremely happy.
I did mention his liver to a nurse and asked what the 2cm edge meant and she said it did mean Shay might have an enlarged liver. We will know more by the end of July on this.
Shay has a big day looming with his port, lumbar etc it's been hard to try to keep everything normal and carry on like everyone else. There are so many things going on at the moment that sometimes the stress of everything just boils over. We have been noticing more and more Shay's eyes are very delicate and he now wears his sunglasses when he is out constantly. When he gets out of bed the light really affects his vision and he is sometimes known to have his glasses on when he is brushing his teeth. Again we will know the full extent of what is wrong with his eyes by the end of the month and hopefully he just has sensitive eyes.
Praying for a smooth day next week for Shay and hoping everthing goes as planned
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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