Back in hospital

Tonight Shay has been admitted to our local hospital. At gosh today he was in so much discomfort from the LP and the Port op that he is becoming exhausted. From early this evening he has been cramping up in agony around his liver region. He is unable to stand or do anything that requires him to move. Phoning the hospital I was calmly told that they had no beds and really had to push my point and told them in an equally calm way that really there is no choice and I am bringing him in and to pull his notes so they can do a bit of reading. The doctors and nurses that I know are fab but when you speak to someone that does not know Shay it can get frustrating to the point where I had to start name dropping and was very willing to phone his consultants up personally.

Shay has had an x-ray on his chest and abdominal region. His chest was clear and his abdomin was a bit unclear. So to be cautious they have admitted him tonight to watch over him with Daddy by his side. Shay's pain seems to come in waves and on leaving both of them his stomach was making noises and his bowel was soft. He does have a slightly enlarged liver that they were able to feel eventually but no temperture. It looks like Shay will be having a scan in the morning just to see what really is going on inside him.

We want the best possibly care for our little man and his team of consultants have been absoultely brillant with Shay. Things have happened extremely quickly for Shay and we got a diagnosis quickly compared to others. The hospital visits are taking it's toll and I find it hard to keep the frustration out of me when I am asked the same questions over and over again regarding Shay. Simple silly things, how many times do I have to repeat what faith he is? What's his diagnosis? the whole point in having his special little green card I thought (with diagnosis blazened across the front) is to let others know to get the notes and read what's in them. Thank God that both our children has parents who are on the ball constantly because if we were anyother way who knows what might happen!!!


Shay was in GOSH all day with tests being done on his eyes. The jargon of it all was completely overwhelming and we are now having to get our heads around not only what is involved in hematology but now also the workings of the eye.

With one of Shay's eyes the muscle will move and the eye does not follow immediately, the specialist did mention that he won't at this time need an operation to correct this. They also noticed something unusual which is his left eye doesn't send messages over to the right side of his brain. The tests on his eyes were so far advanced in technology that we are now waiting for a report to fully understand what all this means. They think the pigmentation in the eyes could be that dad is pale and I am olive skinned and this could be our genes mixing to cause this. They now have a baseline of what his eyes are like and we will be going back in 6 months for the same tests to see if there are any changes. Shay was again the model patient today with electrodes attached to his skull and face. Even with the pupil dilating drops that stung him he did not complain, not even once. As most of you know Pearson syndrome attacks the eyes and Shay's risk of this happening to him is still extremely high along with him losing his hearing, todays news has not at the moment bought much relief to us. Until we get the report through and we can understand it more fully will we be able to take everything on board and look at the results alot more closely.

I know I keep saying this but he is such a strong child who just keeps amazing us, we are so proud to have the honour of being the parents of a very special boy.