Tuesday, May 30, 2006

2nd May 2006

A roller-coaster day that has become the norm.

Last night was not an easy one for Tom or, consequently, us. He can't settle for any length of time and frequent observations/drug administrations are greeted each time with apoplectic indignation sending the pulse meter off the scale. We manage a few hours sleep interspersed with relay brow-stroking.

Then, shortly after we reach a vaguely concious state and the morning has properly broken, Tom starts chatting. Was that 'Mummy..' we heard?

He sees the phone and names it, 'Cbeebies', 'Builder..' is requested and off he goes. A busy half hour of his gorgeous little voice and then...a day of him being mostly fed up.

Tom seems very sleepy but just can't nod off and we're suddenly back where it all began and I'm seeing fits. The doctors try to reassure - if they are fits, they're small and won't harm him. This is little consolation.

Later in the afternoon, after some snoozing and a visit from the consultant, Tom perks up. We have the most special hour with Tom on my lap. Peepo games are played, tickling is done and Tom moves through his repertoire of favourite words and phrases, 'My daddy' being a personal favourite.

He still has trouble controlling his head and we're pretty certain he can't hear but our boy is back.

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