Tuesday 5th November
I’d just sat down at the meeting, the first speaker had stood and was about to start talking when my phone buzzed.
I’m away from home, in Israel attending a meeting for work while Emma and Mattie are back in hospital in Dublin for Mattie’s check up. Waiting for news, when the phone buzzed I grabbed it eagerly.
The Check Up Results are In
Emma had just arrived at hospital and had texted to give me an update:
"His genetic screening came back clear - it's official :)"
This was great news. Infantile spasms can be caused by a genetic disorder. The hospital had taken a blood sample from Mattie when he was first admitted to check for this. It takes a long time to run the relevant tests. We had only just got the results back – and it was great news! It means that Mattie is officially categorised as “idiopathic”; subset of all infantile spasm suffers who happen to have a great prognosis.
30 minutes later, after Emma and Mattie had seen the Doctor, the news was even better:
"Our boy is amazing! :) they are delighted with him :) aren't concerned about the eye flutters only said if we see it in clusters or out of waking that we should be worried :) see them in 3 months and an EEG in the middle :)"
It speaks for itself really! We are delighted. He’s not out of the woods, he’s still on his medication and we have to watch him. But it does mean that the medication seems to be working! – we’ve still got to watch him just in case, but it does give us so much reassurance that his development is ok.
… Now I’m pretty sure there is a meeting going on ….
The Disney Expression
After the appointment at the hospital Emma took Mattie to the Disney store in Dublin for the very first time, his expression is brilliant: