Still no answers...

Hiya,

Just a quick one to say we had an appointment with Fiona, Patrick's neurologist today to get the results of the extensive load of blood tests etc

There are still a couple of results outstanding but so far everything has come back normal.

I suppose this is good news as they are able to rule a lot out but it would be nice to know what we're dealing with.

So, it's another waiting game now. They're waiting on a couple of the genetic test results to come back which could take another month. By the time they come back it will be time to do another MRI scan and then we'll see if there's been any more loss of tissue.

If these other tests come back normal and they draw a blank on everything then it will be time to speak to Great Ormond Street. Hopefully we'd be able to just send his notes up rather than have to go up ourselves as I think the disruption that would cause would be a nightmare. Anyway, we'll cross that bridge if and when we have to.

In general though Fiona was really pleased with Patrick. He looks well and was fairly alert when she saw him so she was able to see that he responds well to people and behaves appropriately, rubbing his eyes when he's tired, moaning if you take his dummy away, simple things like that are all positive things. At the moment we can safely say that he's not losing any skills, he's not necessarily progressing much either but Fiona repeated what she'd said when we first got the scan results, she can't believe from looking at him that the results were so bad, it just doesn't make sense.

Anyway, I guess time will tell.

For now we're back to carrying on as normal, with that said I have a hungry Patrick to feed.

Lots of Love

xxxxxx