It’s been an odd few days. Mostly in a good way.
Most significantly, I’ve been feeling a bit more stable again. Although this pathway through the Hunters diagnosis is full of rocky places and stumbles, every so often we get to the top of a small hill and the view makes up for some of the hard bits.
Hubby came with me to Manchester on Wednesday so we could talk to the consultant together about Pudding’s future and the possibility of getting him on the trial of intrathecal enzyme. This introduces the enzyme directly to the spinal fluid in the hope of reducing deterioration of the brain and possibly even improving function. It would involve more trips to Manchester and, if he is randomised to the treatment arm of the trial rather than the control, more interventions including general anaesthetics, so it’s not a decision to be made lightly. The first phase of the trial gave very mixed results, so we can’t hope for too much at this stage. But if he’s eligible we will likely say yes. Even if it doesn’t benefit Pudding, it may benefit others in the future. And we know the inevitable outcome if we do nothing…
Next thing on the list was a visit to our nearest special school. Pudding is due to start school next September so we’ve begun to think about where is best. Special school? Mainstream? Mixture of both? Another difficult decision to think about.
Yet yesterday morning before the visit I found myself humming while sorting the washing out. I had made contact with another Hunters mum after seeing her blog online, and then happened across someone else’s too. By the afternoon I was added to a Facebook group, and had friend requests from 10 others. It meant reading some pretty difficult posts about boys further on in their disease progression, but somehow that mattered less than suddenly being part of this community who knew exactly what I was going through too.
Then this morning the first thing I saw online was a comment from a complete stranger on my fundraising page. She had seen our story in the local press and wanted to make a donation. That fills me with hope for the future of our boys.
And perhaps best of all, Pudding is doing really well with his language at the moment – playgroup report that he is echoing more words and using some new ones spontaneously. He has even said a verb (‘pull’ to ask for help with his banana, and when singing ‘Wind the bobbin up’) and a personal pronoun (‘me’ pointing to himself when we ask where he is). Huge milestones!
I know I’ll probably be hit by another body-blow soon, but it is becoming easier to deal with them. We will get through this.