Celebrations!

Two very good pieces of news at the hospital today. Firstly, my DNA results are back and I don’t have the same mutation as Pudding, so it was a spontaneous change on his X chromosome. If I did have another son (which definitely ain’t gonna happen!) there would apparently be a slightly higher chance of […]

Cross fingers

If…and I have to keep repeating this one to myself… if, Pudding’s temperature behaves itself again this week, we will be able to start having infusions at home. Trying so hard not to get too hopeful about this one. In other news, I saw a lovely man at the hospital last week. He made me […]

A choice

I’m sure that any parent of special needs children will tell you that it’s a roller-coaster of a life. Probably even more so when the diagnosis is of a progressive, life-limiting disorder. That’s certainly been my experience so far anyway. I’ve been through many emotions in the last few months: disbelief, dawning realisation, depression, anxiety, […]

Taking stock

One of the questions I found the most difficult to answer was back in August. Pudding was having a slight reaction during his infusion, so they needed to get a doctor to sign off some extra meds. She checked him over, then said, ‘So he has MPS I?’ ‘No. MPS II’ ‘And how is that […]

Angels in disguise

Every time I think I’m coping well again, it seems like I get hit back down. I’ve avoided posting on here in the last few days because I was well and truly in the slough of despond. Nothing seemed worth the effort and I was crying every day. My hair was shaved off, my release […]