Time passes. The worst passes. Reading back some of these earlier entries, I am taken by surprise at the raw emotion – a sign that things are so much better now. Yes, I had an attack of the wobbles last week, and I can’t imagine ever truly accepting with equanimity what we are facing, but I have come to a calmer place. We are still waiting for the results of the DNA test which might tell us what prognosis to expect. But they may never be able to find that rogue gene. Until that time this is becoming our new normal.
This week we went to Manchester on Monday instead, as we had an appointment for his ECG. I had thought previously that having a portacath would make things less stressful but Pudding has other ideas about that. He has never liked being dressed/undressed, nappy changes or generally being messed with. Accessing the port to stick the gripper needle in or take it out, therefore requires three of us to hold him down. I feel so sorry that we have to do this to him. He doesn’t understand why he’s there, or what a difference these infusions will make to his life. All he wants is to get up off that bed and go play. I’d love to let him.
As they’d changed the pre-meds this week and didn’t give him Piriton, he also wasn’t as drowsy, so didn’t have his nap on the busy ward. Uh-oh! Didn’t bode well for ECG! Too right… Jane mananged to distract him with pictures on her phone for that bit, but we had to pin him down for the ultrasound. Good news though; although the heart muscle was thickened, this hasn’t yet affected function.
Getting the Manchester trip over with early in the week has meant that it now feels like we’re having a holiday from it. Had a lovely day on Wednesday catching up with some good friends. And yesterday, I was able to drop Pudding at preschool to be looked after by the lovely ladies there. Walking home in the sunshine with no buggy to push, I felt lighter than air. I love my sweet, simple boy so much, but a few precious hours to do writing, or tidy the house makes all the difference.
And one really good piece of news from this week – as of November we should be able to have the ERT done at home. Hoorah!