Busy, busy!

Last weekend we travelled to Manchester for a lunch and panto arranged by the MPS Society. As well as other MPS and related diseases we got to meet two families with young boys on the MPS II intrathecal trial. This was so good – Facebook contact has been great and so useful at times, but there is nothing like meeting people face to face and being able to have a good natter (in between dashing off to catch one or other of the boys!) with someone who knows exactly what we are going through.

The panto – Jack and the Beanstalk – was done by a small travelling company who set up in the conference room where we also ate. As usual, Pudding wasn’t very keen on sitting still but I kept him in my patent Mummy cuddle for most of the time. I’m well practised at wrapping him up in my arms and legs, and it tends to keep him calm in a number of situations. But of course, in a room with plenty of other MPS kids he wasn’t the only one  who wanted to roam, so by the end I let him. The actors did very well dealing with all the pitch invasions; Pudding was very taken by the cow, and kept asking one actor, ‘Where de moo?’ while peering back stage. He also enjoyed dancing and got to use one of his stock phrases, ‘Behind you’, in context!

IMG_6603 And then, of course, on Wednesday we had our first home treatment. I was a bit taken back by the size of the delivery we got beforehand, but the homecare nurses soon had it sorted into fewer boxes, and took away the 11litre sharps bin and IV stand that weren’t needed. So we’re just left with one large box of pre-meds and equipment. And the highly expensive, life-altering enzyme in our new medical fridge. Magic stuff!

The ERT itself went as expected – we’ll soon get used to the new routine. True to form, Pudding wouldn’t wear the bag that the pump comes in, so we had to follow him round with it. Mostly he watched TV but he also demonstrated his trademark sudden darts into the kitchen, catching by surprise whoever was on bag duty at the time. When not on duty myself I was able to get on with some house stuff. I was surprised at how emotional I got – after 18 weeks travelling to hospital, something as simple as being able to do the washing up while he was having his treatment was suddenly overwhelming.

IMG_6601The other thing I got done this week was a long overdue sort out of paperwork. Disability Living Allowance, portage reports, inclusion funding applications, My Support Plans, consent forms: a special needs child generates a LOT of paperwork, and I have realised that this is responsible for many of my dips in mood. Some weeks when I have felt on top of things – staying positive and living in the moment – it has all come crashing down when I read the latest assessment; ‘_ _is behind his chronological age in all areas of development…’. I know he is making progress still at the moment, but seeing in stark black print that he is lagging further and further behind his peers is often an unwelcome reality check.

Then coming up next week we have appointments for the wheelchair service, trial screening, and speech and language as well as the weekly ERT. And Twiglet has started badgering me to put the Christmas decorations up…

Comments

  1. Liz

    Great post! Know exactly what you mean about being with families who are experiencing the same, which I guess is why I do so much DS group stuff… Having a child with such a rare condidtion must make that sooo much more difficult. And paperwork! It’s forests worth and definitely a job in itself – and i try to look at it as would paid work. Try to put my “work head” on when I do it and try to detach – not easy. I once guesstimated that I spent approx 1 day a week “doing T’s paperwork” It’s better now but I fell way behind on the filing… we have paper everywhere… mostly two huge piles of unsorted paper… I try to do as much as i can electronically now because things are so much easier to find that way… and if some piece of paper arrives that is “important” (eg DLA award, ) I try to remember to scan it …. but don’t always remember!

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