No hospitals (until today anyway), holiday lie-ins, and lots of normal school holiday fun. Rose finally caught up with Felix who broke up weeks ago (or does it just feel like that) and finished her mornings at school last Friday. The plan is that next term she will go back in the afternoons although covering the two hour lunch break seems to be a problem so to begin with she will be coming home for lunch and going back for a couple of hours in the afternoon - another term of any kind of gainful employment/life disappearing into the blue. I vaguely remember life outside SE21 but can't be sure.
There hasn't quite been an Easter holiday physio amnesty but there's definitely been a lot less than normal. Last week I took her to the community physios' HQ to have her splinted from hip to ankle in a plaster cast which she will just wear at night to coax her leg into a 0 degree position. She wasn't very happy and I predicted nightly stress trying to velcro her into it but actually it's great, surprisingly comfortable (possibly not when the weather hots up!) and is definitely doing the job. Whenever we've tried not using some kind of leg splint she gets up with her leg stuck at -20 degrees and then can't walk at all. Not sure how long we'll have to do it for but anything that helps her get going has got to be a good thing. Combined with my other new physio initiative we are making good progress! Having used the treadmill with Amy during physio to really good effect (straight leg, reciprocal gait, lovely long stride) I decided that what we really needed was one of our own! Having used up our charity funding ticket on the trike I googled away until I found a cheap one to hire (inspired!) and it is now sitting in the middle of the house taking up lots of space, looking really ugly and doing a really great job on Rose's bent leg. We have even tentatively started to try a very slow jog but Rose's brain has completely forgotten the co-ordination of her feet and brain to do it and she gets very frustrated - for which read wildly and uncontrollably furious - so sticking at a nice slow walk at the moment. Secret agenda was to get Simon on to it every morning for 20 minutes and watch those two or three extra pounds (!) fall away but so far no good - if I left a trail of creme eggs to it perhaps I'd be getting somewhere... Anyway so far money well spent - and no, there is nothing we wouldn't try to get Rose back on the pirate ship. She's doing so well that the physios are going to start pulling back (aagghh) - with the swimming and the treadmill and the trike I have slightly shot myself in the foot as they can see that we are progressing so the sessions are going to become fortnightly after Easter and only five more hydro sessions for the rest of this school year. I'm dreading this as the moral support has been amazing and Rose responds far better to a 'professional' nagging her than she does to me but I know they are right and like everywhere else in the NHS they have lists and lists of new referrals all the time who now need them more than Rose does. We are hoping that with a supporting letter from our consultant the insurance company will keep covering our top up sessions at Crystal Palace so I won't feel totally alone with Rose and our home gym! The reality is that there is less and less to work on as it's really just a question of building up her stamina and practice, practice, practice. She hasn't used her crutches for weeks (tough love - we just don't let her anymore) and gradually she has walked further and further and further. Amy has brought hockey sticks, tennis rackets, velcro tennis and swingball to the house, her trike is finally here, and we are starting swimming lessons again next term. Apart from the thumping limp and bent knee you would hardly know there's a problem!
So apart from all of that she's having a regular old time - play dates here and there, arts and crafts at the Picture Gallery, swimming, cinema, staying up late, waking up late and everyone loving the break in routine. It was all going swimmingly until a couple of days ago in the pool she suddenly wailed in pain and showed me her tummy. Just when I thought the gastrostomy had finally rolled over and kicked its legs in the air the site where it's healing (or clearly not healing at all) has sprung a lovely infection. Good Friday clearly not Good Friday at all without Rose making an appearance at Kings - cue bitter irony - but happily this time it was brief and efficient and armed yet again with anti biotics we have come home to try and kick the bloody thing into touch once and for all. We've had a fabulous day here with friends, a huge Easter egg hunt in the garden because you just can't start eating chocolate too soon at this time of year and tomorrow we're going away (yes AWAY!!) to Suffolk for a few days and I CAN'T WAIT. We're not taking the wheelchair, we're not taking the crutches, we're taking lots and lots of wine and even more chocolate and our two amazing, gorgeous, beautiful children.
