Happy Easter (and a fortnight to go...)

Happy Easter everyone!!!

It has been a busy few days. We have had teething problems with the new TPN pump and some hitches with the bloods we have been taking for William's IV antibiotic levels. Things go wrong with equipment and procedures all the time, take my computer and recent death of my mobile phone for example. These things cause us huge problems, we loose people's phone numbers and, until my computer is fixed, I have no access to all my photos and most of my music collection. Medical equipment is a different thing alltogether and causes us HUGE amounts of stress when it goes wrong. It always seems to at holiday times too. It was Christmas when William's hickman line split. The pump teething problems are difficult, not least because those who would normally be our support system in such matters are not yet fully used to the pump so are none the wiser about the problems we are having than we are. The pump is fine, it is the giving sets that tend to leak or occlude... Yesterday we had to start again with the old (and now illicit) one but today, so far so good. It took us 3 attempts to get William's blood test right though. First we used the wrong bottle, next time the sample clotted and the ward told me to throw it away. We were later told by the doctor that the blood cells were meant to clot, leaving the serum in which the drug levels are tested. It was a special bottle and a special test. I think people can assume we know everything because we do so much for William at home. We are still on a steep learning curve though and this antibiotic (amikacin) is not one we have used at home before. Well, we know now so that is one further step up the curve.

Despite all this, we managed to have a lovely family Easter. The girls enjoyed the Easter egg hunt after church. The Sunday School leader had thoughtfully bought William a magnetic scripture verse for his wheelchair as he can't eat the chocolate. In place of eggs at home,among other gifts, William was pleased as punch to get Thomas, Percy and James T-shirts and a Henry to add to his engine collection. He is OK at the moment but very pale and tired. He is really lacking energy to play for more than short periods before needing a cuddle with his "blankie" to re-charge. We plan a day at the farm tomorrow so hope the fresh air will give him a boost.

Today is 2 weeks exactly until the London Marathon. The scary thing is that there is now nothing I can do to get any fitter for the day. I missed a lot of training last week with a bug and, rather annoyingly, the sunny weather has bought hayfever with it for me so my asthmatic lungs are beginnng to ask me what on earth I think I'm doing! Not in a big way though (so Mum, don't worry!!!) more with some irritating little coughs and sratchyness and the need to puff on the inhaler a bit more regularly. It is easy at this stage to find every run, no matter how short, harder than the 20 mile runs done over the last few weeks and, therefore, panic about finishing the marathon. This is normal and termed by some "taper madness". Training tapers down now as there is nothing that can be done to improve fitness and rest and relaxation to muster strength for the day is the priority. I guess, it is like stuffing up your lines on a dress rehearsal and forgetting that you know them like the back of your hand. I have been looking over my training schedules and seeing how far I've come (literally as well as metaphorically!!!) and am confident that, as long as I don't catch any more bugs in the next few weeks) all will go well on April 22nd. I am really looking forward to it. Including some more money raised offline, I have now reached my target of raising £2 000 for CHASE Hospice Care for Children. If you have been following this blog, you will already know how much they do for our family. I hope to raise a bit more over the next few weeks, not least because Paul hasn't sent the plea to his friends yet as he is saving it for the last minute when the marathon is on people's minds. It would be wonderful if I could reach £2 600 and make it £100 per mile - that would be such a good motivator in those last, painful miles.