Thursday, 30 December 2010

1, 2, 3,... panic!

For a few weeks, our mantra has been "four weeks after Christmas day", repeated seemingly every time we talked to anyone. Well, the big fella has been and we have had a bit of "quality family time" (in amongst the various coughs, sniffles and general feeling crappy) and had the obligatory trip to the Next sale to get some supplies for the trip. Un/fortunately they were out of shell-suits so I need to reconsider my travel clothes arrangements. Me and Loup even managed what could be our last "date" for some time (thanks to the baby-sitters).... So, Christmas is pretty much done and now we look at the calendar and it's three weeks and two days. Think this is where we engage panic mode. So many things to finish off. Flight details, money arrangements, taxis and transfers, borrowing suitcases, confirm hotel, etc, etc, etc. All of this is, of course, distracting us (thankfully?) from the actual reason why we are going there and what is going to happen. We will get to that particular bridge when we come to it. Evan is coping brilliantly with everything and almost seems to be looking forward to it (mainly because of the seafood restaurant that he has decided we are going to for the big bucket of shrimps).

Anyway, must go - got some panicking to do....

Sunday, 19 December 2010

What's in store?

Now that we have "got there" (in one sense) people are starting to ask questions about what will happen when we actually do "get there" (in the truer sense). The honest answer is that we don't totally know. We know the times of the flights, where we are staying, when we have to go to the hospital. We also know enough about the operation and the recover afterwards - but the reality will need to be filled in when we get there. How cold will it actually be, how much of a pain will the various transfers be, what will the breakfast be like, can we find a video-game store (most, most, important), what about the jet-lag, how will Evan react when we get to the hospital, and how will we react, and a million more questions that pose themselves at 3am. However, the following might be useful if you are interested. Get Mitchell to America . It's really close to what we will be going through - staying in the same hotel, same op, same hospital, same doctor and perhaps many of the same problems. It may well give you loads of info - it has for me!

Wednesday, 15 December 2010

Flippin'eck it's Christmas next week...

...yet still we have our minds on other things. Dont worry, we are just about done helping Santa getting everything in order but the days are going far too quickly.... 38 days until we go with only 17 work days left before then !

We met up with Ben ( and his family at the weekend. They go on New Years Day and the parallels between Ben and Evan is amazing. Hope everything goes ok for them, and we look forward to meeting up in St Louis.

As you do at this time of year, we went to Evan and Sam's school for Sam's Nativity performance on Monday  (He was 3rd Star from the right, in case you were wondering). Evan was playing out on his frame, which is something I rarely see - even at home, mainly because there isnt enough room in the house, there isnt time, the weather isnt great, he's too tired, etc... He normally gets chance to play out at school but understandably hasnt had chance with the snow on the ground. It really does affect his mobility if he doesnt get this exercise and it was a bit upsetting to see how bad his "walking" really gets after a while. His legs seem so small and so weak. He gets around fine, and of course he was happy - playing with Alex - but is really up on his toes and you can see how bad he gets. Even if, in the short term, the impact is that he can just get flat-footed it will honestly be worth it all. However, knowing Ev, im sure he wont stop there...

Thursday, 9 December 2010

Time flies by

Conscious that haven't provided an update recently, but been trying to put EBJ ever so slightly to one side (as if that was possible) so we can ensure Santa arrives, fully laden - well, laden. However, as ever, the last couple of weeks have been barmy (as in "very busy" rather than "very warm weather".....)

There was the Christmas Market and "Evan's Big Switch On" as well as front pages on both Keighley News ( and then Craven Herald ( Must admit, it was a very strange experience being in Sainsburys a couple of weeks ago. At the end of each aisle they have a news-stand which has 2 copies of the K.News on display, That's about 20 aisles! Is that how Cheryl Cole feels when Heat comes out ? erm, probably not quite.

Of course, there have been a couple of last events this year and money from previous events still rolls in, and we are also thinking about the gig/party which we really hope every one who is associated with "Team Evan" can come along, but the best bit recently has been delivering Christmas to the winner of "Win Christmas". I think "gobsmacked" sums it up pretty well...

We do, of course, have an eye on the trip and need to arrange the actual payment to the hospital as well as tweaking the schedule, sorting insurance, taxis, cash while we are out there, and this evening trying to work out the impact of jet-lag on the kids on their return. However, one step at a time.....