Saturday, 19 September 2015

Forth Coming Operation

Hello everyone

Last Wednesday L went into school for a couple of hours and then we picked her up to take her to Manchester's Children's Hospital for her first pre-op appointment. We got there too early but parked up in the multi-storey car park anyway. The day was warm and sunny so we decided  we would have our picnic in the park opposite the hospital (don't know the name of the park). It's nothing special, lot's of grass and trees, a raised flower bed with railings all around it and lots of benches and picnic tables but nice and calm all the same.
Afterwards we made our way to the hospital and booked in by computer and found our way to the waiting room and waited to be called. We were called to take L to x-ray. She had very detailed pictures taken which she hadn't had done before and they took ages to do. Then back to the reception. We just sat down when we were called in to see our new consultant, Mr Tandie. What a lovely man. He talked to L and both M and me and explained what was wrong with L's back in great detail and what he will do and how.

L has Scoliosis which is curvature of the spine. L's spine has grown in an "S" shape and the way Mr Tandie says he is going to straighten it is by placing two rods either side of L's spine and pinning each vertebra and the only ones he's not pinning are the bottom two and the ones in her neck. This will leave her with reduced back movement. (ie It won't curl so no more roly polies) The consultant gave us the date of 19th October to not look forward to. Sooooo much information to take in and digest.

L is, understandably, very scared and was in tears a lot on Wednesday and was worried about dancing as she lives for her dance class. Luckily her dance lessons are very varied covering many different styles so I reassured her that she will still be able to do some like Tap, Ballet, maybe Cheer Leading. Last nigh we had a chat with her dance teacher and she reassured L that there will be some dances she can still do but may have to sit out of others but not to worry. Also in November there are some dance exams coming up which the class have been practising for and so that L doesn't miss out her dance teacher is going to film L dancing the set pieces and present the video to the examiner for him/her to judge. Which is great.

Next week we have to return to the hospital for a full day of tests and investigations a full body MOT. Another tough day. We also have a list of questions that we've all come up with so must remember to take them with us.

L and I had a chat with her year head and form teacher about her education during this time and have been great so far in organising what needs to be done right up to Christmas and what plans will be needed afterwards too. So far the support is good.

I found some pictures of Google images but couldn't get them on here.

Thank you for visiting


Update (02/11/15) - We have received our letter of conformation and L goes in for her operation on 16th November.

Wednesday, 9 September 2015

A Reflection of our Summer

Hello everyone

L went back to school yesterday into year 11 and I return to school today (shortly in fact). I enjoy the holidays when I can spend lots of quality time with L. M has had a little bit of time off but has had to work twice as much because his driver (M is a taxi driver) who shares the work has had 4 weeks off.

Some of the things we've done:

  • L's operation was put back so we had a camping trip taking L's friend with us - We all had fun.
  • Lots of walks on the beach and collected some sea glass 
  • Went to some local fun days
  • Ate lots of ice-creams
  • Spent the day at our local flower and craft show - sorry no pictures. I took my camera but didn't have time to take any pictures
  • Went to a travelling circus - We enjoyed this very much
  • Shopping for school uniform - No fun and oucho!
  • L and M rode their bikes through the Blackpool Illuminations - They had fun and want to do it again next year.  
  • Walks along the River Wyre with a stop off at the pub for refreshments before walking back
  • Decorated L's Room - Nearly finished and will do a separate post about this
  • We planned a video day for a rainy day where we would watch Scooby Doo all day - Didn't happen - it didn't rain. We can do this another day with maybe a Tom and Jerry day too
During the holidays I rang Manchester's Children's Hospital about L's appointment for her operation, as it was postponed from July to September, and I wanted to check that it was still on. It wasn't, it had been put back to December and could even be later than that so I gently complained saying that it had been put back four times already. After an interesting discussion, on the phone, it was decided that we would change consultant (there are four in the team) and L's name was put on the list that was the shortest. Over the weekend gone we received a letter from the hospital inviting us to L's pre-op appointments (2). The first one is next week and the 2nd one the week after. Next week we will find out what date the operation on her back will be. L was in a bit of a state afterwards and has wanted to talk about it every night, before going to sleep, but is now feeling a bit calmer until next week. L feels that this news has cast a dark shadow over a fun summer. We'll have to have some chats about what we've done and how they made us feel and bring back the happy feelings.

That's all my news for now 


Busy May

The weather has been glourious this month, almost wall to wall sunshine. Some say it will last all summer. We'll have to wait and see. ...