Friday July 8th - We are getting into a bit of a routine now sleep, physio, sleep!Franny still not weight bearing but working so hard, more clips here

Saturday July 9th - Wicked!
Franny had a really bad night, very uncomfortable and distressed, we finally got off to sleep at 2am and slept until lunchtime. No physio today and I decided it was defintely time for a treat so we went to see Wicked the musical which Francesca really enjoyed. In the evening we shared a BBQ with all the other english families who are at various stages of their SDR journey. We welcomed Elodie (3) and Callum (6) and said goodbye to Holly (4) who is leaving tomorrow. I will really miss Holly's parents Jo and Rome who have been so lovely to me but I am happy that they are through the other side and Holly is making great progress. The children spent another night shooting hoops in the basketball court 'Team SDR' is growing! Franny is still very weak through her legs and not weight bearing yet. This is extremely frustrating for Franny and we've had lots of tears today, she has never spent so long in her wheelchair. I keep reassuring her that with lots of hard work on her part the muscles in her legs will develop and she will return to her pre-op strength eventually. It must be very frightening for Franny and I am grateful that she is a very strong communicator(!) and is sharing her worries with me.

Sunday July 10th/Monday 11th July - Franny is fed up!
It's been a really difficult couple of days, lots of tears and cuddles and Franny not up for any filming I'm afraid. Franny's legs are like jelly and she is unable to weight bare yet. This is so frustrating and frightening for her. In her eyes she has taken two steps forward and ten steps back. For those parents considering SDR, children like Franny who are particularly stiff pre-op are always the weakest after surgery and take the longest to recover. Be prepared for this! We concentrated on basic core stretches in physio today and Michael reassured Franny that in time she will get stronger. It's frustrating all round but having waited eight years for this opportunity we can wait a bit longer!

Tuesday July 12th/Wednesday July 13th - Slowly re-adjusting!
It's been an extremely challenging few days. I am sitting here tonight asking if I prepared Franny properly for this massive transitional change in her life. I did my best but I think she is still in shock. She has woken up with a new pair of legs and as she puts it "Father Christmas has forgotton to leave me the batteries Mum". To all the parents preparing older children for SDR surgery please be ready for this very difficult inbetween stage. We're on the road to mental, physical, emotional recovery now but it's a long journey and can take up to one year.

We met with Dr Dobbs today who is perfoming Franny's heel cord and hamstring surgery on 20th July. She is having bilateral hamstrings and perc. heelcord lengthening on the left leg only and will be admitted overnight. It was a very positive consultation. Dr Dobbs will bring Franny's left heel flat to the floor for the first time ever in her life. With ongoing physio we'll be able to build up the left leg and it will eventually be as strong as the right. Franny will achieve normal balance which will give her movement and endurance I never thought possible.

Just wanted to say a huge THANK YOU to everyone following our progress. Every day we are showered with such lovely, heartfelt messages of support and today we have reached over 17,000 visitors to this site, that's an army! Franny knows how much you're all rooting for her and it does motivate and encourage her. Thank You, we appreciate every message.

Franny wanted you all to see her favourite place at the hospital, the rooftop garden

Carline x