St Louis Diary

30 June - The calm before the storm!

Aunty Elaine and Francesca snook out for a pre breakfast swim this morning which enabled me to finally start blogging. I also took some time to film Francesca's walking pre surgery, before we left for the hospital. That left heel is so high off the ground without her splints, it must be so uncomfortable for Franny, I'm looking forward to seeing it flat! Francesca had a physio therapy evaluation at 10.30am with Lori and they quickly bonded. The whole team here has a 'yes we can' attitude, it's so refreshing in comparison to the UK. Francesca was filmed performing a series of physical tasks and Lori also measured her range. As usual Franny really applied herself and worked so hard. When Lori asked her if she wanted to take a break, Francesca told her about the intensive physio at Footsteps where she works for three hours! It dawned on me whilst we were there that Francesca has never had this simple evaluation with an NHS physio, it seems absurd. We then went to 'imaging' where Francesca saw her spine and rib cage and her back was marked for surgery tomorrow. It had the potential for a very difficult session but the radiographer made it fun, 'welcome to the Francesca show' he said as her passed us our Disney x-ray coats.

Francesca's surgery will be at 11.30am tomorrow local time, 5.30pm UK time. Thank you to everyone for all the kind messages, phone calls, emails and texts. Francesca is surrounded by so much love and support and we know you are all with us in spirit. God is continuing to shine on us (it did hit 100F today!). Our room is also ablaze with Francesca's prayer candles tonight, as they are in all the churches and homes in the Northampton diocese. For those fthat didn't get a prayer candle here is our prayer for Francesca: Dear Jesus, Hold Francesca close in your hands, protect her, give her strength and courage. Bless her family and everyone around her. Guide the doctors so that they can do your will and bring Francesca home safely to us. Amen.

1st July - Surgery Day
A sleepless night and feeling physically sick this morning. The realisation that Dr Parks will be opening Franny's spine today fills me with absolute terror. We love our darling Francesca so much, she is an absolute joy and it seems so unfair that she's having to go through all this, having fought so many battles already. Just keep telling myself that we're actually the lucky ones, that we've been able to access this amazing opportunity and with SDR, we are giving Franny a brighter, more independent future in motion.

Francesca was anxious and tearful on arrival at the hospital. She was introduced to the theatre team and given a sedative and an amnesia drug and was very settled when the time came to leave her. We were given a private room and received hourly updates from the theatre. It was such a long day watching the clock, every minute seemed like an hour. We went up to the beautiful roof garden to pray for Franny and saw many, many sick children up there. A reminder that however bad things are, there is always someone else worse off than us.

Dr Park eventually called in to update us. The surgery had 'gone just great" he had severed 65% of Franny's nerve fibres. We were then reunited with Franny in recovery and transferred up to Intensive Care together.