St Louis Diary

Francesca's surgery is booked for 1st July. Check back here for regular updates on her progress.

27 June - Finally Here!
After 18 hours travelling we arrived at our hotel to a wonderful wecome by some of the other english families. Ethan (3), Daniel (7), Holly (5), Toby (5) are all post op and undergoing daily physio and Jordan (13) is having surgery the day after Francesca on 2nd July. Francesca was absolutely exhausted but managed to stay awake for a couple of hours to share a BBQ with them all. We listened to their surgery experiences, everyone was very open and honest and the children proudly compared their surgery scars! There was a wonderful connection between everyone, a real camaraderie and I was again reassured. Francesca absorbed all the information but didn't talk about it as I put her to bed, I guess she was still processing. We got to bed about 9pm local time. Exhausted but exhilarated to be finally here and on the road to greater independence.

28 June - The Arch, The Mississippi and St Louis Children's Hospital!
We were up early and shared breakfast with everyone. Francesca was keen to get explore so we went to see The Arch, with Holly and her family who are from Daventry. The Arch is the tallest national monument in the USA and the city's best known attraction. We took a tram up to the top and at 630 feet we got a great view. We saw the Mississippi river which is flooded at the moment and Francesca thought it was particularly brown and muddy. At lunchtime we took the Metro to the hospital for our first appointment. It was great to see the hospital and finally meet James Lee, SDR co-ordinator and main point of contact and Joan Puglisi who is head of physiotherapy. Joan examined Francesca and answered all of our questions and at 3pm we met with Dr Park, Francesca was very impressed that he was wearing Prada shoes! Dr Park was very positive and reassuring and reiterated that Francesca will benefit significantly from SDR. Her overall balance and strength will improve and it will have a profound positive impact on her life. Without the surgery she will deteriorate. He remarked that Francesca is particularly tight in her left leg and will need further hamstring and heel cord surgery to enable a heel strike (flat foot). Francesca will have this extra procedure after the SDR and it will involve another overnight stay in hospital. Although this was new news it's something I had considered after speaking to some of the other families and I have 100% confidence in Dr Park.

29 June - Aunty Elaine has arrived!
A free day and Francesca chose to shop! She has some new D&G shades which she even wore inside! Aunty Elaine arrived this evening, it was so great to see her, there were hugs all round and lots of tears! Francesca showed her around the hotel and made all the introductions. After dinner, Francesca enjoyed shooting some hoops with the other children and their siblings. She was really impressed with Jordan (13) who has been playing for some time and an impromptu coaching session began. Jordan gave Francesca some great tips and Francesca went to bed the happiest I've seen her in a long time. Every day I am reassured that we are doing the right thing for Francesca. I'm praying that I can stay calm and be present for her. I keep thinking that if I were the one with CP and making these very difficult decisions for myself then I would definitely be chosing SDR.