Libby's Last Day in St Louis

Today is our final day in St Louis, we haven't done that much as we did it all last year, but we did make to the shops and the Cheescake factory! We have had two sessions of physiotherapy that went really well and today we bumped into Mad Michael to the delight of Libby & Ben. It was strange being back in the therapy room this time not so anxious and feeling quite relaxed. I think this trip has given us all a boost, more exercises to do but nothing that we haven't tried already and Libby has moved on to another level - see the video. I can't believe what she has achieved in these last few days, purely down to her own determination, all we have to do now is improve her confidence and stamina and she's away - FANTASTIC, makes me feel very choked much to Libby's embarrassment!! We have met some lovely families and staff here at the Residence Inn and Libby & Ben have had a lovely time with all the children. We will look forward to meeting them, Dr Park & Mad Michael next year at the SDR party in March. I can't finish with the usual HUGE thank you to you all for getting us here and changing Libby's life forever. Lots of love Dave, Toni Libby & Ben xxxx P.S. I haven't mentioned Dave, so I thought I'd share this with you this will make you laugh..... Dave gets in the lift with 3 teenage girls all dressed in bikini's ready to go swimming and Dave says 'Oooh it must be my birthday' as the girls leave the lift he hears one of them stick her fingers in her mouth & pretend to throw up!!! He told me and said he was laughing on the outside but inside he was crying - how old did he feel? Letch!!!!!

Today with have been back to St Louis Children's hospital for our year post operation appointment. It felt like we'd never left, just didn't have the same nervous anticipation like last year - well we did a bit waiting to see what Dr Park thought!!
First of all we had a therapy assessment with Beth, same format as last year but this time to see the changes. There was lots of 'Libby couldn't do that last year' and in true Libby style she performed!! As I said in my last blog, Libby has been walking with one hand and one stick - well today Libby just walked with one stick and she didn't want me anywhere near her as I was embarrassing her!! Just shows what she is capable of when she puts her mind to it. The therapy assessment was really pleasing, lots of progress, lots of advice but all very positive. Libby does have quite bad rolling in feet when she is bare footed, unfortunately this will always be there and the future doesn't look bright for flip flops! However, it's not the end of the world it just means she will always need some kind of insert in her shoes to help - small price to pay in the scheme of things.
We then saw Dr Park, Libby said she was really nervous but again really showed what she is capable of. Dr Park was pleased with her progress, said the spasticity has completely gone and will never return. He made some good suggestions for strengthening her legs and stressed the importance of walking, walking, walking. As we knew, it's all about endurance with Libby.
The great news is that he thinks Libby should be able to get rid of her walking frame in six months (how wonderful will that be), he has suggested that we try using crutches as it will give her more support whilst she is still building her muscles in her legs and it'll also give her a better walking style. She is to carry on with the one stick aslo. Dr Park sees no reason why she won't be able to cope on crutches in secondary school - WOW!
I think it was a real boost for Libby today, she walked around the hospital so confidently with one stick, I think she's been having us on these last few months and is obviously capable of so much more! We then got back to the hotel room and she stood up and walked from the lounge to her bedroom, no sticks, no help - completely by herself - FANTASTIC, just what we have been waiting for - silly girl, now she know's I won't let up and she'll have to do it all the time!!
We have two more days of therapy and a whole future ahead of us - Thank you all. xxxx

As promised, here is a short video of Libby, 2 weeks away from being one year after her operation in America. It’s been a long, tiring, difficult, rewarding and amazing journey.

For those of you that see Libby (especially at school) walking around on her frame, you probably think – what’s different? She’s still using her frame, dragging her feet sometimes and still fairly weak. Well, I agree with all that but what you can’t see is her muscles and the lack of tightness now. I must admit, I wasn’t prepared for the total weakness that this operation was going to cause and that’s because I didn’t realise that Libby’s spasticity (tightness) was literally holding her up. This spasticity was taken away when Dr Park cut the nerves endings that were affecting her muscles and caused her to be very floppy.

What you see now when Libby is walking around is pure muscle built up over the last year through exercise. This is an amazing achievement for Libby, not only has she coped with the operation, she has had to endure a year of intensive physiotherapy that has got her where she is today. Along that journey, she has grown and when I’m feeling despondent, Libby’s very lovely physio Jill and my good friend Jane remind me that this is an achievement in itself to maintain what she has achieved through this growing period. We have been very lucky to have Jill (Bromley Borough Physiotherapist) & Judit (Hungarian Conductor) to help Libby to develop and achieve her goal to walk independently.

She can now stand and balance independently for up to around 3 minutes, prior to the operation she would be able to do around 10 seconds. She is walking really well when holding one hand and using one stick and I purposely ensure that I am on her weakest side to make her work extra hard! She can now sit, push up to stand, stand unaided and walk from that position by herself – she is still fairly wobbly but she is getting there. Also, very importantly because of this surgery Libby will now grow through puberty without extra growing pains (before the operation her muscles didn’t grow at the same rate as her bones and therefore, constant stretching was required to keep the muscle up with the bone).

Moving forward Libby will continue with physiotherapy hopefully as many times a week as we do now (big groan from Libby!). The more we put in, the more we will get out. However, we do get a few hormones kicking in so Libby’s attitude is sometimes not as easy going towards her therapy as it used to be – but I’ve always been one for a battle!!

I could go on forever but hopefully, this has given you some idea of what our last year has been about. We are extremely proud of Libby and we are lucky to have such a strong and determined Daughter. Ben has also been a star (tormenting and winding his sister up as much as possible!), it can’t be easy for him to see Libby getting lots of attention but he has coped really well.

We are seeing Dr Park on Monday 25th July and I will let you know what he thinks on our return.

There are now many many families from the UK travelling to St Louis for this operation, the waiting list is huge! Also, it has grabbed the interest of some surgeons over here in the UK and a hospital in Bristol performed their first operation only a few weeks ago.

We shouldn’t have to fight for what our children deserve but that’s life and all that leaves me to say once again is thank you all so much for helping us to make this happen, we are truly grateful.

Toni, Dave, LIBBY & Ben
xx