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

BUILDING UP!

Building up!

Hi guys, it’s Libby here, I haven’t talked to you in ages so I thought I should talk to you.
I’ve been a little bit tired these days as I’ve been doing loads of P.E. at school lately. My walking is getting a little bit better. I can now do dancing (YIPPEE!). I have been taking street dance lessons every Monday morning and as it so happens Ben is taking them too but he doesn’t like it! I am learning to jump, stand up from the floor and turn around while walking!
My legs have given me the opportunity to learn how to walk with 1 stick and 1 hand. My Mum is holding my bad hand, (Left) and I have the stick in my good hand (Right). And I am doing really well with that challenge!
And my feet are as flat as a pancake! They still roll a bit so I still need the support but they weren’t rolling so much as they were.
This year I am going on a school trip to Sayers Croft for 3 days. There are loads of challenges for me. (Such as Abseiling, Rafting, and a Stream Walk) and I go this Wednesday so I hope it all goes well!
On the 21st July 2011 I am going back to America to see Dr Park and won’t be coming back for 3 weeks. I am also having 4 days of therapy. I am also going to DisneyWorld too!

I am doing really well

Libby
X
P.S. Mom will send in a video shortly x

Happy New Year

It is now 5 months post op and time for another update. These last few months have been difficult but progress has been made and there has been a huge difference in Libby, especially in December. There have been times when you think, is there going to be any significant changes and it’s hard to imagine that one day she should be able to walk independently. Tiredness, illness (usual colds and bugs), cold weather, late nights!! - all add to Libby’s ability and sometimes she just can’t manage to make an effort.

However, December has been fab, on 10th December, Libby took 31 very good steps, completely on her own (I missed it as she was working with Jill her physiotherapist at the time and had Daddy been there he would have nodded off -in true Dave style and missed it too!!). This was a huge turning point and a real boost (I have attached a couple of videos for you). Libby has got better and better and is gaining courage and confidence. Her muscles are getting stronger and stronger and in time (but a long time yet) she will become more and more able. We forget little things that she was never able to do prior to the operation and can manage now with ease - Libby’s muscles would go into spasm when they got tired and they would shake uncontrollably, this doesn’t happen anymore. Libby can now get from sitting to standing unaided, she can move her toes up and down (small but significant to us) and much more.

We are continuing with as much therapy as we can get as this is the key to Libby’s success. We have been very fortunate to be able to pay for our Conductor Judit to continue to visit us at home and Jill our Borough therapist has been fantastic and very supportive, we have even got hydrotherapy. Also, the funds have enabled us to purchase any equipment that will benefit Libby and she now has parallel bars, steps and a walking ladder in her bedroom (she can’t move but the equipment is there!!). At some point we will be purchasing a treadmill and possibly a pedal exerciser (which could cost around £1000 as it needs to be heavy weight for Libby to be able to use). All this is possible thanks to you all.

I will sign off now and report again soon with hopefully more fantastic progress. Below are a few words from Libby. All that is left to say is as usual THANK YOU and we wish you all a wonderful New Year.

Love from Toni, Dave, Libby and Ben

Hi everyone, it’s Libby here, I just want to tell you a little bit about me now, a little bit about America, and just a little Thank You. I feel really glad that the operation is all done. I preferred the 2nd operation because I didn’t have to stay in the ward for 5 days. Before I say all about America and how I feel now, I just want to say a little Thank You to all of the people who supported me and thought of me. Thank you all for giving me the money, the operation was the BEST operation I’ve EVER HAD IN MY WHOLE LIFE! We had a little miracle, my LEFT ARM IS STRAIGHT! The operation was worth it, thank you all!

Now let’s go on about how I feel now, I feel happy, upset in a good way because I thought that my life wasn’t going to go this way until I heard that I was suitable for the operation. Now I feel that the walking is going to be a piece of cake! I also feel very lucky to have all the people who helped me. At least my mum isn’t nag, nag, nagging at me all the time telling me to put my feet flat because they are flat.

Now let’s go onto America, the hospital nurses and doctors were very nice to me, have any of you seen Alice in Wonderland? Well guess what! I had a drink of Pepsi with a little bit of medicine in it. On the cup it said in big letters: “DRINK ME”, just like in the story. It was yummy. But there was a boring bit, when I was able to get out of hospital; we had to go to the zoo 5 TIMES! America’s temperature over there was up to 115°! We will keep you all posted, with a lot of great news!

Lots of love Libby xxxxx

Great Progress

Hi All,

I thought it was about time I gave you another update, we have been home from America for 4 weeks and Libby is making brilliant progress. It is coming up 8 weeks since the Selective Dorsal Rhizotomy (SDR) operation and 6 weeks since her heel chords & hamstrings were lengthened. Some of you may be wondering why Libby is often in a wheelchair when she wasn’t prior to the operation, well this is because she is very weak. During the SDR surgery Dr Park cut 65% of Libby’s nerves in her spine, this removed all the spasticity (tightness) in her legs and also her left arm (which was an unexpected bonus), 9 days later she had her second operation. After these operations, Libby couldn’t weight bare at all, all the tightness in her legs that had enabled her to stand and walk in a style of her own had gone. What we have now are very ‘floppy’ legs, which is brilliant and so nice when we are doing stretches to feel no resistance and I don’t get in a hot sweat trying to loosen the muscles each morning. These new legs now have to learn to walk again and hopefully by building the correct muscles she will develop a much better and more normal style of walking.

The hard work for Libby is now, she has got to develop muscles that have never been used before; we are having therapy 4-5 times a week. Libby is coping really well and working very hard, it can’t be easy for her to be back at school full time and then coming home 4 out of 5 days a week to do physio for an hour. Jill (the Bromley Borough physiotherapist) was very interested to see how Libby had lost her core strength too and was very floppy in her upper body; this highlighted how much the spasticity had been holding her trunk up. However, one week later and Jill could see that Libby was getting stronger and working hard on her upper body control. Libby also sees Judit (Hungarian therapist) and she is also amazed at how Libby is progressing so quickly, they do most of the physio in Libby’s bedroom and it’s so lovely when all I can hear each week is lots of WOW’s!

For me, I would have thought it would be very difficult to see improvement in Libby when I am with her every day but it’s so wonderful that I can. I love watching her walking in her frame and seeing her step heel toe with each step instead of the old dragging the feet across the floor and making holes in her shoes within a couple of days! After her two operations her feet had basically collapsed and as she stood up, they completely rolled inwards, now I see her feet getting stronger and stronger and are in a much better position. She has long splints which she can come out of once she has full knee extension as she walks – she’s very nearly there and I think within a week or two we will be shoe shopping again and she’ll be able to progress to her short splints. She should remain in short splints for another 6-8 weeks, whilst we build her ankle strength and then she’ll be able to wear ‘NORMAL’ shoes (my dream, I do hope she likes shoe shopping!) with just a special inner sole.

As usual, Libby’s determination is getting her through, last week she made it her goal to walk up the hill into school, it took 3 tries and she did it – I was expecting her to reach that goal until half term at the end of October. We are lucky that she wants to be able to walk so much, she is putting everything she can into this, she is back horse riding, and swimming and she’ll be back skiing next weekend. She has managed about 10 steps by herself and is practising daily! Our goal is to leave the wheelchair at school or home by half term and be back full time on her frame, walking with one hand and taking as many steps by herself as she can.

As usual, all that leaves me to say is THANK YOU!

Toni
xx


P.S. If you followed the blog, you’ll understand when I say that since we have been back Dave hasn’t been to an Irish Bar – no need I suppose when we run a pub! However, he did fall asleep in the most inappropriate circumstance...........................

7 weeks post op

7 weeks post op

Posing!

The Hard Work Begins

Well we've been home now for 10 days and time for a quick update -

We arrived home safe and sound, the flight was long and boring and little sleep had by all but we were greeted with a welcoming at the Greyhound with our family and friends which was lovely and kept us going for the rest of the day until it was time to fall into bed.

No rest for Libby, Judit (her Hungarian Conductor/therapist) arrived on Monday to start the long road ahead of building the muscles that Libby has never used before. Judit's reaction to Libby's new legs was Wow, Wow, WOW and every now and again another WOW!! It was good to see Judit and I felt back in my comfort zone - knowing that Libby was getting the best start to this new beginning. Luckily for me Judit came 4 times last week - Libby was not so pleased! Although she fully understands why she needs to do all this therapy, it's still a bit tough on her and she's very tired - however, as always, she is trying her hardest and by the end of last week Judit had already seen an improvement. I have also seen a great improvement and we are now back to walking with one hand (not as well as pre-op) and I can see she is getting stronger and stronger each day.

Libby's scars are healing nicely, she is getting on well with her new splints and being an absolute star wearing her night splints to bed. I did get confirmation today that Libby is not supposed to be walking bare foot for 6-8 weeks post heel chord/hamstring surgery - I've now stopped saying to her 'Well, you'll just have to get used to it' when she's complain that her heels are hurting whilst walking bare foot to the bathroom -Whoops - I didn't know!

Last week we had a visit from Elle, Sheerena & Thomas (Elle is 13 and had the SDR surgery in May); it was lovely for Libby to talk to Elle and see how well she was doing and also for me to talk to Sheerena and compare experiences. There is also a great network of SDR families on Facebook and its great when you have any doubts or questions, there's always someone that can help.

Today we have seen 'Jolly' Jill, Libby's borough physiotherapist and again, it was great to hear Jill saying 'Wow' and advising which exercises will benefit which muscles and what Jill plans to do. The video clip is supposed to show Libby's progress since 10 days ago but Libby thought it was all about her posing!

All in all, it's great to be home and great to have all the support we could need right now. We know that SDR surgery was most definitely the right decision for Libby and she will fulfil her dream.

There is a very big thank you to David & Fiona for thinking of Libby and bringing this operation to our attention - without them we wouldn't have known that there was a chance out there for Libby.

Obviously, a massive thank you to all of you for your help and support over these last eight months and for making this happen.

xxxx