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

Goodbye St Louis

Today was our last day at St Louis Children’s Hospital and we had our final therapy session with ‘Mad’ Michael, there were a few measurements to take to see how Libby’s range had improved, I could see she has a much better range than before and her legs and feet are so floppy now, so floppy that we need to build up strength. The good news is that all the stiffness has gone and we can now concentrate on developing her new way of walking – the measurements baffle me and I never fully understand what they mean!

The session continued with a wobbly go on her sticks (although we had managed a bit of one-handed walking this morning at the apartment which was good as we were able to do a lot of that before SDR), then another lap of the therapy room on her frame, 1.41 secs this time, followed by her quickest walk yet on the treadmill. Then a bit of fun with the zoom ball – ‘Mad’ Michael wet it first so they got soaked as they played and then finally a go on the bike, Ben was allowed too so we had a stressful time wandering around the hospital trying to control him and Libby nagging to leave her alone!

It was time to say goodbye and I felt quite emotional, Libby & Michael hugged and she said she was going to miss him, Ben jumped all over him in only a way Ben can and I just about controlled my tears until I walked away! It’s hard to leave the little safety net that we have been in, where every question is answered, every problem is dealt with and everyone is so nice & friendly. However, it will be great to get back to our family and friends and I know that our little SDR network will be there on Facebook and also I know that if I have any questions or concern an email or a phone call to St. Louis will be received and dealt with as promptly and professionally as always. A fantastic experience and journey we have had here in St. Louis.

We finished the day beside the pool which reopened today, so Libby and Ben were happy and Libby was delighted that she climbed two steps and stood up. But we run out of time and missed the BBQ with the other SDR families which was a great shame.

We are heading of home tomorrow so the blog will slow down quite considerably. I will blog from time to time when Libby reaches another milestone. Thank you to everyone who has been following and keeping us company whilst we have been here – it has consumed my evenings!

All that is left to say is, THANK YOU to everyone for making this happen for Libby, it has and will change her life and we are forever grateful.

Lots of love
Toni (And of course Dave – who would have done the blog himself (yeah right), if he could work a computer!!).

Wobbly Sticks

Another Good Day

Another good day today, Libby slept well in her night splints and we don’t appear to have any rubbing or sores on her day or night splints, so very pleased with that. Libby managed to get off the loo and stand up without any support this morning (so she likes to tell everyone) and she couldn’t wait to show Michael in therapy – but we left out the loo!!

We had a good therapy session, Libby needs to adjust to the extra weight her legs are carrying and also the huge shoes so there was a little bit of dragging feet here and there and also she was really swinging her left leg out when walking. This got better and better during the session and I’m sure once she is used to the shoes and splints, she’ll be fine – at least I’ll have something to nag about, I can now say ‘don’t swing’ instead of ‘flat feet’ !! Libby also did another circuit of the therapy room, this time in 2 mins instead of 4 mins 48 secs as she did yesterday – sheer determination!

Ben happily went to sibling club because Yasmin’s (having her operation today) brother was going to be there. When we picked him up he had made Libby a lovely chain made out of flowers and said ‘I wasted all my time doing that’!!!

We finished off the day visiting the Delmar Boulevard (The Loop), not much to see really and we stopped off for a Ben & Jerry’s Ice Cream – not the best idea to give the children chocolate ice cream in 97° heat, it was melting before they could get it in their mouths and what a mess, Libby had already spilt coke on her white trousers before therapy, along with the Ice cream, the trousers went straight in the bin when we got back!!

One more day to go, we have our last therapy and discharge from the hospital at 11am and then we are hoping the pool will finally be open for a last swim tomorrow and then finish in the evening at the Residence Inn with the other SDR families for a BBQ.

Super Trying

The Arrival of Splints!

Today was another step forward!! Libby did her stretches with me this morning and didn’t complain of any pain. We set off for therapy and the splints had arrived, yipeeeee!! Although I was really pleased it also meant not a lot of therapy would get done today but that’s life. Whilst Michael was making the necessary adjustments to the splints, Libby did her best walking in her frame yet (see the previous video posting), she had lovely straight knees, her heels were coming down before her toes and she managed a whole circuit of the therapy room without a break which was a first and it took her 4 mins & 48 secs – she was determined to do it (her long socks were in preparation for her splints!). I was very proud of her and had a lump in my throat as I could see she was tired but wouldn’t give up and also her knees and feet were brilliant. – I can’t wait to see how she gets on with her splints.

We left therapy and headed off to the shoe shop, I was very excited thinking of all the choices she would have, however, when we got there, there was only one option - Oh well, she will get a choice eventually! The purchase was very quick and painless, Libby came out in these huge size 3.5 trainers that cost $65 and she was delighted. We then headed to the shoe outlet store where I purchased her an identical pair of trainers (in a different colour) for $9.21!!!!

Libby had a bit of a moment today and she broke down in tears as she was missing Daddy, shortly after I received a text from Daddy saying he was looking forward to us coming home as he needed someone to control him! - I think the rest of the text was lost – the bit where he said he was missing us too!! Ben jumped on the band wagon too and was missing his Daddy but they then got distracted trying to stop Uncle Karl ‘popping’ into another shop!

We set off for the cinema, Uncle Karl treated us and we watched Cats & Dogs in 3D which we all enjoyed. All in all a good day and feeling positive and delighted with how her legs are looking, feeling and working.

Libby couldn't wait to go to be in her night splints - I couldnt think of anything more uncomfortable, but so far she's not complaining!

I’m hoping the last two days of therapy will be really good.

Great Walking

One step forward, two steps back....

It feels like one step forward and two steps back – today Libby was in pain every time her heels touched the floor! We went to therapy and she managed to do 6 minutes on the treadmill and some side stepping before it was too much for her to bear - until she could ride the bike! Lori (the therapist) thinks it could be bruising where she is not used to having her heels touching the floor (she has always been on tip-toes), so she is going to email Dr Dobbs who performed the heel & hamstring operation to double check. Also she is in desperate need of some ankle support as she is now walking in a totally different way and she is very weak at the ankles, these supports we know as splints and should have arrived by now, but just our luck, ours have gone walkabout! Lori again was brilliant and has hopefully located them at another hospital and she has offered to collect them before she goes to work tomorrow so that they are there for Libby's therapy session at 1pm – I hope she remembers! We are very keen for these to arrive as Libby hasn’t worn splints before and we would really like them fitted and tried whilst we are here in St Louis – we are also desperate to go shoe shopping for Libby, for once we are going to have a choice and it’s so exciting!!

The afternoon was lovely, we met with Karen, Matt, Yasmin & Sebastian (Yasmin is nearly 11 and having her SDR surgery on Thursday), the girls chatted away, Ben & Sebastian played in the games room with Matt supervising and Karen and I chatted with plenty to talk about, the wonderful St. Louis Children’s Hospital, our children, the NHS............ say no more!! – Uncle Karl had escaped for some ‘children free’ time and to regain his sanity!

It was time to go much to the children’s disappointment and we left with Sebastian explaining to Ben how to blow bubbles with bubblegum – Sebastian, you’ll be pleased to know that both Libby & Ben spent the next 4 hours practising and both succeeded, so Thank You!! I tried to get a picture of them both but Ben blew too hard and his gum zoomed across the room and embedded into the carpet! Thanks for a lovely afternoon and good luck Yasmin for Thursday, we will be thinking of you and will hopefully see you before we leave for England on Saturday.

Oh,and I nearly forgot, we had a video MSN with Daddy, he could hear and see us but we could only see him. You'll be pleased to know that I was still nagging when he typed the question 'what are you doing tomorrow?' and as I was waffling away my long drawn out reply, I noticed that he wasn't actually listening to me, I could see his eyes were kind of above the webcam level and he was watching the telly - MEN!!!

Good News

Today was our final appointment with Dr Park and he was very pleased with Libby’s progress. Libby had a few questions ready for him - how much longer her itching was going to last, could she bend her legs whilst sleeping now, could she dangle her feet!!! But the biggest question of all that she asked was ‘has all the spasticity gone?’, when Dr Park replied that it certainly had, Libby had the biggest smile ever (Uncle Karl needed the tissues again!!). Dr Park explained that he had cut about 65% of her nerves in her spine and that the spasticity had all gone and it was very very unlikely that it’ll come back – we will know that for sure in approx 4-6 months. He also said that Libby now had full knee extension which was very good and means that she will be able to stand up straight and take proper long strides putting her heel down first (when she gains her strength back), rather than toe first, dragging along the ground making lovely holes in her shoes – which the tightness in her muscles caused her to do. He was very impressed that she had got over the two surgeries and was pain free so quickly. He said Libby will be walking much better within a month and we are to send him a video in about six month’s time.

We are obviously delighted with the result and are looking forward to what is to come in the future. However, please don’t expect Libby to be walking by herself on our return, she is still very weak, she is not yet back to her ability on her walker, she’s not walking one handed at the moment and more– we have a very long road ahead. However, now everything that was stopping Libby from walking independently has been taken away by this amazingly fantastic surgeon and his team and with hard work and determination; she will fulfil her dream (and ours). Feeling quite emotional at the moment and very hopeful - what a wonderful journey!

To top the day, we were having our evening meal and I was trying to get Ben to use a knife and fork and to cut his food himself, which he did (little star) and then Libby tried it - she has never been able to hold a knife and fork and always just uses a fork in her right hand but.... because the surgery has got rid of the spasticity, this included her left arm which was also very stiff (not as bad as her legs). Today she put her fork in her left hand, STABBED her chicken, picked up her knife in her right hand cut it and then put the chicken into her mouth with her left hand – A FIRST – WONDERFUL, she may not have to go on Ladette to Lady after all!!!

In the pictures above is Dr Park & is wonderful assistant Nicole. Also Libby’s very nicely healed scar on her back. I have put a video on prior to this post to help out my technophobic hubby!!

Back to therapy

Libby's bike riding today with 'Mad' Michael

Libby worked well at her exercises with me this morning, she is obviously getting stronger by the day but she still has a long way to go. MSN with Nanny Sophie this morning and then a surprise MSN with Nanny & Grandad Lee – thank you Linda for letting them use your computer – Dave had even managed to tidy up in case anyone went into our place – so he tells me!!

Again no therapy today as it's Sunday, it makes the time drag a little and it's hard to fill the day, especially when we decide to start the day with a morning around the swimming pool, only to find it's been closed for safety reasons - we had two very disappointed children and lots of tears! So, we went to the Butterfly House which we had planned to do in the afternoon, it was very nice, although Libby was a bit freaked out with all the butterflies flying around her, Ben however, was absolutely delighted to stick his head in a bubble amongst the cockroaches! Uncle Karl had gone all 'Geeky' with his camera and was delighted with his picture of the dragon flies enjoying themselves???!! - one even managed to smile at him!!

We headed off back via a shopping centre for lunch and for Uncle Karl to get more T-shirts, surprisingly without too much protest from Libby & Ben. We came back to the apartment and then went for a walk via some more shops; according to Libby & Ben – looking for ‘Ice Cream’ - they didn’t question it, even in the shoe shop!! We popped into Pet Smart again because I spotted a couple of dogs, oh how I wished we hadn’t, there were dozens of rescue cats & dogs all sitting in cages looking longingly at us and the shop assistant homed in on Libby and presented her with ‘Chrissie’ the kitten with ‘Cerebral Palsy’, how we wanted to take her home. Anyway, we pulled ourselves away, got home and went for something to eat.

Another day gone, looking forward to therapy every day next week and then coming home next Saturday/Sunday and seeing all our family and friends.

Tracey, I’ll tell you about the shoes when I see you!!!

Karen, you must have had a few, Dave assures me they were busty blondes!!