Libby's Progress

Libby's Last Day in St Louis

2011-07-27T23:06:00.004+01:00

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!!!!!

2011-07-25T23:28:00.003+01:00

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

2011-07-09T14:18:00.001+01:00

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!

2011-06-19T20:23:00.001+01:00

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

2010-12-31T17:22:00.011Z

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

2010-09-19T21:30:00.003+01:00

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

2010-09-19T20:24:00.002+01:00

7 weeks post op

2010-09-19T19:56:00.002+01:00

Posing!

2010-09-01T07:33:00.002+01:00

The Hard Work Begins

2010-08-31T22:33:00.002+01:00

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

2010-08-21T02:40:00.004+01:00

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

2010-08-21T01:55:00.002+01:00

Another Good Day

2010-08-20T02:45:00.004+01:00

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

2010-08-20T02:15:00.002+01:00

The Arrival of Splints!

2010-08-19T04:18:00.005+01:00

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

2010-08-19T03:36:00.002+01:00

One step forward, two steps back....

2010-08-18T02:33:00.006+01:00

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

2010-08-17T04:06:00.004+01:00

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

2010-08-17T03:52:00.002+01:00

Libby's bike riding today with 'Mad' Michael

2010-08-16T02:58:00.004+01:00

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!!

Shop Shop Shop

2010-08-15T02:40:00.004+01:00

We woke this morning, no therapy today at the hospital as it's the weekend, but we did our stretches and Libby walked to the bathroom on her frame, her quad muscles were aching from yesterdays therapy, but apart from that all was good. Her incision on her back has heeled really nicely and looks very neat. Her leg incisions still look a bit raw but they also look like they are healing nicely.

After a call from Nanny Lee, MSN with Nanny Sophie and MSN with Daddy (who told me he was being good???), we set off for a shopping day. Libby & Ben had promised to be good and after yesterday, Ben really had to make some effort. Surprisingly we had a very pleasant day shopping, they both behaved extremely well and we even managed to go to another shopping centre on our way back - with the bribe of a Ben & Jerry's ice cream! We came home with a few bags, Libby got herself an outfit for $6.51 in a sale, Ben got himself some Zhu Zhu pets and room (just what we need to bring home, the hospital had already given us enough of the stuff, now I've got to pack it!). Uncle Karl got some bits that he wanted and I got some jeans (good job Dave doesn't do our banking) and shoes - Mum, you would have loved this shoe shop, I could have spent hours in there. Anyway Dave - I didn't get much!!!!!

In the evening, Uncle Karl treated us to a meal at the Cheesecake factory, which finished off the day nicely and as you can see Libby & Ben thoroughly enjoyed themselves.

Go Libby

2010-08-14T02:19:00.003+01:00

This morning was great, Libby let me do her stretches with no pain or itchy feet, her plasters were coming off and leaving angry looking sore wounds but all dry and as they should be. We spoke to Nanny on MSN and Daddy too. I was a bit concerned (and I hope you are all looking after him at The Greyhound) but he mentioned that he’d been to the gym four mornings out of five – the only work out I’ve known Dave to do is working out where the bar is!! We then headed off down to the pool and how lovely to see Libby enjoying herself with Ben, something she loves doing and completely independently. It was quite a treat for Karl & me as we could sit and watch in the boiling sunshine. It finished off very nicely with Libby & Ben insisting that Uncle Karl got in the pool - which he did begrudgingly, only to jump out and lose his swimming shorts, giving the rest of the pool (full of yummy mummies) a full view of white bootie – as they say in the USA!!!! Therapy this afternoon was brilliant, Libby worked so hard, she did 2 minutes on the treadmill then rested, followed by another 3 minutes and rested again. She then set off on her walking frame and managed a whole circuit, which is 180 feet with only to rest stops. Her feet were great (a slight roll on her left foot, but that will be sorted when her splints arrive and she gets the support for her weak ankles). She continued with a workout on her quad muscles, you could see she was tired but didn’t give in – Uncle Karl was choked again just watching her sheer determination (which Libby thought was hilarious and asked him if he needed a tissue!!). We left therapy and went to the Science museum, which to be honest was rather dull and with Ben not being able to behave himself it was quite stressful! We had tea out and Ben managed to gain a point and half an hour on club penguin, only to lose it again when he refused to come off it when told. He is now in bed sobbing because he has been so naughty!!!

2010-08-13T13:31:00.002+01:00

Itchy Feet

2010-08-13T05:11:00.000+01:00

Libby woke this morning and her feet were no longer swollen, she also said her ankle no longer hurt. We still gave her Nurofen and iced it but she let me do her stretches without complaining. We had a lovely call from Nanny Lee who had just returned from a few days in the ‘rainy’ Cotswolds. We didn’t have therapy until 2pm so we set off for the Zoo (for the third time and still haven’t seen it all) for a couple of hours. After sweating buckets we came home for a shower, lunch and a catch up with Nanny Sophie on MSN – picture and no sound again but we managed!!

Therapy went well, Libby tried the treadmill again but didn’t really get on with it, she did better walking in her frame, however, today we were pain free but the itching had returned – if it’s not one thing it’s another! Michael was very good and adapted the session to suit Libby’s comfort level and she did very well on the total gym and also her sit to stands. Dr Dobbs arrived and was pleased with Libby, we discussed the strain and how it had improved and also the itching, the conclusion was to put her back on the medication as it is quite severe! I asked Michael today if Libby was at the stage that was expected after the two surgeries and he said that although we are not doing the exercises planned at this stage, she is doing very well and as soon as she is able, he has no doubt that she will be able to do all that is expected, hopefully tomorrow we will be back on track for a full therapy session. The good news is Dr Dobbs said Libby can now swim, she is delighted and Ben actually cuddled her with delight. That should make life a little easier, although it’s lovely here, it’s incredibly hot and there’s not a huge amount of things to do.

We finished the afternoon at the cinema watching Toy Story 3 followed by a very nice meal, with well behaved children and Uncle Karl chilled!

The Strain

2010-08-12T01:55:00.000+01:00

Today was fairly quiet, Libby still had swollen feet and a very sore right ankle but her rash and spots were gone. Libby & I popped to the shops this morning so Uncle Karl could take Ben for a sneaky swim - which he thoroughly enjoyed.

Therapy was with ‘Mad Michael’ and today wasn’t our best day, it was obvious that Libby was in a lot of pain and after a short go on the treadmill, Michael took a look at her feet and decided that she has probably strained her right ankle – GREAT! Ben took over the therapy session and continued with the treadmill – may as well get our monies worth!! After resting the ankle and putting ice on it, Libby was still finding it painful so Michael sent us to see Nicole & Dr Park - once again, they were more than happy to see us (find that quite amazing as we’d have to book an appointment in the UK). Dr Park thought that it was nothing too serious and hopefully Nurofen and ice will sort it out. We are seeing Dr Dobbs (who performed the Heel & Hamstrings operation last Thursday) tomorrow, so we can double check that it’s nothing to serious – just frustrating as we can’t get on with physio.

The afternoon we popped to the West County Shopping Mall and Uncle Karl did some shopping and we (Daddy & I) bought Libby a Camera as we had promised. Ben will also get a treat when we can find something that he wants! Uncle Karl got some bargain jeans at $31 (About £20 but would have cost £90 in the UK), I got Libby & Ben some sweets $21 (£14) – I was mugged; I should have bought them a jean leg each!

Fingers crossed, Libby’s ankle feels a lot better tomorrow.

Uncle Karl Needs Beer!

2010-08-11T03:04:00.000+01:00

This morning we had a phone call from Auntie Jane, we called Nanny Lee, spoke to Nanny Sophie on MSN and had a call from Daddy – what a lovely start to the day & all before 9am! Daddy had just finished his lunchtime shift, when I asked him how many pints he’d had, he replied – None??? However, I’m far to clever for that, so I asked him how many bottles he’d had – that was a different answer – as if I’m stupid!!!

Today Libby’s rash was much better, her feet were still quite swollen and she was reluctant to weight bear for me but as we had physio, I didn’t feel the need to push her. Physio was with Beth and once again Libby worked very hard, you could see she was in pain and she needed to rest quite a lot in between exercises but I could see she was capable of a lot more than I think she is!! Again, we left there feeling very positive, although it’s still hard to imagine that we will get the results that Dr Parks has said we will – I don’t doubt him for one moment but to allow myself to think that she could walk by herself is something I will believe when I see.

Ben couldn’t get into the Sibling playroom today as it was full and boy did he need it, he did manage to help Libby in her therapy but he found it very hard to ‘behave’ today and even the threat that he wouldn’t get a star didn’t manage to stop him – Uncle Karl was driven to beer!

We took Uncle Karl to see the St Louis Arch in the afternoon but the weather was unbearable, they say an index of 115°.

For all you SDR Dad’s that visited ‘Hooters’ - Ben & Uncle Karl had a nice time too!!

For all you that want to see OB Clarks – the photo is above – I personally can’t see what the attraction was!!

Dave sent me a text later today, bragging how he’d got some Brownie points as he’d remembered to record ‘Mistresses’ for me – I reminded him how lost them already as he’d been ‘economical’ with the truth earlier, to which he replied ‘imaginative’! - Happy 14^th Engagement Dave and thanks for the pressie! xx

Therapy - WOW

2010-08-10T03:01:00.000+01:00

Today Libby was back to therapy, I wasn’t expecting much as she still wouldn’t weight bear at breakfast, her feet were still slightly swollen and she had an itchy rash up her neck, so it wasn’t the best start to the day. Anyway, off we went to see ‘Mad Michael’ for our session – I was AMAZED, Libby stood for him, she was kicking a ball, she did ‘High kneeling’ – unsupported, she walked (with help) on her knees and even managed to walk with her Kaye walker (which she was unable to do after the SDR operation), it wasn’t easy for her but she put so much effort into all of it and kept reminding Michael how long she had left of her session! Uncle Karl had come with us and he got very choked when he saw how hard she worked, it was truly amazing and put me right back on track and totally positive and excited again – Yipeeee!! Michael offered to go and speak to someone regarding Libby’s rash and we went with him, what service, there we were standing in a corridor with Nicole (DR Park’s assistant), Joan (Head of therapy), James (Hospital Coordinator) and then along came Dr Park – wonder what that consultation will cost!!! They decided that we could try an antihistamine but also to stop the medication that Libby was taking for excessive itchy feet.

We had lunch at the hospital (as the food is very good) and then went off to the Botanical Gardens – what a beautiful place. Libby & Ben were really good and we managed to keep them cool by going under the water sprinklers, Karl and I just looked like we’d been under the water sprinklers, the sweat was pouring of us - it was so humid!

We finished off the day with tea at Applebee’s which was quite funny –Ben sat next to Uncle Karl (who’s not very used to children) and how I laughed every time Ben wriggled and turned towards Uncle Karl’s pristine white T-shirt with his tomato ketchup hands and Uncle Karl moved further & further away, but Ben just got closer & closer!!

The biggest laugh came as we drove home, there we saw a MacDonald’s within walking distance of our apartment – Dave waited two weeks for a Big Mac and only got one at Chicago airport on the way home!!!!

A Day Off

2010-08-09T03:07:00.000+01:00

Libby woke this morning still spotty on her face and an itchy rash on her neck (very much like a heat rash) which I will get checked out tomorrow at therapy. Her legs weren’t as swollen but not back to normal and again she found it hard and painful to try and weight bear.

As we had no therapy today we decided to drive out and visit the Meramec Caves (the secret hideout of Jessie James). The tour was fantastic and Libby & Ben thoroughly enjoyed themselves and the sights were spectacular (the photo’s do not do it justice); we then had a short boat trip on the Meramec River before heading home.

It was so hot, we were all feeling uncomfortable but Libby was especially. When we got back we took the padding off her legs, leaving just the butterfly stitches and she had a lovely shower which made her look and feel a whole lot better.

We finished off the day with a meal at the Cheesecake Factory (very nice again) followed by a huge piece of Cheesecake for Libby – the only one that could fit some in!!

I’m looking forward to getting back to therapy tomorrow, I think it’ll be good for Libby to be encouraged by the professionals and hopefully gain some confidence to try and weight bear and also for me to be reassured that everything is as it should be and quite normal.

It was strange without Dave & Mum today but Uncle Karl stepped up to the mark and took on the role of tea and toast in the morning! Dave called us and even managed to log into msn so we could see him although not hear him – not quite the idea to pay to talk on the phone and watch him on msn, when msn is free to talk & see!! Anyway, he filled us in on his journey home which sounded quite hilarious, however, his version was slightly different to the version Mum sent me on email, and this is what Mum said:-

Now the story as we have got off the plane in Chicago and are walking to find where we have to go Dave sees the MacDonald's and wants one (just like a kid) I suggested we got our bearings first of which we did, he then goes off & 10mins later he comes back I asked if he got his MacDonald's he said no but he had bought a lager which he was shocked to find it had cost him 9 dollars (so he started with 20 dollars) before that he wanted chewing gum which he got (he did ask if I wanted anything so I had a small packet of crisps) so by now he has not got enough money for his Big Mac and he can't find his credit card or driving licence. He thought he had them with him but then he said perhaps he had left them in his shorts pockets which were packed. Still wanting this Big Mac he goes off again comes back with Big Mac I asked did he have enough money but he had change £5 up to get it. You will be please to know I'm very calm through all of this- not one comment. We board the plane for Heathrow Dave settles down takes his shoe's off and 3 hours into the flight he nudges me and points down to his shoes” look inside my shoe” he said and low and behold in his shoe is his Driving licence and credit card -how can you walk around all that time and not feel something in your shoe!! When I asked him how they got there he said he had put then in there when he had to empty his pockets out on going through the security scanner.

Dave’s version to me was that he couldn’t find his credit card but had managed to get a Big Mac but couldn’t afford a beer and hadn’t had one the whole journey home – Yeah Right, conveniently forgets again – I wonder how many beers he managed back at the Greyhound today – do tell!!!

Bye Daddy & Nanny

2010-08-08T03:56:00.000+01:00

This morning, Libby still wouldn’t weight bear but her feet were no longer swollen. We have no therapy this weekend and to be honest, I think it would be too painful for her. It’s very hard as it feels like we have gone 10 steps backwards but speaking to other SDR families that have had both operations, this is very normal.

We had a quick shop at the Galleria (Ben broke his flip-flops!) and then we had our last lunch at Maggianos with Dave & Mum before I then took them to the airport. We said our goodbyes and felt very sad, neither of them wanted to leave - a couple of tissues later and off I drove back to the apartment.

We decided to spend a couple of hours at the Zoo and had a really nice afternoon, I was dragged into my favourite house- the Reptile House – YUK, it was gross, a huge Boa Constrictor eating a rabbit and snakes galore – the things you do for your children!! We left and Uncle Karl treated them to a Burger King on the way home.

Libby’s feet were swollen again so we elevated them and covered them with some ice. She wasn’t in pain or uncomfortable, in fact she managed some very good weight bearing and also a couple of steps from her wheelchair to the sofa. A small achievement but it felt like progress.

Dave sent me a text to say they had arrived at Chicago and he and Mum were still talking – it was only a one hour flight! I then got another text saying he’d just had a ‘Big-Mac’ and his ‘holiday’ was complete!! I didn’t point out that he still had another 8 hours to go and I would imagine that Mum would have to seriously bite her tongue!!!! Anyway they have now boarded and are on their way back to Heathrow. Feels very strange without them but it’s nice to have Uncle Karl for company.

Uncle Karl Arrives

2010-08-07T05:18:00.000+01:00

Today was the day before Daddy & Nanny go home, Daddy was all bright and breezy as we were so late back from shopping last night that he couldn’t be bothered to go to the Irish bar!

We decided to go to the St. Louis Arch & the Mississippi today. Libby was on good form, apart from an ‘ouch’ on every single movement that she made (as and when she remembered!), she was relatively pain free!! She still has a rash (although, no-one seems particularly bothered by it) and I wonder if it’s all the drugs she has had coming out? She also has a slightly swollen left foot which we will keep an eye on. It is obviously very painful for her to stand on her feet and it feels like we are back to square one, she is a dead weight trying to get her around but I am assured this is the norm.

We got to the Arch, which was spectacular and decided to go up it, however, you cannot take a wheelchair. Libby’s little face fell and the tears were about to fall until Daddy offered to carry her and she promised not to ‘ouch’ at every move. It wasn’t the easiest of trips and if you don’t like heights going up 630 feet in a claustrophobia pod, isn’t much fun - Daddy did really well and it wasn’t easy but Libby got to see St. Louis from a high. We then went on to the boat trip on the Mississippi, another 60 odd steps to get Libby down and then onto the boat and of course we want to be upstairs, outside on the top deck! Daddy earn’t some brownie points – finally!! A good day had by all, Ben and Libby spent some of their money on ‘junk’ in the souvenir shop (God, don’t you just hate the rubbish they insist on buying!), Ben was the photographer for the day and Libby said ‘Diva’s don’t smile’!!

We headed home and Daddy set off to buy the BBQ food for tonight and I went to pick Uncle Karl up from the airport, Sat Nav is great but when I was asked to ‘Circle’ the pick-up point, I politely headed off and ended up back on the motorway!! Anyway, that killed some time and by the time I got back to the airport and sussed out the circling Uncle Karl had arrived. I took him back to the apartment to meet a very excited Libby & Ben and then gave him 45 mins to shower and change before we headed off to meet all the other SDR families at the Residence Inn.

We had a lovely evening with all the other families, Dave thought he was gaining some more brownie points by cooking our food (and sinking a few more beers), whilst Libby & Ben had a smashing time with all the other children. It’s so lovely for Libby to spend time with other children going through the same as she is and also for Ben to let off some steam with the other brothers & sisters. A very successful night and we came home around 9pm and put the children straight to bed.

My third child, however, had other ideas, Uncle Karl hadn’t been to the ‘wonderful’ Irish Bar and how could he possibly go to bed on his first night here, jet lagged and desperately in need of sleep, without paying a visit – so off they went. Oh, how Dave knows how to lose his brownie points - OHHHH Dave, Disappointed again !!!!!!!

Dave & Mum leave tomorrow – what am I going to talk about!!

Second Surgery

2010-08-06T04:25:00.000+01:00

Well you’ll be pleased to know that my husband took me out last night – to the Irish Bar!! I thought I had caught his attention and he was looking lovingly into my eyes but then I realised there were 13 TV screens around the bar and he was actually watching baseball - Oh how it took me back to the days when we first started going out and I was in competition with a fruit machine that wasn’t even being played!!!

Libby went down for her second surgery ‘Humming’!! She didn’t need any clowns - I think she did enough ‘Clowning’ around for everyone!! It’s so nice that she wasn’t worried (or if she was she certainly didn’t show it), very brave. She’s disappointed as she won’t be able to swim whilst we are here and as the temperature is well in the 90’s, it’s a shame but we didn’t come here to swim! When she came round from surgery she said ‘I’m just going to sleep, so that I can go home today’! Dr Dobbs called and said the surgery went really well and he was very pleased, he has lengthened her hamstrings and heel chords on both legs successfully. Libby has four small pads/plasters on her legs and she was up and walked to the toilet (with a lot of help) within 4 hours of surgery!! It is recommended that she walks as much as she can bear, quite amazing really - when Libby had her heel chords lengthened in the UK back in 2007 she was in casts for 6 weeks. Sophie popped by to see us, she had her heel chords lengthened early this morning, and she too was doing really well. Hopefully we will be joining Sophie and the other SDR families for a BBQ tomorrow night.

Ben had a nice day with Nanny and got another sneaky swim in – bless him and well done Nanny for braving the pool! We have asked that he doesn’t mention it to Libby as it’s not fair but also it’s not fair if he can’t have some fun too, so we are trying to do it discreetly.

I sent Dave off to the Budweiser factory (just so that I can give him more grief on the blog!!) as how could he go home and not have visited the world’s biggest Brewery!! However, when I sent him a text to say we could leave hospital his reply was ‘great, you get a taxi, I’ll drink heavily and you can then drive me home’, my response was ‘of course’ – Yeah right!! Libby did really well and we were able to go home. FANTASTIC, Nanny & I got to shop (and did Nanny shop – Macy’s was waiting to close!!), Daddy babysat and he was a bit surprised when I sent him a text to say the shops were open until 10pm and we were in no hurry! The Irish bar’s profits were down tonight!

Post Op Day 8

2010-08-05T01:49:00.000+01:00

Well Dave had a good night out with the other Dad’s, suffering today and you can imagine the sympathy he got from me & Mum - NOT!!! Anyone would think he was on holiday, didn’t call me to make sure I got home safely from dropping him off!

Libby had a bit of a rash on her face this morning so I emailed Nicole (Dr Park’s assistant) for some advice, within 10 minutes I had a reply and she said she’d pop and see us in therapy this afternoon (I’d read the side effects of the medication Libby is on for her itching and panicked!). Ben has decided that he will do Libby’s stretches and has made a plan, which he put into action this morning, when he lifted her leg so high our hearts were in our mouths – Bless him!

We went off to Ted Drewes for a frozen custard/Ice cream and then onto the Science Museum before we had to be at the hospital for therapy. Libby & Ben enjoyed themselves and Libby was definitely herself, she began moaning of a sore back and then mentioned ‘popcorn’ in the next sentence – nothing wrong with her at all except she wanted to eat!

Libby was good today and tried really hard with her exercises; Nicole popped in and wasn’t concerned about her rash so we are just going to keep an eye on her. Joan came to see how we got on with Dr Dobbs and was surprised when I said it was at 3.30pm, James arrived and told us our appointment was actually at 7.30am this morning and surgery is tomorrow – News to us! Anyway, we saw Dr Dobbs and he is going to lengthen her inner hamstrings and heel chords on both legs tomorrow – poor Libby, all she could think about is not being able to swim! So we are in hospital tomorrow at 9.15 for the operation.

Fiona – not got any Steve Madden shoes yet but I did get sunglasses, not enough time for me & Mum to browse leisurely!

Lollyhome – now know who you are – thanks for all your comments Lorraine, glad you liked the scooter!

Post Op Day 7

2010-08-04T03:34:00.000+01:00

Another good day today, Libby seemed completely back to herself, we even managed a couple of hours shopping this morning and boy can she shop! Dave took Ben for a sneaky swim (as Libby can’t for another week), so he was happy too.

We had therapy this afternoon and Libby did a bit of walking (with help) and went on the treadmill, she managed 2 minutes and 1 second (so she tells me) and which point she suffered severely itchy feet, something to do with the sensory nerves healing - this can be quite common in older children. The physio paged Nicole (Dr Park’s assistant) and she arrived and prescribed some medication which we picked up within the hour –amazing service.

We moved to our new apartment which is huge and lovely, shame my pub accommodation isn’t like this! We then took Dave to meet the other SDR dad’s for their night out at the Baseball – another night out for Dave!!!! Mum & I took Libby & Ben for a nice meal at TGI Friday’s and now they are all tucked up in bed - Libby with one knee immobilizer on as she couldn’t tolerate two – Bless her, can’t be very comfortable.

Tomorrow with have physio and see Dr Dobbs who’ll decide if she will be having ham strings and heel chords lengthened.

Post Op Day 6

2010-08-03T03:28:00.000+01:00

Libby had a great night’s sleep, she managed to turn herself and only woke Nanny once – wish I could say the same for Ben, he didn’t want to sleep on the blow up bed so he went in our double, I went on the blow up and Dave was going to sleep with Ben. Dave attempted it (on his return from the Irish Bar!) to get kicked immediately so he decided to go on the sofa bed and I then got in the double with Ben – what a mistake, he can turn 360 degrees in a second, kicks his legs, elbows are everywhere, at one stage I had both his legs across my neck!! Tomorrow we are moving to a 3 bed apartment so all sleeping issues will be resolved!

A very successful morning at the Zoo, Libby was brilliant a bit more like her old self (moaning and niggling with Ben), they thoroughly enjoyed themselves and as you can see Dave & Ben had some bonding time!

We got back to the apartment about 2pm and Libby promptly fell asleep (maybe we did too much). Therapy at 5pm was good, Libby was still tired but tried as hard as ever, in fact too hard on the bench doing leg presses, and she felt dizzy & sick! I took her to the rest room and said to her that I thought she was trying too hard and she replied ‘yes, but I so want this to work’!

Dave & Ben bonding!

Once she had taken a break she got her second wind and went riding around the hospital on the bike – which she loved.

Dave & Ben Bond!

Thank you to everyone that has helped us on this journey, we wouldn’t be here without you and Libby would not be getting this fantastic opportunity, we can already see the difference and benefits and she’s barely weight bearing yet. It’s going to be 3-4 weeks before she is back to the strength that she was before we came to St. Louis.

Again, thank you all for keep us going with your lovely message, it really helps. ‘Lollyhomes’ – who are you? We are receiving such lovely messages don’t know who you are – Thank You!!

Discharge Day

2010-08-01T22:58:00.000+01:00

Today Libby has been discharged, we had therapy first thing and once again she worked really hard, lots of bike riding around the beautiful garden. Ben came to therapy and took loads of photos and did some very dodgy videoing as well as acting as ball boy during her basketball session! That whacked her out and she has been quite tired and emotional today – although won’t give up and rest! If she would only take a quick nap (Daddy never seems to have a problem!), I know I’m probably worrying too much but I can see she really needs to recharge her batteries and she still has really droopy eyes (bit like me on a Friday night!).

You’ll be pleased to know Dave managed to watch the Arsenal game at his new found Irish bar but we made him pay and Mum & I grabbed an hour round the pool, Dave then thought we owed him and escaped to do the shopping!

We are off to the Cheesecake Factory for tea and then hopefully a good night’s sleep followed by a lie in! All being well we are going to attempt the Zoo tomorrow as therapy is not until 5pm.

Post Op Day 4

2010-07-31T23:31:00.000+01:00

Well physio this afternoon wasn’t so great, Libby was so exhausted that she was completely out of it again, she managed to stay awake and still tried, Clay was impressed with what she had managed on her first day, she even rode the bike. As she regains her strength she’ll get better & better!

Libby & Ben had a delivery of cookies (very expensive cookies I might add) were they interested – NO!! Maybe Nanny & I will eat them tonight, don’t suppose they’ll notice!

We had a video call with Grandad & Aunty Terry and Nanny Lee and Chloe telephoned so Libby was very happy. She was also talking to Miss Booker and Auntie Lisa on Face book and MSN; it’s so nice to be able to be in touch with everyone, the time flies when we are glued to the computer!! Thank you all for your lovely messages they are really keeping us going.

Dave’s had a nice day round the pool, he didn’t manage to stay too long as he couldn’t keep his stomach in when the dolly birds sat themselves next to him – he’s now going to rejoin the gym (yawn yawn) when he gets back!

Nanny, Ben & I are off home now, Daddy staying tonight and we are being discharged in the morning.

OMG

2010-07-31T17:07:00.001+01:00

OMG what a therapy session this morning! Libby couldn’t stand up this morning and transferring her to her wheelchair was really hard as she was barely weight baring and heavily relying on me, she was given her pain control medication half an hour before therapy. We met Clay and Tracy on the 4^th floor and they started taking Libby through her stretches, she was in fits of giggles and spaced out again (not as bad as yesterday) but my god did she work hard, I don’t know why I expected anything else of Libby as she always works hard at her exercises but seeing as she was so weak and in pain I just wasn’t expecting what I saw. What a STAR, Clay said he didn’t see a whole lot of patients on the first full day of therapy doing as well as Libby!! He had her doing loads and ended on help walking (supported) to us – you should have seen her grinning face, she was so pleased and excited with the way her feet and legs were working, it reduced me to tears (not hard these days) – Clay said it was an AWESOME first session! I can’t wait for this afternoon’s session, WOW WOW WOW!!!

Post Op - Day 3

2010-07-31T02:54:00.000+01:00

Well, ‘Mad Michael’ came and Libby had been given her pain relief about 30 minutes before his arrival, she complained about being transferred into the wheelchair and you could see she was holding back the tears. We went off to the physio room on floor 4 where Michael showed Libby how to help getting to the sitting position and in and out of the chair, the medication had kicked in and she was so spaced out, she didn’t have a clue what was going on. He then moved on to show us how to do the new stretches at which point Libby was out for the count! We carried on regardless and it was wonderful to feel her legs and feet; they were all floppy and there was no stiffness at all, instead of breaking out into a sweat as I normally did, trying to get her leg as stretched as I could, I can now do gentle movements with these lovely legs that are not resisting me. It will take the next 3-4 weeks to get Libby back to the strength that she was prior to the operation but with all the therapy we now have available to us and Libby’s determination, I feel really excited about her future.

It was supposed to be Nanny’s turn to stay the night but after seeing the way Libby needs to be lifted into her chair and toilet etc... It was decided that I was the best person to stay. I popped back to the apartment with Nanny & Ben for a rest and some tea but Ben then decided to pull on the heart strings and cried and cried begging me to stay with him - talk about feeling guilty! I was trying to explain that I realised that he wanted me to stay and as much as I wanted to stay with him, Libby needed me to, how do you explain that to a seven year old and not make them feel that you’re favouring one? Anyway, he settled down and I promised to ring when I got to hospital – I did and was he bothered – NO!

And Dave gets another night out at the Irish Bar.........................

Post Op Day 2 - 3

2010-07-30T16:52:00.000+01:00

Libby had a good day yesterday and got better and better throughout the day; she was sick in the morning but settled down and then managed to eat some jello (jelly to us) which she kept down. She began to be more like herself and was joking about. We had a visit from Callum (he had his SDR op the previous Tuesday and his ham strings this Tuesday), he gave Libby a get well balloon and she was really pleased to see him. Libby showed us how loose her left arm is and it’s quite amazing, considering we were only expecting her legs to change after the operation, it’s fantastic to see this arm that she can now put straight up in the air without any stiffness – AMAZING! Daddy stayed the night -poor Libby having to listen to his snoring and lucky me for another good night’s sleep!!

This morning we arrived and Daddy didn’t get much sleep, Libby wanted to be ‘rolled’ every 10 minutes for comfort (or just to keep him busy knowing Libby)! We have been shown how to get Libby out of bed, it’s very scary as we are so frightened not to hurt or damage her. It was my turn to lift her out of bed and she was obviously in lots of pain, Nanny nearly passed out just watching and I just about controlled my tears! She was very weak and was nodding like a dog! We managed a half an hour trip to the garden on the 8^th floor which is absolutely beautiful and then we popped down to the sibling playroom to say hello to Ben – as we left I heard him proudly saying ‘that’s my sister, she just having her physio’! Every day, Ben has bought her a present or a card; he fed her some ice cream this morning and even kissed her! As we came back to the room, we bumped into 3 year old Gracie who also had the operation the same day as Libby; she too was nodding like a dog! I got Libby back into bed and she’s now comfortable again.

We have our next physio this afternoon at 2pm with ‘Mad Michael’; hopefully Libby will be more comfortable this time. It’s all exactly as we have been told, so although it’s tough seeing Libby in pain, we know it’s all for the right reasons and things will now start improving by the hour.

BAD HAIR DAY!!!

Second Night

2010-07-29T13:34:00.001+01:00

I had to post this, of all the dogs to come & see Libby; she got a Bernese – made my day even though she was to out of it to really care! Libby wanted me to stay last night as she said Daddy had stayed the night before, I didn’t protest but did point out that I was also there (just left out the fact that I was having a fantastic sleep in the family room!). Mum & Ben left swiftly so that they didn’t have to endure Dave’s driving, I think he was a little offended until I pointed out that I wouldn’t get in the car with him either!! Dave went off quite happily and then continued to text me throughout the evening to tell me about a brilliant Irish bar that he’d found – nothing changes!

Not a great night’s sleep, amongst other things, one of the monitors kept going off saying she wasn’t breathing! – although this is a fantastic hospital it baffled me that the nurses had no link from the nurse’s station to the monitors and as they kept shutting our door they couldn’t hear a thing and didn’t know so I had to keep getting up and telling them – it only went on for 4 hours, every five or 1o minutes!!! Libby’s nurse for today has just arrived and said if we need anything just press the call button – why wasn’t I told that last night?!?!

Today Libby’s temperature is back to normal and she should be taken off her drips and monitors and hopefully she’ll be awake for a lot more today and things will get better. Libby has just opened a few more cards and presents and I had to get Dave to read the beautiful prayer from her class 4PW as I was too choked – thank you! It hasn’t been too bad and as Libby is not a complainer we have been fairly lucky – she’s amazing.

Post Op - Day 1

2010-07-28T22:53:00.001+01:00

A fairly quiet day today, Libby has been kept sedated for most of the day, she was sick a few times and now has a bit of a temperature but we have been moved from ICU and they are now reducing her medication. She hasn’t complained at all about being in pain and when she is awake she is in good spirits, this morning she said ‘Good Moring Good Legs’ and if anyone asks her how’s she is feeling they get the ‘thumbs up’ from her! She hasn’t much energy but was able to open a few cards and pressies – she didn’t forget she had them!! I’ve kept some back for tomorrow as she should be far more alert. Ben came in to see her today and gave her a new purple teddy (just what we needed!) and a lovely drawing that he did last night, he was very pleased to see her and immediately asked if he could use the computer and go on Club Penguin, when he couldn’t get connected he went to the Sibling Playroom! He’s been a really good boy, it must be very difficult for him to see her like that and also she is getting a lot of attention, he’s been a star and obviously cares very much – but it’s not cool to show it !! Libby was fast asleep when Faith the dog came to see her but hopefully she’ll be coming back tonight so Libby can have a cuddle.

First Night

2010-07-28T12:49:00.001+01:00

Well we are now into the next day, Libby has been OK, she was sick twice in the night but coped quite well (she absolutely hates being sick) although the 12 teddies that she insisted on bringing didn’t! She was talking to us and co-operating with the nurses, she even remembered to say ‘please’ when asked if she’s like an ice chip (ice cube to us) with her medicine – bless her! About 8pm last night she asked in a slurred voice if she could open her cards and presents and said she was ‘up to it’, she then promptly fell back to sleep!

Dave & I were going to take it in shifts to sit with Libby and around 10pm last night I went and got him from the family room (with sofa beds & blankets) and we swapped – I then slept for 6 hours (not much sharing from me!!) – Dave popped in to see me a couple of times and said he would have taken a photo and put it on the blog, if he knew how – result for me!! Now he thinks he has got loads of brownie points but also realises he will lose them in a flash!

This morning she is talking well, wants to sit up (which she can’t) and is dictating messages to me to type on her MSN, between nodding off. She is thinking of her tummy and keeps asking for food so getting back to her old self! She is also asking to be rolled, which is good as some children don’t want to be moved and they need to be rolled every few hours. The doctor has been in and Libby gave him the thumbs up when he asked her how she was feeling! We have seen the incision on her back and it’s very neat.

We are so proud of our brave little girl; she’s just getting on with it and not complaining, even managed a smile this morning. I was just telling her how upset Ben got when he left the hospital last night (he didn’t cry in front of her but sobbed when he left the room) and she said ‘so he does care’!! He went home and Nanny said didn’t stop colouring and making get well cards! I bet when he comes to see her today, he’ll say hello and then ask to go to the sibling playroom!!

PICU

2010-07-27T23:37:00.001+01:00

Well, Libby is now in PICU, where she will remain for the next 24 hours to be monitored. The elation we felt when Dr Park told us the operation was successful soon disappeared when we actually saw Libby in recovery, she looked so awful. Although it’s to be expected, it’s tough when you actually see them looking so helpless and being in pain, it makes you feel guilty because we put her through this and you just want to take the pain away. However, it’ll all be worth it in the end, the hospital is fantastic and she is receiving the best care, she is quite heavily sedated and sleeping peacefully at the moment. It’ll be a long night but hopefully she’ll feel a bit better in the morning. Poor Ben was very upset when he saw her and really cried when he left with Nanny to go back to the apartment. We had been warned by the other SDR parents that the first 48 hours are rough so we are as prepared as we can be. I haven’t attached a photo this time as Libby doesn’t look great and thought it a bit unfair, hopefully we can post a nice smiley tomorrow! Again, thank you all so much for your lovely messages. xxx

Surgery is over....

2010-07-27T20:55:00.000+01:00

Dr Park has just been to see us, Libby’s surgery has gone really well and the SPASTICITY has GONE!!!!!! Libby is in recovery and we are waiting to see her. In the meantime, I thought you’d like to see Dave in recovery!!

The Day has come.....

2010-07-27T19:01:00.000+01:00

All up early this morning although we didn’t need to be at hospital until 10a.m. We were all feeling quite calm, even Libby, she was a little nervous last night but not too bad at all today, quite amazing really considering what she is going through. We arrived at the hospital and received superb care; everyone was friendly, helpful and couldn’t be more accommodating. Various people were in and out of the room and everything was explained to Libby to ensure she was as calm and relaxed as possible, every time someone left the room Libby would say ‘they were nice’! Libby choose bubblegum flavoured gas to put her to sleep and just before she was due to go, they gave her a medicine to help relax her, after 15 minutes this should have kicked in – I was expecting Libby to become quite drowsy and not really be aware of what was going on but instead she kept laughing and lifting her head on the pillow and slurring at us – it was very funny!

The time came to say goodbye and we had to leave her before she was put to sleep (I’ve always been there when she’s been given the gas) but she was in good hands. Obviously Nanny & I were in floods and Dave was pretending to be all macho - but I saw him! We are now sitting in a family room awaiting news, we have had the first call to say she has gone to sleep and they have made the incision. Next call is in about an hour.

Ben went off to the sibling’s playroom which is supervised and he is now making some American friends he had some lunch with us but has now gone back for a long time (he said)!

Can’t believe we are finally here and it’s actually happening.

I’ll post again after surgery is finished. Thank you all for your support and lovely messages, it’s really nice to know you are thinking of us and especially for Libby.

Toni

Libby meets Dr Park

2010-07-26T20:50:00.000+01:00

Yesterday we got familiar with our surroundings; we went for breakfast at the Cheesecake Factory and didn’t need to eat again for the rest of the day! Dave was very disappointed that alcohol was not served at 10a.m.! We then took a drive to the hospital to make sure we knew where we were going; however, the Sat Nav and I didn’t really get on nor did me a great big car and huge roads and we were none the wiser this morning! Libby and Ben had a nice swim in the afternoon and then early evening we took a taxi to see the other SDR families staying at the Residence Inn. Can you imagine Dave’s face when we arrived only to be told the bar doesn’t open on a Sunday – HOW FUNNY!!!! Anyway, we had a lovely evening and it was really nice for Libby to meet the other children who had had the operation and those that were going to have it.

Today we have been at the hospital and have finally met all the people that we had been emailing for so long. How efficient they all were, everyone was really friendly and kind, we were not kept waiting, in fact we were slotted in for an X-ray at 11.15 a.m. so that we didn’t have to wait till 1pm, it really puts us to shame how our NHS works. The day ran very smoothly and we met Dr Park, who told Libby that she would walk independently at home and school and for long distances she’d need a stick. It will also help her left arm, which was an unexpected pleasant surprise. Obviously, we are over the moon that we have finally been told face to face that this operation will really benefit Libby.

Only tomorrow to get through now, before all the hard work starts for Libby to reap the benefits of this surgery. We are scheduled to be in hospital at 10 am tomorrow and surgery will be 12.30 pm....Poor Libby ‘she says’!!

2010-07-25T02:47:00.003+01:00

Well, we have finally arrived in St. Louis, flight was great until we got to Chicago and they cancelled our connecting flight, then put me, Libby & Ben on a flight and Dave & Mum on another! Anyway, eventually after a few tears it worked out and we got here. Apartment is great and Libby & Ben have fell into bed, they have both been so good today and we are all exhausted.We have a free day tomorrow to get our barings and then to hospital on Monday to meet everyone ready for Tuesday. Toni xx

2010-07-20T07:12:00.001+01:00

This gives us hope and encouragement - A comment from Callum's Dad - Callum had the SDR operation last Tuesday, he is 7 ....
...
to all those parents that are on the sdr page and waiting for your childs operation i would like to share what callum told me in hospital last night. Daddy this is the best thing that could ever happen to me in my life.dont know how ...i kept the tears from flowing but if this isnt enough insparation for u all i dont know... what is. Anyway good luck to all those familys who are waiting or whose done this journey already good luck to all your children they are all so special xx

2010-07-14T21:52:00.001+01:00

And it works!! 10 days to go now, we are all excited, Libby especially. We have been in touch with other families out there and it's all so positive. Little Callum (7yrs) had his op yesterday and I'm speaking on Facebook to his Mum every day. We will see them when we get there.Libby had her sports day today and insisted on doing the 'Long Distance' I was worried she may damage her legs just before we go but all safe and sound!!

St Louis here we come

2010-07-04T16:43:00.001+01:00

20 days to go, Libby is very excited and I am getting nervous, it seems unreal that this is actually going to happen. It has really helped following everybody else who has been, are there or going.

Will post again soon, just testing really that this is going to work!
Toni x