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!!

Shop Shop Shop

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

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!!!

Itchy Feet

 

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

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!

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

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

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

 

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.