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