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...........................
