Waking up this morning my mind quickly turns to the physio session later today with Blaire again. Clarity is what I need and to have a clear understanding of what the main concerns are and how to address them. Until then Dana’s goes through her usual routine and we go for breakfast, which this morning she says, wants to walk down in her walker. This is fine by me. She’s getting pretty quick now on the walker, ignoring the posture, and heads back to our room once we finish eating. After face-timing home, whereby get told, the boiler, the home PC and now the washing machine have all gone wrong, it’s time to go to Children’s as Dana has her second school lesson. I’m thinking it’s going to be an expensive week back home.
Again Dana walks downstairs in her walker and walks out of the hotel and gets in the shuttle bus, with some help. Once we arrive at Children’s she walks with her walker until we reach the lifts. She has done an incredible amount of walking and to make sure she doesn’t over do things before physio suggest she uses the wheelchair for a while. Reluctantly she agrees. The more she is able to do, the more she wants to do. Dana gets a personal sense of achievement, which is great and pushes herself even further. I keep looking at her knees and really wish she can straighten them. I will get ask again later; maybe there is something else I ought to be doing in order to help her.
Dana’s UK school has emailed over some worksheets for Dana to work on and it’s on Business Studies, which she is so excited about as it’s one of her new option subjects. I sit in the roof garden for the hour and start reading my book. I get distracted by a mum cuddling her baby, sitting on the rocking bench. The baby must be about 10 months old and has an IV in his arm with a splint. The mum is wearing a tee-shirt which reads ‘I have decided” I look at the words and smile, what do the words mean for this mum. The words for me are very clear and very appropriate at this time. I think to myself there are signs everywhere and we choose to take notice or not. Today I take notice of the tee-shirt.
After an hours lesson Dana leaves the room with a big smile and we head to therapy. As we come out of the lifts, Dana comes out of the wheelchair and uses her walker to walk into therapy. I place the leg wraps on her to encourage the knees to be kept apart when walking. She flies into therapy and reaches the physio area before Blaire. Blaire jokingly repeats ‘come on’ in her English accent which is so funny. Treadmill is first on the agenda and Dana is struggling with walking. She does walk for 16 mins and considering the amount of walking pre physio she had done already, it’s pretty good going. Dana has her usual groans that Blaire now has a nickname for her ‘Hollywood’ that gives you an idea of the kind of sessions Dana has. Her acting skills are superb.
Blaire and I have a good chat about my concerns and suggests assessing the cause of Dana’s knees pulling in. I talk through what Blaire is saying and understand the exercises which will focus on Dana’s needs specifically. The exercises aren’t new to me and have done them a hundred times before SDR, yet this time round it feels so different as it will have a direct impact on Dana’s future. Blaire has Dana kneeling with hands on the wall and attempts to extend each knee to the side, right then left side. Dana finds this incredibly hard, I find myself pushing with her. There is a lot of weakness and the left knee does not lift at all. Blaire talks through how to support Dana and where this exercise will target. It’s surprising though to find out this will affect from hip to upper body, targeting hips and lower body is something separate. The thought of Dana’s body having all the spasticity support her body all these years is so wrong. All the years of physio as parents thinking its helping your child yet physio is like the waves of the sea. You gentle do the exercises until the tide comes in and it’s back to square one. It’s awful to see Dana struggle and I know the tide will not come in, the exercises will become easier and she will become stronger. This is only short term in her whole life. Spasticity was for life and that in my eyes is far worse, it’s a crime.
Back at the hotel, Dana walks with her crutches and does well. After sitting for a while she stand up on her own and says look at me, then she takes two steps. The confidence is so mature and its so great to see. When she is complemented by the therapist for the good work, she replies ‘I know’ It so good to hear.
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