It’s just after 9pm in the US, which is just after 3am on Friday morning in the UK and I am reflecting on the day as I write the blog. It’s the first time I sit down and relax after putting Oliver and Dana to bed.
Last thing at night and first thing in the morning Dana has a routine that must be followed, a certain code of conduct. During this routine we follow the protocol of stretches, each repetitive, each as important as each other. There are no adaptations other than additional ones, which the physio’s may suggest for us to incorporate. This is part of Dana’s life now and a change that forms part of daily life. At night Dana also wears night splints and knee immobilizers on both legs that keeps her legs straight throughout the night. These have became her ‘friends’ as she calls them as she said they protect her orthopedic incisions. Last night she screams in pain saying her left immobilizer was digging into her ankle, so at 2am I take it off.
After an unsettled night for Dana and I, we manage to lie in until 8 before we start the morning with the mandatory stretches. I look at the strips still on her legs covering the incisions and desperately cover them with hot water in an attempt they will fall off. Dana will not allow me to take these off, and for someone who has gone through the ordeal of these last few weeks,, the removable of the strips is bigger than the ops. So the strips survive another shower, maybe tomorrow they will fall off themselves.
Physio is later in the afternoon and we arrive in reception of the physio department as usual and await Blaires arrival. I get Dana to stand on her walker and start walking to the therapy room as sitting in the wheelchair is not useful. As Dana starts walking we meets other families who have just finished physio and chat along the way. We also see Mike who is wearing a London Underground Tee-Shirt and we point out where our nearest tube station is. Blaire soon arrives and comments how well Dana looks and congratulates her in attempting to walk with her walker. She instructs Dana to head towards the same treadmill as she used yesterday. What will today bring and can Dana rise to the challenge?
Dana is already out of breath and Blaire sits her down while she gets a bike to start of the session. This is Dana’s warm up as she heads out of the 4th floor and goes to 2nd floor and loops round. Dana peddles the bike most of the way. This is such an improvement and really shows how much stronger her legs are becoming. We arrive back in the therapy room and Blaire does some additional stretching on Dana. Blaire raises concerns over her hips and we confirm the hip x-ray show no abnormalities. Dana’s hips are so very tight and need a lot of work. Please don’t give me something else to worry about, I’m sure it is tightness and with a lot of hard work this will became better. Blaire then gets Dana walking with crutches, we have left hers at the hotel and borrow some. Dana feels really unsure about these as she attempts to take steps. Blaire is supporting Dana quite heavily and talks through how she has to move which Dana follows closely. Dana is so red faced and exhausted, I know she has really pushed herself again 100% and has raised her achievements yet again. Blaire sets Dana some homework for later and demonstrates what she has to do. Side stepping ensuring her knee is turned out and also forward stepping. We head to the ice cream stand in the cafeteria for a well earned ice cream.
After arriving at the hotel Dana rests for a while and while dinner is cooking we start on the homework Blaire has set. We attempt side stepping on and off a step which proves too difficult and quickly replace the step with the yellow pages. Dana attempt 20 stepping on each leg with again a lot of support. We sit Dana on a chair and really focus on getting the knee out when she lifts the leg, this seems better and Dana completes another 20 on each side. We head towards the stairs and focus on forward stepping on and off the step. Dana starts shouting I can’t do this. She is tired yet I encourage her to continue. Nothing I say calms her down and she gets into a moody and stroppy attitude. That’s it, I am not continuing and place her back in the wheelchair and head back to the room. Again similar to yesterday it’s knowing when to stop, yet at the same time I felt so frustrated she didn’t just do it. That’s the thing, Dana can’t just do it and I know she feels frustrated her legs are not doing what she wants them to do. After half an hour of tears and a lot of shouting she can’t do anymore and wants to go home, Dana calms down once we acknowledge she is giving 100% and we know she is doing the best she can. Dana feels it is always about exercises or physio and we both repeat the importance of why we do the amount we do each day.
The key is balance and making it fun. Something I clearly still have to work on.
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