We are in our last week and it’s incredible to believe we have been in the USA just less than 2 months. Thinking back to day 1 seems such a long time ago and the time here has been something quite unique, I hope the blog and postings have given an insight to Dana’s journey.
We started the week’s physio with Mike, who is back after a weeks holiday, so makes for an interested physio session. I had given Mike an update on the weekend and how Dana had been practicing sitting on the swiss ball for balance and also focusing on stretching her back. Mike had a real treat for Dana after she boasted she had taken 3 independent steps at the hotel over the week end, so basically said ‘Great, I want you to walk for me’. To say Dana was shocked was an understatement, ‘you want me to walk’? Dana said. ‘Sure’ you told me you walked three steps’ . For those of you reading this blog who know Dana, she is a girl who visualizes herself doing things before actually mastering it properly, so in her mind the three steps converts to I can walk now. So I was thinking ok this is where it’s going to go horribly wrong and we are going to the ER. Dana stands and Mike is infront of her, she takes a step then hesitates, then take another and loses balance, gets into a panic, Mike calms and reassures her. Dana starts again takes a couple of steps and falls. ’Hollywood’ shouts Blaire, yes Hollywood is down and Mike scratches his head as he waits for Dana to get up. He’s got a long wait, I think to myself and eventually helps her up. So again Dana stands, Mike is in front, and off she goes, 15 independent steps on her own. She needs time to warm up. This is amazing progress. The quality was poor, as the knees and back again let her down. The balance is coming though and the confidence Dana is developing is way above my expectations. Better still she does 10 minutes on the treadmill at 1.0 & .09 non stop. She was dripping with sweat, bless her, this was a real workout and boy did Mike push her.
As a mum I know I let my fears and anxieties shadow and Monday proved how single minded Dana is and she can see herself achieving so much more. She doesn’t need any NLP techniques here. I know things back home will change as I have changed my mindset. I just have to encourage those around Dana to adopt the same approach. As things were in therapy in the UK pre SDR will not work now for Dana. The approach is too slow and the frequency not close enough. We as parents are Dana’s physio’s first and we have the tools to work with Dana. We will work with those around us and hope those around us will work with us. Only time will tell.
Tuesday’s physio with Erica was even better, 1.0 for 10 minutes with an incline for the last 30 seconds and hardly sweating. Dana also walked with her crutches as my goal is for Dana to walk into the plane with crutches. She did ok, again Dana takes a while to warm up and eventually gets a really nice rhythm going with stepping. We continue walking with crutches back at the hotel as part of her homework and go downstairs for dinner and a social evening with crutches. We sit with other families and chat but I feel distant, maybe I am just so tired. My body is tired and my mind is also. It’s always thinking and worrying, or planning when to do the physio homework. Right now I could do with a holiday or a spa for a night. That would be so nice. Bring myself back to now and listening to other families, we all have our worries but our minds are relaxed by celebrating a set of twins 4th birthday, which was so lovely. Such beautiful and well-mannered girls.
Wednesday I decide not to take the wheelchair to the hospital with us. It just felt right not to use it. Dana has school at 1pm and physio with Erica at 4pm. We make our way to the hotel lobby and wait for the shuttle bus. It’s pouring with rain and doesn’t stop all day. Dana has her rain mac on and needs to use the walker outside, so this will be good practice. I still take the crutches and feel so free not pushing the wheelchair. Dana and I chat as she walks along side me and it feels so right, so normal. We arrive at the hospital and John greets us and is pleased I have no wheelchair and gives his usual encouraging words. So does Diane who is the teacher in the school hospital, her face and words are so pleasing and encourages Dana to choose where she would like to sit. After an hour and a half of school, which is on the 8th floor, we head towards the cafeteria on the lower ground floor. Dana’s still going strong and walking proud. It’s time for physio and head to the 4th floor. How will Dana cope with an hour of intense physio after walking all day? Well only time will tell. Dana sits in reception after Doreen greets us both and has a well deserved rest. Erica collects us and we see Mike in the corridor. I say to Mike and Erica ‘ Look no wheelchair’ and gives us a high five. The first item on the agenda today is the treadmill and beating yesterdays time. Erica suggests walking for 11 minutes with an incline. Dana did the 11 minutes and with 5 minutes on a 0.4 incline. At one point she shouted ‘stop my muscles are tingling and feel itchy’ That’s normal Dana keep going. Next on the agenda was walking with crutches on her own, all 250 feet, now that’s a WOW. Lastly she wanted to ride the bike. I said that’s too easy and Erica put weights on the back of the bike. Now that’s a workout.
Dana did amazing today and the last few days, far exceeding what I expected. Her stamina has improved and today she walked where I walked and did far more activity than me. Her pace of walking is the same as mine, even quicker in some cases and the stepping is heel to toe. Today was a major breakthrough for me, allowing Dana the opportunity to walk and not putting my anxieties first. How do I know what Dana is able to achieve if I do not allow her the opportunity. Isn’t this what we are here for? What a feeling of freedom not to have the wheelchair. Finally Dana can develop and become the person she deserves to be.
Tomorrow Thursday Dana is 6 weeks post SDR and will have the final post video assessment. Really excited to see how much improvement has been made and develop a training programme for home.
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