Today sees another 11am physio session with Blaire and I have asked the manager of the therapists to join Dana’s session this morning. My reasoning for this is to get a better understanding of where Dana should be by the time we leave. I’ve mentioned before as Dana is a lot older than the children currently here, I felt a more personalized therapy plan will help me develop a structure of achievable goals to work towards and also the therapists would be working in unity. Now we are almost at the end of the allotted 4 weeks of therapy, I wanted to have targets to work with and also know Dana is at the stage she should be.
During the session we discuss what I am looking for and quickly come to realize that the structured programme is not what is required and the therapist work on Dana and assess on a day by day basis. Although I feel uneasy about the approach, I do understand Dana’s body will alter and improve when it does and no amount of time can be allocated to this. Dana is much older than the other children here and her body has carried the spasticity for a lot more years than the other children. The improvements are, as we have seen much smaller and still rewarding. Yet I have a longing to see much much more, this will take months. I know I have to lower my expectation and focus on the smaller achievements not look out for the bigger ones and be disappointed. I got to remember Dana, who is working so incredibly hard, it hurts so much inside to see the grit and determination during therapy. She is not quite at 4 weeks post op yet; I just don’t want to let her down.
Mid way through the physio session Dana’s private UK physio, Kerry, via Skype, also joins us. What was interesting as I was introducing everyone and talking through what Dana has been through and what stage Dana is at currently, is just how far Dana has come. This in itself reaffirms for me Dana is progressing well and to not get worked up and focus on schedules and timelines. Not having schedules and timelines is very alien to me and I will have to adapt and look at this differently. After all Dana is changing her habits so I will do the same.
I hold my laptop like an amateur cameraman, adjusting the angle so Kerry has a good view of the therapy. Dana forces a smile now and again but mainly she is red faced and full of concentration. To have Kerry live at a US physio session is brilliant as very few UK physio will have experienced just a fraction of what the children go through and more importantly see the rehabilitation in action. Dana walks with her walker up and down the therapy room and walks forward and sideways on the treadmill for a few minutes. Her stamina is low, yet she achieves the best she can. We are all thrilled at Dana’s work today and as the session ends we say goodbye to Kerry and hopes to join us again at a future session. Blaire sets Dana homework for later and we say goodbye until tomorrow.
Having a car makes daily life here normal and sometimes you forget that home is actually the UK. For me the UK is not part of my mind and for Dana she is starting to miss home. When you grocery shop and cook nearly every night and it feels you are working all week, it certainly not a holiday. I am sure people will ask me if I had a nice holiday when I return to the UK. I will choose my words carefully when replying!! The experience is one I have never come across, yet there are parts that are similar to being in Budapest with Dana for months of therapy. Being alone and sharing that journey with other parents in the same situation as you. Going to the same building at a certain time daily. Grocery shopping and cooking.
We drive to outside St Louis as family life still continues, Ollie needs school shoes as he is back to school next Wednesday. My aim is also to buy Dana some school shoes. I enter a shop and start chatting with the shop assistant when a customer asks if I am from the UK. She is also English and has been living in the US for 6 years. We have a chat and when I ask her what part of the UK she is from, she replies Epsom, which is 20mins or so from where I live. She says she misses the UK desperately and wants to go back. We carry on chatting for a while and say goodbye. Everywhere you go people are so friendly and chatty.
We buy Ollie some school shoes, Dana however proves to be more difficult due to the splints. We decide for the few weeks she has left wearing the long splints she will wear her trainers and we will buy shoes for her ankle splints. Joy another shoe shopping trip.
Arriving back at the hotel early evening and after a short rest, I start on the homework with Dana. This involves 10 sets of 20 reps of sit to stand, weight transferring and side leg raises. At bed time it is the usual leg stretches, but that’s later and now it’s time for dinner.
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