The alarm goes off at 6am, we have to be at the hospital for 9am for our first appointment and then later that morning we finally meet Dr Park. Feelings of nervousness come over me as well as thoughts on what he will say to Dana and us. Am I making the right decision, is this the right procedure for Dana. Of course it is as the alternative is not an option. We get ourselves together and after breakfast make our way to the shuttle bus which will take us to the hospital. There is another family on the bus whos son is 2 weeks post op and going for his daily physio appointment who try to reassurance us, but to be honest doesn't make me feel better.
Within a few minutes we see the first sight of the hospital and park outside the entrance. As we walk into the lobby we are greeted with the friendliest security guard I have ever met. Not only did he say good morning, he gave us information on where to go and made us feel at ease. He also greeted each person with a good morning and a time check when entering the building. We made our way to the cafeteria as we had a hour before our first appointment and just sat taking in the environment and the scale of the building. It is so colourful and feels more like a hotel with a fish tank and floating objects on a mechanical devise above your head - and this was just in the cafeteria.
It was time to make our way to our first appointment and registered at reception. We took a seat and waited to be called. By this time we were joined by another new family. When we were called we were shown into a room to watch a video on SDR, then we were shown to another room and had a consultation with the lead co-ordinator/physio for SDR. We spoke about Dana and the procedure and asked our questions which we prepared and given clear answers. Deanna then took measurements of Dana's legs and we continued talking about Dana and how she would be after the op. This appointment with Deanna was so in-depth and also time was spent at getting an understanding of Dana and reassuring us. This is multidisciplinary team working.
We then were shown to another room this our finally appointment with the man himself. We sat on the sofa and in front of us was a chair waiting for Dr Park. My palms were hot and sweaty and felt as if we were waiting forever - of course it was only a few minutes. Dr Park came into the room with two other doctors. We sat listening to Dr Park reading Dana's notes and answered questions as they were asked. He queried what type of CP Dana has and proceeded to ask Dana to open and close her hands quickly and do a pincer grip. From two actions Dr Park confirmed Dana has Diplegia. Why oh why have we two different type of CP from the NHS. We sat with Dr Park for 45mins and felt for the first time a weight being lifted. Someone is able to help my girl walk, something I always knew she could do. We have never been given hope or encouragement in the last 13 years, always re-active, never pro-active. Dr Park went through the operation and post op. All our questions were answered and he went through a time line of progress. He even showed us Dana's MRI scan and explained where the damage was and when it happened. At Birth.
Dana will walk independently at home and with one stick outside. She will not need to wear splints long term and all spasticity will be removed. The rehab programme will be initially physio based with moving towards a personal training gym programme. It will take Dana 2 years to achieve max potential. To say we are happy is an understatement. It will be hard work and Dana has signed a contract and made a commitment. Dr Park has also said she must work 110% all the time which Dana agreed too.
I feel so let down after all these years and feel sad when I look at the younger children going through the same procedure. How different Dana's life would have been if she had this done years ago. The NHS are letting children with CP down in not giving parents options for treatments and also talking to parents fully about what spasticity is and how this affects children. We thought when we started this process we knew about spasticity - compared to what we know now, we were in the dark and feel have let Dana down.
Not only will Dana walk but she will move much more freely and quickly. Her body will feel so much better. This truly is a gift which we are truly grateful to the generosity of everyone involved with Dana's Walk to the Stars - Dana really will walk to the stars! xx
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