Settling Back into the UK

In the last week in the US Abigail had become very home sick, missing all those normal familiar things that are important to her.  I still wasn't on A1 form following the flu bug but I craved a vegetable! Something I hadn't seen that often in the food we had eaten. Parts of my body still ached and I still couldn't turn my neck properly.

We'd had a full last day, starting with the physio at 9am at the hospital. Today we were again accompanied by Chad the camera man hired by the BBC and the hospital's media representative Abby. Chad was going to film Abigail's last physio session and talk to us about our feelings.  As I've said, I still wasn't fully well and my emotions were running very high with our impending departure. I felt totally exhausted as the energy both physically and emotionally to support Abigail to get this far had drained me. Please remember this when you one day get to watch the programme.

Walking with Pods

Or Link : Sit to Stand in USA

Or Link : Trying to take steps..

By the time we got back to the apartment there were phone messages from Gene and Lettie, and their daughter Lydia, Lance and the 3 children, all wanting to visit and say their goodbyes. And of course we still had to say our farewells to the other SDR families at the Residents Inn. By the time our last visitors had left and we'd done yet more physio, we were up into the early hours packing everything up.   It felt strange packing everything up to return home. It had become home and there is, and will always be, a connection to a City and time that marks the beginning of a whole new life for all of us. I missed lots of things about our proper home, including, a balanced diet, and my friends and family but having Skype and being able to chat to our nearest and dearest didn't actually make it feel that we were thousands of miles away. Going home meant the start of the very hard physio regime on top of all the normal daily duties. There wasn't enough hours in the day before, once the girls came in from school to get everything done let alone add the physio!

Abigail was so excited to start the journey home.  Her whole mood changed as she looked forward to seeing everything familiar once again. As the aeroplane made it's final decent to touchdown at Heathrow it was to Abigail singing in her loudest voice 'lights will guide me home' a line from the Fix You song by Coldplay. We had listened to this together in our lounge at home, before we'd gone to St Louis,  and it's a moment we had imagined.  I'd told her that for me it would be a very emotional moment because we would all have gone through so much and be so glad to finally get home to a new life ahead. We had sung that song so loudly with smiles on our faces but tears down our faces and now here was that moment and yes I had those tears I had imagined down my face.  It was a big moment to be back, where we all belong. With such a bigger, brighter future ahead.

Our very special friends Julie and Patrick met us at Heathrow. Oh how good it was to see them and be driven home.  We had only managed about 3 hours sleep on the plane so I wasn't looking or feeling my best! It felt so good to walk through our front door at lunchtime.  Julie and Pat had looked after the house in our absence and it had been hoovered, dusted, cleaned, there were fresh flowers and a full fridge and it was even decorated with personalised welcome home banners and balloons, which the girls thought were great.  A fantastic homecoming. The girls managed well to stay awake the rest of the day and Abigail even managed a session on the treadmill before bedtime.

The following day, Sunday, Talia woke around 2.45am, I told her to have a play in her room quietly and put herself back to bed when she was tired.  I think she was awake until around 4am but the next think I knew it was 11am.  Talia was asleep in bed next to me and there was no Tim.  I went off to find him and there he was fast asleep in a Princess bed!! (Pushed out of my own bed my small tired child..!!! - Tim) That afternoon we had to get out in order to make Abigail walk.  She'd spent the day before travelling so hadn't been on her feet at all and now everytime we tried to get her to stand she moaned and groaned begging to sit down.  There is no incentive for her to walk around the house. It was raining so with the excuse to buy a pedometer we took her to John Lewis. It amazing what a distraction a shop is and how much the moaning and groaning reduced.  I didn't say stopped, but in comparison to home or the hotel it was significantly reduced because she was distracted by things on a shelf. I'm not saying her complaining isn't justified.  This walking lark at this stage is very hard work for her body.  It must compare to an able body person walking up a mountain everyday. However, in order to build the strength up, she has to walk. She did well that day.

Monday was Abigail and Talia's first day back at school. Abigail was bursting with excitement. She couldn't wait to get stuck in.  The regime at the moment is to go to school in her wheelchair but then that should not be used again until it's time to go home. In the corridors to get to the hall for lunch and for playtime outside she should use her walker. Inside the class room she should do one handed walking with her helper or use her pods. We must remember that Dr Park said her walker is far too good for her and doesn't challenge her at all. However, at the moment we are just trying to build strength in her legs, before moving on a stage.  She was very tired by the end of Monday so her first session with her private physio, which started at 6pm, probably wasn't the best session! Afterwards when it was time to go to bed she looked up the stairs and said to me 'you can't seriously expect me to climb the stairs after I've just done physio?'  My poor little girl was utterly exhausted. For the remainder of the week it's been physio at home with me, followed by the stretching exercises before bed.

Two amazing things have happened this week.  The first is that Abigail has learnt to tap her foot for the first time in her life ie flex her foot at the ankle and tap along to the beat of music. Previously when she had attempted this motion it had not been possible for her to isolate these muscles and she'd lifted her whole leg attempting, but now, with all the spasticity out of her feet she can do it. This pleased her immensely.  This is the start of her being able to see the benefits the surgery has provided. This action is paramount to the correct walking pattern and how the foot is rolled in order to perform a step.

Or Link : Foot Tapping

The second incredible thing to happen is that Abigail has really been trying very hard with her sit to stand exercise. i.e. being able to sit on a bench and get herself to a standing position with control.  In the last two days she has been determined to do this and tonight she not only achieved this but she went one step further as the video shows. There were big celebrations and shrieks in our household tonight.  She has never been able to do this before.  Yesterday we were only 5 weeks post op.  Abigail is beginning to touch that bigger brighter future that I can only glimpse at the moment but that I know is there to be caught.

Or Link : Sit to Stand

Or Link : We are making progress...

So many changes can happen in just a single week.. it is such an incredible journey.