Our Physio Journey So Far...

I had such an overwhelming response to my first post. I knew this was something that would get a reaction, just wasn't sure what kind and how big. I've had messages from both sides of our family (close and extended) saying they were in tears reading it, and sending out love and support from all over the country. Selfishly, I'm glad it's sparked that kind of response. We live this every day, and I think only now our nearest and dearest are beginning to understand quite how difficult and isolating it is.

BUT I don't want this to be a place of all doom and gloom. I want to share Alba's achievements and positive days as well as the bad. This week we had our first appointment with Orthotics - a team able to provide us some extra support for Alba's movement, with aids such as shoes, splints and braces etc. I thought this would be a good time to share our physio story so far...

We were referred to physio from our first visit to the GP back in September 2021. I was surprised it didn't take long for the appointment to come through and we soon had a video call with Lizzie. I know at that time most services were still restricted to online only, which seems a bit mad for something so physical. But we had a great chat about where Alba was at and what our hopes were for her movement. Alba only began crawling and properly rolling around at 15 months. I'm not a professional and am also very aware that every child is different, and the range for these things varies massively. But at that stage, most of her little friends had been crawling before they turned 1, and were now pretty much all gaining confidence on their feet. You don't tend to get much support unless a child is still not making progress at 18 months.

So that September, Alba was 19 months and still only able to crawl, not often and not really with much purpose. She could just about stand with support, but her stance was wide and her feet pointed outwards. Over the next few months we had appointments every 4-6 weeks that turned into face to face appointments. We discovered that Alba has some hypermobility - from the hips down her joints are super loose and bendy. This means that she has to work extra hard to build up the muscle required to counteract that wobble. I remember the physio saying that even being on all fours was difficult for her and required so much more strength than a non hypermobile child. (It now made sense why it had taken so long for her to crawl). We worked towards getting Alba to stand for longer periods of time (always holding on to something), trying to get her cruising (side stepping along the edge of the sofa etc), showing her how to bend her knees to sit down (she would often begin to shake when her muscles got tired, not knowing how to safely get out of the standing position), and how to stand up from a box sit (on our knees/a bench/pouffe).

Progress felt very slow, but Lizzie once reminded me to look back on how far she had come. When I remember how far apart and rigid her legs used to be, her little toes 90° further out that where they should be, I realise how much she has progressed. Her legs now sit straight underneath her body with soft bendy movements at the knees, and her feet have moved in by about 45°. When she is barefoot and doesn't have the ankle support, her toes point back out and her stance widens. Apparently this is because it feels safer and gives her more balance, which I guess makes sense!

Alba has a little dog on wheels that she pushes around the house, but we wondered if there was something we could use outside and at the park etc. She had such limited independence in outdoors spaces, especially as she's not keen on different surfaces and textures like grass! I asked Lizzie and within a week I had a call saying "We've got you a walker in Alba's size. The only thing is that it's bright pink -is that going to be okay?". Of course! The brighter the better. At our last appointment with Lizzie we were given Alba's Marcy Walker. For anyone as unknowing as me, Marcy Walker is actually a famous American actress. So when googling this supportive equipment it took me a while to realise why I was getting images of a blonde haired lady! Alba took to the walker immediately. I'll never forget just as we arrived home, the little boys next door we're playing in the lane as they usually did. For the first time, Alba was able to join them and it was just the most magical thing to watch.

We've still got a long way to go on Alba's journey to independent walking. But I'm so amazed at how much she loves her walker, and will make a beeline for it as soon as she sees it. She toddles along the canal, stopping to watch the leaves twinkling in the wind, or the ducklings swimming past in the reeds. She's taken her first steps on the beach, carried some foraged wild garlic back home, stomped up and down the campsite on holiday, rambled over the grass on the common and lapped up the attention at a wedding. We've had people clap, cheer and urge her on which gives us all a bit of a boost. And this week - as I mentioned at the start - we had an appointment with Orthotics and have ordered Alba's first pair of supportive shoes. I was taken aback by the catalogue I was given to choose from. There was genuinely more choice than if we'd gone to Clarks.

We've had a lot of negative experiences with the NHS so far, but I can say with my hand on my heart that Physio is the one department who have come through shining since the start. I know everyone is stretched at the moment and in most cases I wouldn't blame individuals. I'm a huge fan of the NHS and I think we are so incredibly lucky to have them, but we've not had a good experience. So perhaps it stands out even more when you feel like a team is doing absolutely everything they can to help. I'm looking forward to seeing the difference that the new shoes make and really hope they provide the support needed for Alba to build up her muscle strength. We continue to have physio appointments every 4-6 weeks and have a new lady working with us now -Jenny. Looking back to where she was a year ago, she really has come so far.

You do you, baby girl x