A diagnosis #hms #eds111

Erin has not had the easiest start in life but she still keeps smiling and that is so important to me. I thought that she had come through all the operations and procedures quite unscathed.  Until today.

This morning started with a consultant appointment for her grommets, on the way I took a call to say that a physio appointment had been cancelled and did Erin want it this afternoon.  Obviously I said yes, it’s my day off and I have been desperate to see a pead physio with her.

The first appointment went well.  Although I was worried that I could see her grommets and I feared it had slipped out it turns out that because she is so little and her ear cannels are so short I can see the ends of the grommets.  All is good.

However the physio appointment was slightly more traumatic.  Erin happily stripped off in the presence of the physio, she listened to Erin’s history, she noted the many bruises on Erin’s legs, she commented that Erin has been through so much.  I agreed, knowing my brave little girl took it all in her stride.  Until.

Next the gentle physio asked Erin to get on her bed so that she could physically examine her.  My brave, beautiful girl immediately dissolved into tears, she started shaking and she cried out that she didn’t want to go to sleep.  That they were not giving her an operation.  That she wanted to sit on mummy’s lap.  She physically ran to the corner of the room and cowered (shit – the tears are falling as I write, I haven’t told her dad this bit or my own parents who rang to ask how it went, I can’t find the words to vocalise but  writing it is a little easier). My baby is more scarred than I realised.  The legacy of ddh has left its imprint.

The physio examined her as Erin silently sobbed on my lap.  We coaxed and cajoled Erin to see how bendy she is.  The result was, as I already knew, Erin is hyper-mobile in all her joints.  The physio said that Erin has Hyper-mobility Syndrome.  I knew this, it is no surprise.  I’m glad that finally the professionals are using the terminology that  makes sense, that can be explained to others.  The words that her school will understand when she starts in Sept 2014.  Up till now it has been alluded too.  I totally get that with the added implication of DDH it has been difficult to understand why she didn’t walk until 22months. 

As for the future – who knows yet.  She will hopefully be fine, but the reality is she will suffer joint pain, more discloations and possible broken bones but no matter what we will smile.  The positive part of being diagnosed is that it will become a way of life for Erin and for us.

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