Aug 14 Eight days with consultants – the next chapter.

The next eight days are very important for Erin and us.  She has two consultant appointments in the next eight days, the anxiety has been bubbling inside me since we came home from Tenerife last week.  It threatens to overspill.

It is a stark reminder of this time last yr, in fact it was a A Level results days last year that our DDH hell really took off.  Almost a year to the day we shall once again be at the mercy of consultants.  Tomorrow should bring a diagnosis.  A diagnosis that for the past few months as been balancing on my tongue.

When a stranger meets Erin for the first time they often comment on her blue eyes.  They are a beautiful blue, like a pool you could drown in.  That compliment used to make me burst with pride, they are beautiful soulful eyes.  I said ‘used’ it still does really

but

you see it’s not just her eyes that are blue, the whites of her eyes are blue to and together this makes her eyes sparkle.  But it also signifies that the collagen in her body doesn’t work like most peoples.  Collagen is the bodies glue, it holds it all together.  Yet it isn’t holding Erin together as it should.  Or at least we don’t think it is.  She is too bendy, Erin’s DDH doesn’t explain why she didn’t walk or weight bear until 20 months.  Most with DDH will learn to walk at the normal developmental stages unless there is something else stopping them.

Erin gets very tired, it’s not normal for a 2 year old to sleep for 14 hours.  To sleep from 7 till 9 if they are left undisturbed.  Her tongue struggles to form words, the same tongue that wouldn’t breastfeed even though I had done it twice before.  This again, is it a co-incidence or does it build the picture?  The repeated chest problems, asthma, ear perforations are they linked?  Does her little body have to work harder than it should.

So many questions and yet just maybe we are near at getting the answers.  Has it all been coincidence or is it linked?  Have we just been unlucky this far or is this just the beginning? 

If we do get a diagnosis it won’t make a huge difference as everything will continue to be treated as it already is, with hip consultants, ENT consultants and speech therapists each working their magic.  However we would be under one umbrella, hopefully all singing from the same hymn sheet.  Hopefully working together and not in isolation.

So tonight will bring a fitful sleep, as I consider what tomorrow will bring.  Then next week those hips will once again be in the spotlight as they are x rayed and compared.  Have we had socket growth in her right hip, is she looking symettrical yet?