I don’t plan to romanticise DDH and only tell the good, this is also my place to vent and hopefully show other parents going through this the good the bad and the ugly.
Erin was incredibly frustrated yesterday, she has realised how constricted she is. She asked to go outside so I thought putting her in her buggy in the garden might be nice. Then she broke my heart when she asked to put on her shoes. Erin then kept pointing at he trampoline and I had to tell her she couldn’t go on it. Erin has been throwing toys that I give to her and generally being very vocal. The minute I leave the room she is shouting ‘mummy’. It is like having a newborn again, I am on edge constantly trying to anticpate her next need. And they are needs not wants.
My dad came up trumps and quickly adapted a rocking horse she had by putting a block on the rocking bit, adding a strap to hold her on place and now she can at least sit up more vertical. This means that she can feed herself a little and play at a table the occupational therapist gave us.
Erin usually loves her sleep and sleeps a good few hours in the day but she is finding it very difficult and wakes very easily as she can’t wriggle and self settle. The cast is far more cumbersome than I had appreciated it would be. It is also very heavy and I am torn from having to go down the hoist route. I don’t want to depersonalise moving her, but at the same time I realise that I need to protect my back as I am going to need to look after and move her for the next year.
There have been a few good parts too, she is already saying more words because she has to vocalise now and can’t just point or go get whatever she wants. She loves colouring too and can settle quite nicely to that at the table.
Hopefully the frustration will pass as Erin begins to accept her capabilities have changed.
