The first few days at home were nerve wracking as you can imagine, the home had turned into a hospital. Any slight change caused panic, every time she slept we watched her obsessively always watching to see if she was still breathing.

On one occasion very early on, she had choked and vomited just after a round of important medicines and gone very cold and as new parents we spiraled into panic, driving through the traffic ignoring all road conventions to get her back into the hospital again.

We arrived in a state of near nervous breakdown and we dragged a doctor away from a patient and ran through to corridors to where Emily lay, she took one look at Emily who now lay there peacefully as though nothing had happened. Emily smiled at the doctor and the doctor smiled back. and she declared that everything was fine and that there was nothing wrong. and our defense of "But she was dying.. I swear it" sounded hollow and a bit stupid, The doctor understood I suppose as it was our first emergency and just to make us feel better kept her in overnight, more for our sake than hers

Since that day, we've learned to read Emily a little better and the medical emergencies have faded and our only unscheduled stops are now only when she pulls the medicine tube out from her nose with a playful smile and proudly shows us what she done.. its from there we know its another trip to kiddy casualty to get it reinserted again. The nurses are getting to know her well and we have almost tried every cot in the ward now, just a few more to go till we get the full set.

As time has gone on, thanks to the support of all the agencies involved Emily has gone from strength to strength, growing all the time and she has had the medicines withdrawn one by one until we are running a much more manageable number and life is starting to return to a kind of normal....ish