This morning started as any other morning.
Had our specialist health visitor come round and talk about what’s happened; how BBG has developed, if there is any more support we can get, and to go through new reports and what has happened in appointments.
We left on the usual statement of if/when we get a call from Great Ormond Street we would give her a call.
We just started to do lunch and my phone rang, I recognised the number straight away.
It was Great Ormond Street!
On the other side of the phone was a very calm, friendly lady explaining how she was BBGs consultants secretary. How BBGs consultant has asked for her to give us a call. His isn’t unusual sometimes they call to ask a quick question about development etc.
Then she said, “we have some of the test results and the dr wants to see you Monday”.
My heart dropped and tears fell. Stupid I know, she hadn’t even said anything further.
All I remember hearing is that some of BBGs levels are low, one of the things has never been low… it has always been high… unfortunately because of what these particular things do it isn’t great! It’s all to do with the mitochondria. We’ve always known this is a possibility but hearing the words that something has got worse in the area that you’ve been hoping will be ok hits you like a tonne of bricks.
Monday we are seeing; her usual consultant, and 2 new consultants. She is even having more tests!
We still haven’t had all the tests back, which means who knows what will come next. All I know is that those 10 minutes on the phone felt like a lifetime! Those 10minutes confirmed my daughter is not well. In those 10 minutes even though she’s progressing outwardly inside isn’t!
People may read this and think you haven’t had a diagnosis, I’m over reacting to the tears etc. However until your in my position you won’t understand hearing those words, hearing that the one level which you have everything crossed to stay normal… drops. It breaks your heart.
My girl is beautiful, she is complex, but her test results are starting to make people move fast and it’s a scary time.