I haven’t really blogged for a while… my mind just hasn’t been in the right place for it.
Other than physically being busy, with moving house, appointments, run up to Christmas and many other things. Mentally and emotionally I’ve had nothing in me. It’s really stopped me wanting to write as I didn’t know what to write.
We’ve been in our house exactly a week now and 6 days before that we went up to Great Ormond Street. We had hoped, prayed and had every fingers crossed for an explanation of what was going on in BBGs life.
Dad was adamant that we weren’t going to find out anything, he was adamant that we would go and just find out more of what she didn’t have.
He was right to a degree.
We were told all her tests had come back inconclusive or negative. We were told she hasn’t got a list of illnesses, they were testing for. We were however told she is extremely rare, a lot rarer than they had originally thought and she will probably be the only one in the world with her condition.
Just as we were wrapping up, I mentioned that BBG had started to crawl and then suddenly drop. Almost as if she was crawling and then her nerves just give out. She was napping at this point and almost on cue she choked on her own spit and I mentioned this had been happening frequently.
All of a sudden the consultant decided to dictate a letter there and then in front of us. He took a video of the video we had of BBG falling. He looked at pictures of when she is fine and when she is having an episode. It seemed a whirlwind of activity happened.
We were then asked a lot of questions, ones which we answered as detailed as possible. We were met with, ‘her episodes do affect her respiratory system’ which confirmed our worst fear, that one day she could have an episode and her body could just shut down her limbs like usual but potentially could also shut down her heart and lungs. The fear being if this happens she would be put on life support and they won’t know if her body would be able to restart itself.
We now know they are looking for a certain condition, this condition comes in a variety of forms and BBGs looks like a rare form. We know that if she comes back with this condition it isn’t good.
We were then asked if we wanted to go in a special research program, where they look deep into the DNA and into the genomes. To be honest I got lost at that point. I signed the forms however, as I want to know what’s wrong, I want to know how we can help her, and so if another pot of blood is needed to be taken then that’s what we need to do. This research can take years for an answer and this is ok too, we aren’t going anywhere.
They are now looking at helping future families know what to expect and give them a prognosis. To hear that our baby will be used as a prognosis tool for other families so they know what to expect, broke my heart.
Without knowing what my baby has the doctors cant tell us anything in regards to quality of life. Sometimes they don’t have to say anything; It’s in the subtle change of voice tone, body language, what’s not being said. It’s in the words they use and the way they don’t say certain things. It’s the way they talk between each other in hurried rushed tones. It’s the way the flurry of activity happens when we mentioned new things happening.
I walked away from GOSH knowing my daughter is getting the best possible care.
I walked away from GOSH with none of my doubts answered and actually although the doctors aren’t allowed to say it’s life limiting, due to the lack of diagnosis, the doctors said enough for us to know her prognosis isn’t good.
I walked away from GOSH with a head not in a good place.
My baby was regressing internally which was scary but I couldn’t see it, now it’s external regression and it’s scaring me a little.
This is why I decided to take a little break from blogging. I needed to refocus, rethink and collect myself.
For now, I will look at the fact no professional thought she would sit unaided let alone crawl and she is doing both of these. My baby often proves professionals wrong and I know deep down she will prove them wrong again.