New report and still stuck in the dark

Today we received BBGs GoSH report. We always hate these reports coming through as when you live with a condition that becomes the new normal. We know of the delays, we know of the different abnormalities, but to us BBG is normal and perfect. Even though the drs and consultants speak to you really openly and that hits a nerve, there’s nothing like a good piece of paper where you physically read and re read and re read again everything the doctor has written.
Whenever a report comes through I get the previous reports and see what is different. I see if the wording is still sort of pointing in the same direction, I look at the blood levels and see if they have changed. I google all the words I don’t know, I then go on NHS websites and foundation websites to read more into the abnormalities. I google the symptoms all together to see if a new research paper has come out. I really make the words come out of the paper so that I understand exactly what is being said and what is going on medically with BBG.

The last couple of reports the urine tests have just said inconclusive. Today these test results were explained a bit further. They have mentioned kidneys before but this was months ago when The first load of tests came in. The consultant advised they would need to re do the tests as they weren’t happy with them and they didn’t correlate with anything they were seeing. Well the results have now been roughly the same 3x and we have been told that most probably this indicates renal tubule dysfunction and a renal tubular leak, so basically the kidneys aren’t doing their job. We will be speaking to GOSH about this when we are up there on the 17th. 
We were told (this confirmed in the report) that they are finding it hard to fit all BBGs symptoms into a unifying diagnosis. We were told we may never know what is wrong with her and to prepare for this result. Everything is still pointing that way. The doctors and professionals don’t know what BBG is going to do next, she is regressing to some extent and they don’t know why, so they don’t know if this will continue or stop or how fast this regression will happen and that scares me. The hypotonia is now the least of the doctors concerns over my BBG I always thought it was one of the bigger issues. 
I will however hold onto the postives, we were told BBG wouldn’t sit. Well she started to sit!!  It’s almost as if she’s saying, ‘mum I know my body isn’t doing the right thing,  I know I’m not developing right, so here’s a little present, a little light in the darkness!’. It was just what we needed and I will hold onto this positive as she is progressing movement wise, just inside she isn’t doing well. 

My baby is perfect at being BBG and that’s all I need. 


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