It's been a while since my last blog, I felt like i needed a break, I don't know why, things sometimes seem easier if you don't think about them so much don't they?
I keep thinking the same thing, this is as bad as it will ever get, nothing else can go wrong can it?
When I say wrong I mean we won't have any more things to worry about........
Why oh why do I even let those thoughts enter my mind?
I feel like my head is going to explode with it all, so I thought I would write about it.
We have had a flurry of appointments over the last few months for Callum, a couple of overnight stays in Bristol and Great Ormond Street doing various tests looking at genetic syndromes and metabolic disorders, most of them I struggle to understand as they are so complex and scientific almost.
With each test there is the hope that this one will lead us to a diagnosis, but there is also anxiety, as Callum is a bit older now he is becoming more aware of things hurting, and doesnt want to be held and poked and prodded, and I hate that he has had to have all these invasive and distressing tests done in the first place. But I think we may be a little nearer to getting a diagnosis.
A metabolic error has shown up a positive result and we are awaiting the results of a skin biopsy to confirm this. Bristol rang this afternoon to ask us to come for an appointment on Thursday to discuss the results.
We were also told that it looks like he has a very rare genetic syndrome, we are awaiting X-ray results to determine this. We are also awaiting his results from his MRI scan of his brain and lumbar puncture. We have an appointment in December to go through all of these together with the brain wave and muscle test all of which were done at great ormond street.
We were also informed that his b12 is low which needs to be investigated further, so more blood tests were taken on Friday.
I feel like I live at the hospital at the moment.
This is where we are up as at 11:00pm tonight.
Oh but then the other worry is my oldest son, we've had concerns regarding his hyperactive behaviour for a while, so today we took him to see the paediatrician. After going through it all with them they've said there is a possibility that he has ADHD.
You really couldn't make it up could you?
But I refuse to wallow or be negative about the challenges we are facing as a family, we are lucky to have each other and each others families supporting us. Things can only get better and with time things will be calmer and less worrying I'm sure. I won't pretend that it's not hard because it is hard bloody hard in fact, but we will get through it and deal with whatever the next few month have in store.
