I **think** we have slept off the jet lag.
(She says as her head is doing the nodding dog on the keyboard).
8 hours lag isn't easy to cope with and Belle slept for almost 15 hours the day we got back.
Can you believe she was desperate to get back to school for Friday?
Cool. Like, OMG brilliant.
I'm desperately wanting to relay more about that and its name but we have the media watching our every move and I'm not having anyone steal Belles thunder just yet. This is our family news and I have told very few friends what she has too. I think all will become a lot clearer and better once her blood results come through via the genetics team at the Lili Claire Foundation. Once they are in I will be delighted to give you all the low down. There are also more bloods to be taken here in the UK (it is not cheap for blood draws in the US.... in fact its horrendous in cost) as well as blood from Mark and I..... to try and ascertain a genetic fault or indeed a mutation.
Those brilliant doctors in Nevada know their stuff.
They ruled out Coeliac and Marfans syndrome which obviously rules out Turners and Noonans syndrome. Their fix was on Belle all the time - there was so much dedication to sharing thoughts and concerns to us all. It really was a treat to feel involved and advised. We were stunned by the professionalism and efficiency. Which kind of made me feel sad about the NHS. I mean, I should be really pissed. Like, beyond forgiveness. But our system works on little cost and lack of resources - we know this because we have experienced this. But that doesn't count for the poor bedside manner displayed by some of our very own "professionals".
The whole history of this condition is quite silly when I read it out or relay it to my friends and family. Infact it makes me laugh sometimes. But I think that is down to the nervy edges around the story. And even though its a he said/she said story.... each word is true. Like - the gods honest.
This noise in Belles chest?
I went to our doctor precisely 6 years ago. My friend Bobby will attest to this. She heard it too. My momma has heard it and so has Mark. Belle certainly can hear it - she points it out to me on occasions. And the Doctors here found nothing. And the squeaks continued, especially when she panicked or got upset. We even heard it in her sleep. So I got second, third and fourth opinions. But nada, nothing, zilch. I even got referred by our own GP (who said he could hear a little something) to a heart specialist here in Wigan.
And Belle and I walk through the door of the specialist and sat down. And the whole time he stared at us as we made our way to sit. And the look on his face was of disgust. And I thought "Holy cow, he is a very mean looking man". I seriously thought I had walked in naked or something.
So he cleared his throat whilst giving me one huge stink eye and said
"And what are you doing here?".
Remain calm Kirsty, you are here for Belle.
"My doctor referred my daughter to see you".
"And what exactly for?"
And I thought .... duh, hello? Because she has gout in her left foot?
"Our GP heard a noise on Ellies heart and he thought you might like to check it out".
I mean, as if I would just go to a heart specialist myself - without a referral.
And still giving me the stink eye he got snarky and said
"Well I only treat children with blue lips. And SHE doesn't have blue lips".
"Well I know she doesn't have blue lips but she has a squeak on her heart - would you care to listen?"
"No" came his reply. "I think she just makes that noise from the back of her throat. Kids do that".
By then, steam was belting out of my ears and I reached for my imaginary 12 bore sawn off shot gun and hovered over the imaginary trigger.
I begged him to listen and he wouldn't so (rather pathetically) I just started to cry. More out of frustration than anything. And because I started to cry - so did Belle. And when Belle cries, the squeak is quite loud and obvious.
And it was audible alright.
The nurse that was in for the chaperon could hear it and looked at the specialist and the specialist refused to put his stethoscope on her chest wall and said
"That is definitely coming from her throat. There is no way that is coming from her heart".
So I went home to cry into my pillow and try to deal with more people disbelieving in Belle.
And for 4 further years we have lived with 2 more doctors telling us it was nothing.
UNTIL WE SAW DR BILL EVANS.
Who greeted us, slapped the gel on Belles chest, took his ultrasound device and found it in 20 bloody seconds.
And he told us exactly what she has.
And he showed us what it was.
And we could see it.
It was there.
It was really there and it had always been there.
And we were right.
And Doctor Stink Eye should be sent back to med school to realise that even if your lips are not blue, you still could have a heart condition.
You think that's bad?
Then please try and empathise with more horror stories we have encountered trying to understand Belle's problems as well as hundreds of other mothers out there who constantly bang their heads against a brick wall out of pure desp.
Back with pictures tomorrow.
Needs more sleeeeeeeeeeeeeeeeeep.