Last week we started another batch of hospital visits.
The joy, of course, is immeasurable.
Last week they wanted to give her "hurts".
That's blood draws to you and I.
But we saved that for this weeks visit just in case Dr Wonderful-but-has-hidden-disagreeing-feelings-about-our-actions wanted bloods too.
Which he did.
That saved on two batches of hurts.
Belle does not DO hurts without screaming her head off and frightening other kids in the draw unit.
Belle was not psyched up at all even though she knew it was going to happen today.
She was shaking like a leaf, petrified, concerned, in tears, faking a sleep in her chair, jabbering to wash over the impending stabbage of hypodermic needle.
Dr Wonderful-but-has-hidden-disagreeing-feelings-about-our-actions was running late, which added insult to injury in the waiting stakes. This doctor is ALWAYS running late and I don't mean 10 minutes. Im talking almost 2 hours.
When you are waiting in a sweltering hot hospital with kids who are poorly, you wonder why diseases spread and others mutate.
However, after countless parents complaining about the delay, i reassured them all that he was worth the wait.
Because he really is you know?
He is a neurologist at Europes top children hospital - Alderhey.
We have been here many, many times.
Thorough is not the word to describe his appointments although, to be slightly negative, he has strong opinions where NOT needed. But you take the rough with the smooth.
Whilst waiting I administered Ametol (or whatever it was) to both her arms to numb the impending needle stabbage. This required two wafer thin plasters to cover the area to provide maximum effect of the numbing. Ellie and plasters do NOT mix. She feels pain more than your average or should I say her pain thresh hold is pretty pants.
This ensued tears and heartbreak and sobbing.
Its not good.
I allowed her to take a soft toy with her to comfort and her iPod to drown out any fears but really it was not good.
We finally gets to see Dr Wonderful-but-has-hidden-disagreeing-feelings-about-our-actions and there are other people in his office. There is a Physio, an OT and a Dietitian plus him. They are all ears as to the next step for Belles investigations.
I could cry buckets over the amount of times we have had to go over and over and over and over and over and over her case history and that how these appointments have led to bugger all. This time they didn't go over her history (we saw this Dr in March, pre-Nevada) and I have to say he was good then. He went over her notes and were rather hoping he was going to reveal some fabulous news over MRI scan that she had in May and the results of her Nerve conduction tests in June.
Not a damn sausage of enlightening information.
Our girl literally is one in a million.
There is something wrong but they don't know what.
She has a syndrome but they don't know what that is either unless they can rule out a Myopathy.
A biopsy would indicate a myopathy but they are invasive little ops and I have requested that this be a last resort.
The doctor asked me if there had been any change other than a little weight gain (big in our eyes, non significant in theirs as she has grown, therefore her height and weight ration is still on the 0.2 centile of her chart).
I mentioned that I was concerned about Ellie body hunching when she walks, like an old lady basically. And that her arms are flailing all over the joint when she breaks into a fast walk. She also has other issues too personal to mention but nothing to do with teenagerdom, if you catch my drift. You can see this as TMI or not, but a girl has to weigh at least 90lbs before she can start her monthlies.... Ellie wont reach that maturity for a loooooooooooooooong time to come.
He then spied that we had been to Nevada in her notes.
He kicked off BIG style.
He strongly disagreed that we did that.
Because obviously he is Ellie's saviour and of course we were going to turn down the invite just in case he didn't like it.
When you need a lifeline, you take it don't you?
I really cannot be bothered to relay the conversation but I did ask that he had to think of the times we have spent in the NHS hospital rooms being mucked about and passed from pillar to post to clinic to investigation to x-rays to operation tables, to MRI's to horrendous nerve conductions. Why wouldn't we go and why would he disregard the opinion of another set of eyes?
For crying out loud, you just don't know do you, I thought.
Forget that moment of horror and cue the fact this guy is tightly intrigued by Ellies presentation. He worries that her reflexes are oddly too brisk for a child whose muscle tone is shot. He thinks that he will never get to to the bottom of the mystery because Ellie is incredibly complex. He thinks she has a syndrome which means that our geneticist, Dr Darling-we-love-her is our only hope.
The next course of action he has planned is sleep obs, gastro, I think he wants Gait Analysis again and DAFO's, like majorly fitted and moulded from her hideous weight bearing valgus heal impression. I was somewhat quite keen to learn that their concern over her valgus heels is a priority for them. her heels have been like that for years and nobody has batted an eyelid before now.
Perhaps we really have found her saviour.
So there you go.
Drama in the hospital, another hospital appointment over with (I think we are on something like appointment number 156), one broken hearted 12 year old, one distressed mommy, one mad dog and a pappa who comes in from work to hug us all.