Ladies Camera Club

9 Sep 2008

She got hurts today **long post**

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.
People stare.
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.
But Nope
Nada.
Nothing.
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.
Well.
Jeeez.
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.
God no.
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?
Damn it.
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.

Ciao xx

21 comments:

Darcy said...

Huge,huge hugs.xxx

Just call me G said...

Add another hug from me.. Bless Belles cottons.. I was at an appt yesterday in hospital which ran over time wise and it was hot and sticky just waiting.. so being a child full of fear, anxiety and bewilderment must be terrifying...

Fingers crossed that answers come quickly

Gina x

Cyndi, Wetfish Designs said...

A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral. --Antoine De Saint-Exupery


Your daughter is that cathedral, and eventually someone will clear the rocks away and discover what you need to know about her.

Hugs.....

Cyndi

Jan Connair (Magpie) said...

Ack, Cyndi, that is a wonderful thing to say!!! And I hope it comes true very soon. I just ache for you when you post about Belle's trips to the docs. I hear the pure frustration that only a mom can have when something is wrong with her baby and no one can seem to sort it out! You must want to tear people limb from limb some days, or wonder if there's still time to go to medical school yourself!

Huge hug from a follower in the USA!

Terebene said...

Hugs from me, too. How frustrating and scary. You are an amazing mommy.

anita said...

blaahh.....poor ellie :(
I hope good news comes quickly
anita
x

Sue Nicholson said...

If I hadn't been popping by your blog for over a year now then I would never know just how strong your family is. It really shouldn't have to be this hard for you . . . it's so wrong :-(

I do hope very very soon that there is a light at the end of the tunnel {{hugs}}

I floated the idea of a HSMS meet up on my blog, a number were interested, would it be OK if I tried to arrange it for a day in November? Would you be able to come? Ellie is up for it, so is Maz plus a few others too :-)

BTW Have you seen Ellies Cuttlebug card in her latest post . . . honestly its fab :-)

So I will wait to here from you . . . can you leave a comment . . . I won't publish it.

Bye for now . . . Sue :-)

Sam said...

awww hugs to you and well done keeping your composure, I'd have had an ASBO for sure by now....let's hope the Dr helps Belle.

Rach said...

Oh Kirsty, sending lots of {{{HUGS}}} to you all. What on earth would that Dr do in your situation? Wouldn't he want answers for his child, and go to whatever lengths he had to, travel the world to get them, as you have. As a parent you do what the hell you can for your child - I guess he doesn't get that!

More {{HUGS}} xx

Kate said...

Bless you, hugs to Belle. I can't be with my kids during the 'hurts' because I don't want my absolute terror to rub-off on them! The Small-N-Grubby one has decided himself that its bad, boy can he run fast! I guess some investigations are better than being left to get on with it on your own??

Jo said...

Kirsty and Belle.. I'd come and give you both a hug if I was able.. you so don't deserve all this.

Keep your chins up.. Belle you're a beautiful young lady.

Speak soon xx

Eleanor said...

Couldn't read this without breaking my heart for you all. But you are strong and you will keep being strong and Ellie's day will come.
Massive love to you all, sweeties.
Big Ellie
xxx

Maria said...

I hate waiting for hospital appointments and get really antsy. And I'm an adult ..... Well so they tell me.

I truly hope that you get some answers soon.

Ooh, I've used cling film to cover that magic numbing cream. Charlotte found it a tad hilarious but no ripping off horrid plasters.

Happy Wednesday xxx

Rosie (Freycob) said...

With a mommy like you, she'll get what she needs because you'll never let those docs away with anything less than what Belle deserves.

Sending you big squishy hugs hun.

Rosie
xxx

Chris said...

My heart goes out to you both, how much do you have to do to get the answers you need ((((hugs))))
I have a terror of needles so I really feel for Belle and watching her suffer would tear my heart out too. Thankfully she has a loving mummy to cuddle and wipe her tears for her.
Keep strong
huge hugs
Chris xx

Terrie B x said...

Big (((((Hugs))))) to you all~X~

Thinking ofyou all Keep your chin up!!!!:)~X~

Rhonda said...

I am so frustrated for you! Keep strong, and know that you have plenty of friends here who care and want to help, even if that just means listening. :)
You are a good Momma, and don't anyone doubt that you know best for your daughter!
Hugs

Paula said...

Hi Kirsty
I really don't know how I found your blog as I'm a crafter but I really don't do scrapbooking.
In the past few days I've been reading all your posts since day one and my heart goes with you. What a wonderful woman and mother you are!I saw all the pictures you posted about Ellie and she is really the most wonderful girl I've ever seen with all the joy and cuteness and inteligence she shows!
Your're right. Your girl literally is one in a million!Although I don't know her, give her today an extra kiss from me, will you? And keep going with all your courage and fight the whole world if necessary to get the best for your child. I'm 54 now and never had a daughter but if I did sure I'ld loved her to be exactly as you are.
I'll keep following your blog.
Sorry about my english but this is the best I can do.
Hugs from Portugal
Ana Paula
www.fiosefibras.blogspot.com

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