Ladies Camera Club

12 Mar 2008

No room to breathe

Ok, one day in Hospital is one thing but two days on the trot is enough to drive your to distraction. Alderhey hospital is 20 miles from us and is a nightmare to reach. Then when you get there its a million degrees hot, full of germs, screaming kiddies in pain and Doctors who are running 1 hour late. Believe it or not I am grateful for the appointments to have Belle seen but they usually result in "come back in 6 months". Yest was Endocrinology which proved that Belle is far from reaching puberty and requires a bone age test and hormone injections to determine her state of growth - it will probably be in 6 months time when the appointment will come round. Ok, cool beans I think. At least there is motion.
But today
TODAY.
Neuroscience. The field in which is more geared to Ellie's condition. The field in which has negated her the full attention of her needs. We waited for ever to get to see our Doc and when he did invite us to his office he explained that there would be interruption's as he was on call. FABULOUS. Its not as if I feel crazy enough having to plead with these guys that Belle needs help but interruptions means stopping and starting as I am in mid flow. And when I am in mid flow I really dont want to stop. It breaks the momentum. It breaks my drive and all I bloody wanted, if I am honest is a little bit of interest and continuity.
When the phone calls, bleepers and staff interruptions has calmed a little, this guy peered a little closer. I dont think both Belle and I have experienced a doctor who "peered". Like, edging a little nearer with some kind of interest. And his brows raised when she had to remove clothing to exhibit her rather baby deer-like legs - all crooked and awkward. And how he noticed how hunched she is when she walks. And how thin she is and how undertall she is. And the more he peered the more I thought "shit, he wants to help". My eyes welled at this new experience to be honest. And I was so proud of Belle as she did as she was told even though she was being prodded and poked for the millionth time in her life.
This Doctor promises that he will try to get to the bottom of things but like every other Doc we come across he also added he might not ever find the root cause. But he did remark on her incredibly brisk reflexes despite her lack of muscles. He noted she was on the WRONG form of mobility (we went through hell with that last year and I mean HELL and he tells us this NOW?). And he noticed a curvature in the spine. It was like he was just going to tell me right there and then what the hell was wrong with her because his 3 little "notices" was bloody brilliant. And as much as I sent out the receiving signals and the need in my eyes, I knew that those 3 "notices" were enough for now. And then, OMG..... THEN we discussed the big no-no of all big no-no's. The fact Mark was subjected to anthrax injections, NAPS and depleted uranium during the 1990-1991 gulf war. We feel its important to mention this to all of Belle's doctors because these could have contributed to Ellie's suffering. We know that most Uk docs are skeptical about this. Purely because of "Why would they try and research this query when effectively the MOD and the NHS are governed by the same purse?". We realise its not something that can be looked at from the NHS. But it can if I rally more about it. Somedays I'm proactive into researching it and other times I think - why should I bother? But when Mark and I look at the statistics of children born post 1991 gulf war, it makes us so mad and so cross. They are born with missing limbs and body parts - obviously much worse than Belle so we are the "lucky" ones, if you can call it that. But still, its a common link - one which is just being swept under that proverbial carpet until some interfering cow (me) rakes it up.
I just dont have the courage just yet but watch this space.
So Belle had that very eventful meeting which will mean she has to have nerve conduction testing again (not nice at all, poor little lamb) and MRI tests and even worse, another biopsy. :( But these steps are all in the right direction and necessary. However they have been done in the past and Im so uncertain whether they are absolutely necessary. Do you know what I mean? No, neither do I!!!! Belle was also seen by the millionth physio today who was just so peachy with her. Belle has to have her pushchair upgraded to wheelchair (this is a big step, quite frankly because she will still need us to push as she has bugger all strength in her arms to manoeuvre it herself).
Sigh.
No more NHS for a good while now until after Nevada. Im so positive about both Nevada and this new Neurologist. just wish that all of Ellie's doctors would just sit in one room for 5 minutes to discuss her. Id pay for that little treat. But nobody talks to each other in all 4 departments that Ellie is governed by. Its all medical notes and head scratching. It drives me bloody cuckoo.
Anyway.
Upon coming home Belle received a wee parcel. All we know is that this beautiful little unicorn necklace came from a little girl calle Eleanor. Belle is besides herself with it, she really is a trinket girl. And then on Friday just gone she got this BEAUTIFUL pillow pack stuffed with delicious chocs. Belle loves it so much that she doesn't want to untie the ribbons.
Isnt my girl the most luckiest, happiest lady on this planet? And yeah, those lips are still ruby lush and full of kissy woo woo's. Mwah Mwah Mwah. SWEEEEEEEET xx

14 comments:

em said...

This is so hard for me to just read...I can't imagine going through it. And still with the smile on her face. She's one amazing girl!! (And you're one amazing mom!)

Jenny said...

How good that you have some small progress happening! I wonder whether you could use any leftover fundraising money after Ellie's trip towards an electric wheelchair?

Jenny x

Muckyfingers said...

I agree that it is so important that they know about the injections M received. The gov can't keep covering up if the results go on. I shall keep my fingers crossed that more information and help will soon happen for Ellie. Take care.

Misty said...

She is such a doll. Truely. But you already know that ;-) I know the whole doctor thing works differently there than it does in the US but could you possibly get copies of the doctors notes to take with you to the next doctor? Lord knows you'll never get them in the same room but that may be the next best thing. Anyway, I'll say a prayer for your sweet Ellie and your upcoming trip. {{HUGS!}}

Sharon said...

So lovely to see Ellie with delight in her eyes about her pressies. She is a gorgeous princess and keep going Kirsty and Mark. Your Ellie can only shine brighter as she blossoms in to a young lady. With love, Sharon (diamonddiva) x x x

ania said...

Such great news. It's ok to feel hope. And doctors from diff. dep sitting down having a quick chat about the same patient? Don't make me laugh. Good luck in your future endeavors :)

Sue Isaacson said...

You are such a good mom Kirsty. I wish only the best to you, Mark and Belle. I hope that Nevada is the key to finding things out.

Anonymous said...

Hi, just reading your blog and noticed the bit about Belle being upgraded to a wheelchair put still needing to be pushed because of the weakness in her arms. I wondered if you had heard of the charity Whizz-kidz, whizz-kidz.org.uk which provides electric wheelchairs especially adapted to suit the childs needs. My daughter Meg was lucky enough to be given a wheelchair by them 10
years ago, when she was 7 which she used up until 3 years ago. I thought it might be worth a try as a powered chair can give a child so much more independence. We also spent the day at Alder Hey although Meg was in for the day having an endoscopy. I know exactly what you mean about the heat, screaming kids and doctors running late!
Colette

Roz said...

Those pics of ellie are adorable, and what wonderful gift for her to receive. Sounds like the hospital went well, fingers crossed they can give you some answers.

Jen said...

Oh darling, can we dare to begin to hope??? I SO know what you mean about the NHS, having worked in it and all. It's far from ideal and normally if they are on call their clinics should be cancelled, but doing the doctors' rota is a huge minefield in itself (I know this too firsthand, as my boss was in charge of it, and ooh what a pain it was!) and anyway, more cancellations are not needed are they? It's a huge foo, as Maria would say, but, BUT, maybe this neurologist is on to something, and I'm hoping for you, my dear, and for Ellie too, that between him and Nevada you'll get some answers. Does Ellie qualify for an electric wheelchair? So she won't need pushing and all? Anyway, take care xxx

Louly said...

Hi Kirsty, I've just found your blog and I just wanted to say how touched I am with Ellie's story, by the sounds of it she has the perfect mum to support her. Keep up your hard work, and I send lot's of love and hugs to Ellie, what an angel she is.

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