Seriously? Can I Just Go Back To Bed?

Wow! Been a rough few days.

Girlie seems to have got a dodgy side effect from the amount of Ibuprofen she has been taking. We are talking Indigestion! She has been sick on and off since 1.30am Weds morning.
Tried unsuccessfully to get hold of the Consultant again, but surprise, surprise no answer.
Ended up with the fact that I had to ring the Children's Ward of our hospital to speak to a Dr there. He has suggested upping her Omeprazole to see if that helps.

Only thing is, now she's not eating I can't give her the new medication as it has to be taken with food. So the limp is back in full force. It almost looks like her foot is turning outwards when she walks. She is flaring in her other knee now, so it is getting to the point where she is really starting to suffer.

I don;t know what to do to make anything better for her. I feel so bloody helpless and it kills me!

One of those Days

Seriously, I am getting so fed up now.

Girlie needs a referral for opthamology to have her eyes tested. Now her consultant and opthamology are in the same building of the hospital, but it still hasn't been sent yet.

She needs a Naproxen Suspension (NSAID) to see if that will help control swelling of joints. Now that has to be specially ordered in for her and will take at least 10 days. I was told if this was the case, to get back in contact with the consultant. Can I get hold of his Secretary? Not a hope in that fiery place! Left voicemail to get her to contact me back but nothing.
So I need to get a prescription for Ibuprofen from the GP, so I call them and our GP has now gone on holiday for 3 weeks! So I can't get him to write the prescription. Can't get a phone appointment with any other doctor as they are far too busy today apparently. Means I have to call at 8.30 tomorrow in the hope of getting one then.

Vitamin D blood results not back yet. God knows when that will be.


All in all a complete nightmare today. Can I just go back to bed and start again??

About Me...

Thought I should do a proper introduction.

I am a 25 year old, mother of two :)  I am married, and have been for the past 5 years, been with hubby for 7 (get less for murder these days lol)

I read... A LOT, my best ever present was my KOBO Touch. It rarely leaves my hands once the kiddies are in bed. I read in the bath, in bed, whilst eating and too many more places to mention. I will attempt to read anything. I have eclectic taste when it comes to books.
Few of My Faves:

• Twilight (Yes I know)
• Harry Potter
• Fifty Shades (Not the sex, I actually like the story lol)
• Beautiful Creatures Series (most recent read)
• The Kingkiller Chronicles
• Anything Crime
• Stephen King (Green Mile my all time fave)

I am reading Pandemonium at the moment by Lauren Oliver. I'm only a few chapters in but already hooked :)

I love music, life would be so boring without it. Kiddies and I love nothing better than dancing round the living room to cheesy pop.

Vampires :) hubby hates Twilight, I love it. "Vampires don't glisten, they go "poof"" according to him. Although don't get me wrong, I love Blade, Underworld etc.

Zombie films are my passion, love them!!! Seen most of them and watch them regularly. Another thing to drive Husband crazy.

So that's a little more about me :D

Well...

We had blood tests :( lots of tears and an epic temper tantrum, understandable really. However, they have also tested her for Vitamin D, as according to the Consultant her bones are "thin"

Not sure what this means at the moment, but I shall be phoning for blood results over the weekend to see what they say.

They're testing her ESR again, last result was 70, so be interesting to see what it is at now with another two joints flaring.

We did have a lovely afternoon though, Girlie was totally spoilt with a Burger King and a Tree Fu Tom DVD

She's so brave, just taking it all in her stride bless her xx

Can't Sleep

Blood tests in the morning. I don't sleep very well before hospital visits, so thought I would introduce us a little more.

Girlie: now, what can i say about her? She's just turned 3. She has blonde hair and blue eyes. We call her Moos. She's funny, argumentative, stubborn, excitable, food orientated, strong willed and beautiful!! We love her dearly! Even when she's a complete pain in the backside. Which is a lot :)

Boy: Not mentioned boy here yet. He's 15 months, cute and chubby, a proper boy! Messy, noisy, destructive and hilariously funny at times. Although has a wicked stubborn streak like his sister :)

Me: The (in)sanest of us all. The glue that holds things together. 25 (feel about 50) years old, full time mum and insomniac. Hence why I am wittering on at 12.40am.

Hubby: boring old fart lol but for whatever reason we love him. Usually working, unless we have a hospital visit.

So... That's us. Your average family just trying to get on with the hand we've been dealt in life.

You don't need to be crazy to live here, but it helps lol

Night x

:(

pretty much sums up how I feel today. Seems like we've been dumped with this diagnosis and then been left to wade through it all by ourselves.

No support has been offered by anyone and I'm now starting to feel a little overwhelmed by it all. I have no idea who  is out there that we can discuss it all with and I feel like I'm being pulled under by the stress of it all. It would be nice if there was someone out there to just say "you're not on your own, there are people out there who can help"

At the moment we are just doing it all alone...

Official Diagnosis...sort of

Well, finally got some sense out of the consultant!! Girlie has Oglioarticular Juvenile Idiopathic Arthritis. Although this will probably change as she has more joints affected. 4 or under is Oglioarticular, 5 or more is Polyarticular. We are on joint 5 as her elbow has flared in the last couple of days.

She has been referred to an opthamologist as her eyes will need testing regularly as it can affect the fluid in the eyes (uveitis).

We actually see Consultant on 19th March at Rheumatology Clinic, and will have a greater idea of where we are going with the diagnosis and what we can do to help her manage it.

We are getting new NSAIDs to try and combat the swelling as general Ibuprofen is not reducing it enough and longer the joints are swollen, the more risk of permanant damage. So hopefully the Naproxen is going to help, if not we have to keep going until we find something that does.

So I guess for now, we just have to carry on as we are and see what happens. I am not very good at this whole waiting thing, which is why I get so frustrated having to wait for everything.

Bloods on Friday morning to see what her ESR, and ANA looks like. More chasing the hospital next week for blood results then...


Oh the Joys!!!

Normality....??

Girlie has to go in for more blood tests on Friday :( Not looking forward to that one, although she thinks it's great as she can go and play in the play room.

Hoping and praying today that somebody decides to cancel their appointment for Rheumatology Clinic tomorrow so that she can get the space. Selfish I know, but I really need to discuss the medication with the consultant and at least see if there is any sign of a prognosis. The waiting is driving me insane.

We had a lovely weekend at home, and girlie was in fine form yesterday, with smiles and giggles. Was really nice just to have a family day at home with no rushing around.

Looks like more joints may be beginning to flare though which is a bad sign, elbows are both looking a little larger than normal and her other wrist is beginning to look dodgy :( I don't think this is gonna get better any time soon. Just need to wait and see.


I HATE WAITING!

Read this today, about disabled children

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Mixed Emotions...

Well it's girlie's 3rd birthday today! I was so looking forward to this before diagnosis. Now it's here, I feel teary and emotional. It's hard knowing that she may have had her last "normal" birthday. We had another joint flare up yesterday, so we are now on four joints that are affected. Right ankle and knee, left wrist and a finger on her right hand.

Got hold of the consultant finally too. Her appointment is the 19th March. So another month before we know where we are going and how best to treat her condition. I understand that there are other children with it too, but seriously, over a month before she sees her consultant is a little extreme. Especially as she is on high doses of NSAIDS to try and reduce the amount of inflammation. As the new joint has flared, she's now on DOUBLE the recommended dose! And they expect me to keep her on that for a month?

 I don't know, I just feel so helpless as I don't know what to do to make this better. As a parent, that is what I am supposed to do. But it's now been taken out of my hands and I can't do a great deal about it. This is going to be a very drawn out process and the idea that it could get worse is scary!

Happy Birthday Baby Girl, Mummy loves you no matter what!

Introduction

Hi and welcome to the blog!

I decided to start this as it would give me a place to jot down all the feelings and stress, so I don't end up exploding into some sort of emotional mess!

My daughter (2 years and 11 months) has just been diagnosed with JIA. Juvenile Idiopathic Arthritis. I never even realised kids could get it to be honest. So to have this heaped onto us was a big deal. It's still early days yet so we have no idea of what it is going to hold for her in the future.

Waiting on an appointment with a Consultant in Rheumatology to get a better idea of what is going to happen, how to treat it and whether it will be long term or not.

So this is just the start of a long journey for us!