Ladies Camera Club

29 Nov 2007

Being brave

I mentioned in my blog post that Belle was due to be examined today. This is the first step in our fight to get the statement of physical needs at school. She was not well at all and not up for examination but its a very important step that we can ill afford to lose time on. After the Doctor telling us that her height and weight is under the 0.1 centile (normally Ellie has been following the trend of 0.4 centile), I started to panic. We know she has always been underweight and short in stature but the fact she has dropped 3 centiles in a year is freaking me out. And you wouldn't believe the amount of food this kid puts away in her tummy. The examination lead to blood pressure and monitoring. I was puzzled why the doctor was spending such a long time listening to her heart. The doctor turned around and carefully stowed her stethescope into her pocket and barely gave me eye contact as she asked if Ellie had undergone an echo test on her heart. No, but 5 years ago Ellie started to create noises from within her rib cage that sounded like a sqeak in time with her heartbeat. We had begged for help from two heart specialists (after a referral from a Doctor who had heard it - just your average GP) 4 years ago. he thought is was a pre-cardial rub, a condition prevailant in over 50's. Upon referral to one heart specialist and upon entering his office he took one look at Ellie and then at me and told me he refused to examine or indeed treat a child who came to his clinic and did not have blue lips.


You think Im joking that he said that?


You bet your rump steak I am not.


(I tell you what, I could and will consider writing a book on NHS put downs...... like one Doctor almost 10 years ago told us that what we see is what we get with Belle.... Mum - you can vouch for that, you were with me **waves to my Mum and Dad who read this every day**).


Anyway.


The other Heart specialist refused to hear Ellies heart whilst she was under duress. Its either under duress or complete sedation that this noise occurs. The only way we could bring on duress was either cut her finger nails or brush her hair (which, sadly makes her cry). He thought it was inappropriate for us to cause this just so that we could proove that Ellies heart was making this really funny noise. We then figured that if had no concerns then we should have none too but you can imagine I was furious. But I had proof I wasn't going mad as both Mark, the initial GP and my Mum had witnessed such a sound.


So anyway. It turns out belle has a heart murmur which needs to be investigated. BRILLIANT. Just what she needs. That poor little sausage has done bugger all to anyone. She deals with so much and now she has to deal with this. I ask - can we take anymore? I myself have to go fro an ECG as it is on Monday. Its really not fair. So those who know anything about heart murmurs (without me freaking out by looking it up on Wikipedia), please tell me its just nothing. I tried asking today but I was just stunned. Poor Belle spent most of the interview/examination on my lap, asleep. She was hot but her face was pale and eyes really sunken. She really is full of cold right now. Im hoping the cold is just the cause behind this blip thourgh the docs stethescope. Please keep your fingers crossed. Will remain positive until then, just adding this to another piece of life's challenges :)


Breathe in. Exhale.


So anyway.


Who sent me another Enid Blyton book? I don't have a postal code so I have no idea where it is from. No note and thankfully no bomb inside the envelope. And not everyone has my address (just checking google to see if I am traceable). ok, just checked Im not really that traceable. well anyway, whoever sent it will you please own up so I can thank you properly with an Elsie type smoochy xx


And finally I just wanted to scream my head off at the package I got from Charmed Cards and Crafts who have asked me to whip some stuff up with a grand package of all grand packages with stuff I would NEVER buy. But paying close attention to the stuff I got, I will never let my BG snobbery impair my judgement ever again - thanks karen, you have restored my faith in this line of products xx

31 comments:

Kate said...

Have everything crossed for you and Belle, how quickly are they going to get on and look into this not so new heart issue?

Seren said...

Good Morning! I just read your blog about Belle and I wanted to let you know that you are all in my thoughts and in my prayers. I come to your blog daily not only to enjoy your freebies but to see your wonderful photos and to read about Belle. She is a BEAUTIFUL little girl with a smile that warms hearts. As a mother and a grandmother, I understand your worries and concerns. My grandaughter was born with spina bifida...a mild case, which is a great blessing. But, it's still been a long road already and she's only 2. I guess it doesn't matter which side of the world doctors are on, they can all be asses at times. We have had a few ourselves. They say that God never gives you what you can't handle and I have found this to be true. Anyway, I just wanted you to know that you're not alone and Belle is extremely lucky to have you as her mother. Don't despair. You and she will get through this with all the courage and grace that you have already shown and then be ready to take on whatever life hands out once again. Blessings always, Seren

Anonymous said...

Kirsty.
I have aheart murmur due to a
funny valve i think.
It has never caused me any problems- though I had to be monitored when giving birth to my first child just in case.
Heart murmurs don't have to be big issues and I pray this is the case for Belle.
Love Rachel C

Anonymous said...

oh no! damn it(soory) but this isn't fair at all, why Belle, Why Belle again. Thinking lots about you and her and sending you all the love and strenght you can handle, all the way from Holland. Big kiss, Corinnexxx

Jo said...

My Nan lived her entire life with a heart murmur - it never slowed her down, and she was really active.

Hope you and Ellie are ok.
x

bonnette said...

Oh dear roomy... I am so sorry to hear (read) all this sadness in your life! I know your positive spirit will carry you through any struggle but sometimes spirit gets very challenged...
Please feel I am thinking of the 3 of you!
Hugzzz

Rachael said...

My friends older sister had a heart murmur and never had to have anything done about it. She was very thin but other than that nothing was obvious she is now 40, married and has children. It's funny but the first time I saw a picture of Belle she reminded me of this person. Try not to worry too much as it could easily turn out to be nothing. Fingers crossed for Belle and for you on Monday. Take Care

Rachael said...

Sorry forgot to mention that my friends sister did have very blue lips as a child.

Steph in Indiana, USA said...

My twins were born at 26 wks and both had heart murmurs. Theirs was from open PDA valves. But when they told us about the murmurs they insisted to us that there are MANY kids who have heart murmurs that are very minor.

That being said, I can't even begin to imagine the anger you're going through with the NHS. The patronizing way you've been dealt with by them is enough to make me want to hop the pond and go kung fu someone.... and I don't even really know you.

Hang in there. I hope that they get to the bottom of it so that you all can decide what the next best step is for your little lady.

Anonymous said...

Kirsty, go for that book. you really have had to put up with some crap from the paediatricians you have seen. I was there when Dr Stanton told you "what you see is what you get - go home and get on with it". I have never forgotten that - and that was before Ellie was three years old!!!!
Also one Doctor refusing to even look at Ellies deformed feet and when I took Ellies shoes off he actually turned his face to the wall!!. He was reported for that but nothing came from it. That was aged 4. Oh lovie you could write a tome never mind a book!
Will be waiting with baited breath for the outcome of this new episode. I feel for you and with you.
Love hugs (and a few new tears)

Mam x x x x x

maz said...

Oh Kirsty it never rains but it pours for you, Mark and Belle. My (fortunately apparently robust) heart goes out to you all. Wish I could do something to help. (Cake?) All I can do is keep you in my thoughts and hope the positive vibes wing their way up the M1 to you somehow.xxx

Anonymous said...

You know you helped me to realize something today and I want to thank you. I have been feeling down this past week. Chances are pretty good that I am going to be losing my job and I am having fits with my teenage daughter. After reading all the things you are going through, mine seemed so trivial. Good luck to you and your family. I cannot imagine what it is like for all of you. You are in my prayers.

manicstamper said...

Just read this and couldn't leave without sending huge hugs to you all after such an awful day.

Sheila
xxx

SuzyB said...

Oh poppet. What a plop day for you. Betty had a heart murmur when she was a wee nipper - I was told it was very common and was nothing to worry about. I hope with all my heart that's what you'll eventually be told xx

Polly said...

Oh my sweetie. What a time of late...
No words other than, i'm thinking of you and your little girl! I can fully understand the uselessness sometimes of the 'system'.
xxx

debby4000 said...

Sending hugs, can't help with any info on heart murmurs, but I'm with you that our NHS sucks.

Anna said...

My 3 year old daughter has a heart murmur when she is poorly. Undetectable the rest of the time. She suffers no ill effects from it.
Come and see for yourself next time you're visiting your mum and dad in Leeds!

Sam said...

sending you all BIG hugs kiddo xx

Bobs said...

It's not fair, is it?

You get so many genuinely evil people who live long and healthy lives when they really don't deserve them, then you get the beautiful people like Belle, who go through all this stuff.

Not fair.

My youngest granddaughter had a wee heart murmur when she was born and although it eventually cleared up by itself, the doctors were very optimistic and said that most people who live with murmurs are just fine.

Stay strong, Kirsty. And don't take any crap from those doctors.

xxx

Jenga said...

Oh Kirsty not more! Hugs for both you and Belle. No advice to offer - just some positive vibes xxx

Jen said...

I, too, hope with all MY heart that this is just a minor blip. I was told I had a murmur as a (very robust) teenager, but nothing was ever done about it. I certainly don't have any problems as far as I know. But I cannot belIEVE that cardiologist!!!! Well I can, but you know what I mean. I've worked for 7 years in the NHS and I know there are some arrogant b@st*rds out there, but luckily not the ones I worked with. That cardiologist should be struck OFF and if I knew his name I'd bloody well shop him to the authorities myself. Big huge healing hugs to La Belle in her current poorliness, and to you and Mark too. I'm coming to see you in the New Year, by the way, cos I have some monies...... :)

Karen said...

Kirsty I have had a heart murmur since contracting rheumatic fever as a young teenager. I have been monitored throughout my life and need antibiotic cover when having operations or dental treatment as a precaution. I suffered no ill effects as I grew up so try not to worry, I know it's difficult as a mum but a heart murmur sound far worse than it is. Lots of love to you and your sweet daughter.
Oh and I told you that you would like the stash I sent you :o) Look forward to seeing your creations x

Anonymous said...

Hi Kirsty
My son has an aortic stenosis - one type of heart murmur - I think there are many. He is eleven and had to have echos' and ECG's at 6months, a year, then at two, we now only go once every three years (touch wood that stays the same). The tests are OK, just a pain on top of his orthotics, OT, visual stress, psychologist etc. His murmur does not affect his life at all, but he has to have a big does of antibiotics before dental treatment, incl scale and polish, or even very minor surgery because there is a much higher chance of any infection "getting stuck" in his heart. So whilst his heart is no big deal I am glad we know.

On doctors and their comments, my son's twin died within an hour of them being born and all his medical records have that he is a twin on the front page, but no-one sees fit to record that his brother is desceased, even though it must have happened before anyone put pen to paper - so even now I am asked how his twin is getting on or where his twin is. For a caring profession they can be mighty insensitive.
Hope you and Belle get good news at the cardio.

D@nielle said...

It just amazes me every time how docters can be, even though I know the stories. Belle is lucky to have such great parents who fight, love & care for her like you do !

Muma said...

Dear Kirsty

I pop on to your blog every now and again just to look at your wonderful photos. How I adore those photos and if I still lived in the UK I'd have already had you take shots of my little girl if you could get her to leave the camera alone long enough.

I had to reply to this post though, when I was pregnant with Amy I was diagnosed with a heart murmur due to the extra blood flowing through me. It caused me no trouble at all and apparently disappeared after I had Amy. During my pregnancy the only time it was mentioned was my 1st visit and after that they didn't even say anything else about it. As many have said heart murmurs sound much worse than they are. I hope this and what others have said lightens the weight on your shoulders a little, you carry enough as it is. I'm going to pop in more often as I miss the British humour that comes over in your posts. All those familiar words. Even with all that you have to deal with you find time to make me and probably many other giggle.

Thanks and many blessings sent your way.

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重庆化粪池疏通干净了,街道大家生活快乐.
重庆环保袋环保又易分解.
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石锅石锅鱼石锅这个味道巴适.
高隔断重庆高隔断让你的房间变的多样化.
德国慧鱼让你的建筑更加稳定,重庆建筑加固让你的房子住的安心.
重庆吸塑让你的建材色泽更加亮丽
重庆办公家具让你上班安心舒适.
重庆音响让你享受音乐的真谛.
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重庆广告公司 重庆广告公司 LED电子显示屏
餐饮加盟 重庆特色餐饮……去尝尝吧
重庆名小吃重庆特色小吃……味道巴适.
重庆疏通疏通之后……舒服啊 ……
重庆下水道疏通 下雨天不愁了
重庆建筑资质代办一证在手,胜券在握
重庆交通设施 不堵车,才是硬道理
吸尘式墙面砂光机 哇……真是光滑
重庆机械设备回收环境环保
锅炉 这个冬天不太冷
打标机 知道如来佛吗?知道他额头上的东东吗?哼,我打出来的
活动房重庆活动房……想在哪睡都行
重庆全钢制多媒体讲台货到付款
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重庆家电维修减少你搬家电维修的麻烦,包送的哦.
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重庆广告制作重庆广告制作
重庆周转箱重庆周转箱
重庆火锅 重庆特色餐饮……去尝尝吧
重庆疏通机重庆疏通机
真空机真空机 重庆喷码机
重庆机顶盒点歌机让你在家里享受KTV的待遇.
重庆别墅设计让你的别墅上一个档次
重庆喷漆加工让你的产品有新一般的感觉.
重庆金属加工厂金属质感很好哦.
蜡烛机制作出的蜡烛,又长质量又好.
重庆搬家公司减少你搬家的麻烦
重庆搬家公司帮你搬家方便快捷.
重庆周转箱让你的东西不够放哦.
重庆墙体广告让你的公司不想出名都不行.
游戏培训让你成为游戏中的boss.