Ladies Camera Club

14 Jul 2008

Its all or nothing in this house

Im home.
Dog went mental.
Loved it!
Then Ellie came home.
And she went mental.
Loved it!
Between being licked to death by Eddy the mad "I chew absolutely everything" dachshund and Belle getting in from School I opened a letter addressed to Mark and I.
It was from the Doctor (in Wigan) who told me in January that, with Belle - "what you see is what you get".
That drove me beserk.
Infact I almost had a bloody breakdown.
Anyway, this new letter (from the Doctor in Wigan) was in response to a heart appointment we had in Alderhey a few weeks back and even that appointment was in response to the excellent care we received in the US.
And this Doctor (in Wigan) now sends us an email and claims he thinks Ellie has symptoms of Ehlers-Danlos Syndrome Type 6.
So you can imagine that I run straight to the PC and look it up. And classic signs of this is a prolapsed mitric valve (which she has) and other stuff (which she has).
Now I don't actually think for sure she has it because, as you know, we have been fed a lot of bull over the last 12 years. But Im losing the ability to take my next breath because Im just about sick and fed up of it all.
I really am.
As I am typing now my eyes are just about to lose their vision through tears and Ive got that pain in my chest where it feels like a nuclear bomb has exploded and subsequently ripped out my heart.
You really would think I'd be jumping for joy, though, wouldn't you?
But I am not.
I just can't believe this doctor wrote us off in January and then, on the strength of the hard work the US doctors put into researching Ellies problems, he types a letter as nice as you like and mask himself as being the saviour to the whole story.
Am I wrong to think like this?
Perhaps 12 years of faffing about has just pushed me over the bloody edge.

No matter what.
Belle is Belle and we know and love her as our extraordinary little girl who fills us up with so much emotion and love. Its incredibly difficult to convey just the right words that would convince you of how much we adore that little creature. So regardless of whether she has a syndrome or not - that kid has been put on this earth for a reason and soon enough even you will understand that too.

13 comments:

Anonymous said...

hi sweetie, sorry for not posting for so long, but I did read it all and having a diagnose after 12 years is actually very sad. I do am happy that you finally have it, but it doesn't take away all the pain and hurt and frustration that has it all caused you for 12 years now does it?!

love you!

corinnexxx

Net said...

I know your super puppy has given you tons of licky kisses in the way that only a puppy can, likewise the cuddles from your lovely daughter.

Have a shoulder hon - then my ear - then go back and cuddle daughter and puppy. Now go and kick some ass!

Deanne said...

oh kirsty, i am thrilled for the information in the letter but i totally understand where you are coming from too with your frustration and upset.
Huge hugs to you, ellie and mark.
thinking of you xxxxx

Erika said...

Kirsty my heart breaks for you. That doctor deserves a bloody good smack on his over sized ego. Just as your beautiful girl has been gifted to you as a blessing, don't forget that you are a gift to her, and she is blessed to have a fierce and protective Mum who won't give up. We have been lucky to find a physician who will explain things to us, and the links between things for our daughter, and the ability to communicate in a caring an empathetic way is a skill lacking in many in the medical world. Sending you a huge hug.

Rosie (Freycob) said...

The cheeky bugger! Like he's the saviour!!!!! GRRRR!!!

Sending you big hugs hun, cuz you deserve them xxx

Julia Dunnit said...

Kirsty...you wouldn't be the loving Mum and sensitive caring soul that you are if you didn't have that reaction to this letter. 'Riding the back of the work done in the USA' was my first thought and I'm simply a concerned onlooker. As such, I see the love that she is surrounded with, and ultimately it's by this that she will measure her memories. Keep on girl, because you love her and because you can.
Julia (we met at the QVC thingy)

Cazzy said...

I can see why you are upset. Hang in there girl, someone at work keeps tellling me "don't let an a**hole rent space in your head".

Jo said...

I'd be angry too - another example of the s**t state of the NHS.

You've got so much on, and just found out today that Ruth's sports day has been moved to tomorrow, so think we'd better get together another time.

Will miss seeing you, just really bad timing at the moment.

Hugs

J xx

Jo said...

That'd be the 24th? The kids would love to come and see you (the Wii and Eddy would also be popular!). Are you sure it wuldn't be too much - the kids are a nightmare when they're together...

xx

Terrie B x said...

I can only echo what Julia Dunnit says......I truly feel for you right now...Hold you head up high...Kirsy...
Thinking of you all ...and
Sending a big (((Hug)))xxx

Hannah said...

They make you so mad don't they? I hope that you know and realise that you have a very special little girl and a wonderful bond shared between all of you 'up norf'!
You should just, as others have siad, hold your head up high and continue the wonderfully inspiring job you do so well xxxxxxx

fgeegf said...

看a片 ,成人夜色 ,小魔女自拍天堂 ,成人網站 情色論壇 ,視訊 ,影音分享 ,影音部落格 ,卡通影片 ,成人情色 ,色情聊天室 ,野外自拍 ,ut聊天室 ,aa的滿18歲影片 ,正妹強力版 ,3d美女圖 ,聊天室入口 ,性感沙灘3 ,成人文學 ,貼圖區 ,小弟弟貼影片 ,中部人聊天室 ,18禁漫畫 ,vlog電眼美女 ,躺伯虎聊天室 ,正妹照片 ,嘟嘟貼圖 ,av影片 ,小弟弟貼影片區 ,a片小說 ,080聊天室 ,a片免費看 ,正妹星球 ,真實自拍 ,看a片 ,免費小說 ,av女優貼圖 ,上班族聊天室 ,袍嘯小老鼠影片 ,美腿圖 ,免費aa片試看 ,杜蕾斯成人 ,a片線上免費看 ,電話交友 ,聊天室入口 ,女優盒子 ,小弟弟貼影片區 ,熟女人影片 ,999成人性站 ,美眉脫內衣遊戲 ,禁地成人 ,正妹強力版 ,癡漢論壇 ,彰化人聊天室 ,美女相簿 ,大家來找碴美女 ,情色自拍 ,波波情色貼圖 ,裸體美女 ,a38av383影音城 ,成人貼圖 ,18禁卡通 ,比基尼美女 ,熊貓成人貼 ,女同聊天室 ,台灣18成人網 ,qq 交友 ,

777成人區 ,黑澀會美眉無名 ,天心美女寫真集 ,熊貓貼圖 ,監獄兔影片 ,免費視訊聊天 ,ut男同志聊天室 ,成人交友 ,波波線上遊戲網美女拳 ,禁地論壇 ,a片觀賞 ,洪爺情色網 ,做愛自拍 ,性感影片 ,a片下載 ,辣手美眉 ,線上電影 ,美腿褲襪 ,美女圖片 ,美女做愛 ,av女優貼圖 ,0204貼圖區 ,1元視訊 ,sogo情色網首頁 ,美美情色 ,漫畫貼圖 ,卡通a片 ,線上漫畫 ,免費線上影片 ,忘年之交聊天室 ,彰化人聊天室二 ,gay片免費下載 ,嘟嘟成人網 ,av女優圖片 ,影音部落格 ,a片免費看 ,視訊交友90739 ,免費成人遊戲 ,援交友聊天室 ,美女圖庫 ,成人小遊戲 ,本土自拍天堂 ,情慾自拍 ,亞洲成人圖片區 ,交友啦咧聊天室 ,辣手美眉 ,美腿絲襪 ,熊貓情色 ,卡通影片 ,免費a片試看 ,聊天室交友 ,哈啦聊天室 ,網愛聊天室 ,性愛影片 ,aaaa片 ,殘酷的愛線上看 ,內衣模特兒寫真 ,女優 ,天天情色 ,a片網站 ,a片 ,

fgeegf said...

做愛的漫畫圖片, 情色電影分享區, 做愛ㄉ影片, 丁字褲美女寫真, 色美眉, 自拍俱樂部首頁, 日本偷自拍圖片, 色情做愛影片, 情色貼圖區, 八國聯軍情色網, 免費線上a片, 淫蕩女孩自拍, 美國a片, 都都成人站, 色情自拍, 本土自拍照片, 熊貓貼圖區, 色情影片, 5278影片網, 脫星寫真圖片, 粉喵聊天室, 金瓶梅18, sex888影片分享區, 1007視訊, 雙贏論壇, 爆爆爽a片免費看, 天堂私服論壇, 情色電影下載, 成人短片, 麗的線上情色小遊戲, 情色動畫免費下載, 日本女優, 小說論壇, 777成人區, showlive影音聊天網, 聊天室尋夢園, 義大利女星寫真集, 韓國a片, 熟女人妻援交, 0204成人, 性感內衣模特兒, 影片, 情色卡通, 85cc免費影城85cc, 本土自拍照片, 成人漫畫區, 18禁, 情人節阿性,

aaaa片, 免費聊天, 咆哮小老鼠影片分享區, 金瓶梅影片, av女優王國, 78論壇, 女同聊天室, 熟女貼圖, 1069壞朋友論壇gay, 淫蕩少女總部, 日本情色派, 平水相逢, 黑澀會美眉無名, 網路小說免費看, 999東洋成人, 免費視訊聊天, 情色電影分享區, 9k躺伯虎聊天室, 傑克論壇, 日本女星杉本彩寫真, 自拍電影免費下載, a片論壇, 情色短片試看, 素人自拍寫真, 免費成人影音, 彩虹自拍, 小魔女貼影片, 自拍裸體寫真, 禿頭俱樂部, 環球av影音城, 學生色情聊天室, 視訊美女, 辣妹情色圖, 性感卡通美女圖片, 影音, 情色照片 做愛, hilive tv , 忘年之交聊天室, 制服美女, 性感辣妹, ut 女同聊天室, 淫蕩自拍, 處女貼圖貼片區, 聊天ukiss tw, 亞亞成人館, 777成人, 秋瓷炫裸體寫真, 淫蕩天使貼圖, 十八禁成人影音, 禁地論壇, 洪爺淫蕩自拍, 秘書自拍圖片,