Ladies Camera Club

3 Feb 2009

Doggy Cookies

Belle was fraught with horror at the mere thought of missing Food tech yesterday just in case something happened on her hozzy visit. These things were on her mind:

a. She always thinks she has to give blood (8 times out of ten, she does)
b. She might have to get undressed which she is not entirely happy about, even in front of female doctors
c. The session might over run which might mean missing her cookie class at food tech.

Well thankfully she didn't have to give blood, she didn't have to get undressed and the session did not overrun. And we were more perturbed about potentially being told to go home because the usual routine visit was just a quick hello, get weighed and measured and "see you in 6 months" (like always). The Doctor was such a sweetheart as she talked over my sudden coughing fit and all I managed to understand was that Ellie's case for growth hormone injections is being reviewed in the next 4 months. This is like, erm, a result?
Something concrete meaning somethings happening.
Heeeeeeeeeeeeeeee!
I was most surprised at this because one doctors says yes to them and one doctor says no. Apparently a child needs some bulk to withstand the side effects of the injections, something Ellie doesn't have. Belle could well do with growth hormones as being 4ft at 13 is not fun. She is far from the hitting the maturity level for her age and the growth hormones will help strengthen her up, give her some height and some peer group maturity. As I was trying to digest all of this rather welcoming news, my chest went into convulsions and I was choking on my spit. The doctor urged me straight away to go down to A&E as I was having an asthma attack? Now I only get asthma in the summer when the pollen is high. But today, I think the smells of the hospital chemicals brought it on so we left the discussion at "come back in 4 months for hormone injections" and I went down to A&E. It's a children's hospital and I was really bothered about that and as I got there it was over run with seriously injured children. I thought "bugger it" and head home. I knew the attack would subside as soon as I got into the fresh air. Only when I got home half an hour later, Id discovered that my ventolin was 3 years out of date but took it anyway. And hey presto, clear airways. My chest is still in agony, so Im off to the Doc s tomorrow to get fresh ventolin. Joyous.
Anyhow, since calming down and dealing with Ellies tears from this really frightening experience it seems that the hormone injections will be a year trial and Mark and I will have to administer the hormone injections everyday into Ellies leg. We have sat down with Ellie and although the thought of the odd injection or blood draw from time to time freaks her out, we explained that this will be a good thing for her. She is currently having quiet moments (eerily quiet moments) and looking at us with puppy dogs eyes. This is going to take time for her to come to terms with and lots of re-assurance. We have, for the sake of some very hateful readers of my blog, also sat down and asked her how she feels about me expressing our views and her journey through my blog (again, because she knows I do this but you know...you question yourself when people spurt out their ignorance about it). And for the record I would like to make it clear that Ellie does not have a problem with this.
There are many personal things in addition to what you read on my blog that Ellie has to deal with and Im very careful not to expose those for people to pick up and twist at their sickening delight. So my very mild thoughts you read here are just the tip of the iceberg and I urge you to please leave us alone when it comes to your misjudgments as we try and reach out to many other parents and carers who need that lifeline. Its not just scrap smackers who read this blog, there are gulf war veterans and families, Muscular Dystrophy groups and SWAN members too (Syndromes Without A Name). People who have a purpose and share experiences about their sick kids too and this is my soap box in which to do that.
I also want to invite any of you (anonymous or not) to ask any questions you may wish to know about Ellie, her condition, the fund raiser we did for her sponsored walk etc and if I can't answer them, Ellie will. She is happy to do this and hopefully our experiences may enlighten those with those undying questions. You can let rip, like the smack blog does and hopefully we can clear up any concerns that most of the smackers have without it being twisted into something more devious. No matter what I write about our daughters journey, too many people read far too deep into it and turn what is generally a positive passage into some weird notion that I write coded, unkind and evil judgements on other people. I do find, though, that if you like somebody you will read with a keen, non judging eye but if you have pre-conceptions of a negative nature about somebody, you will cast public aspersions before the true message reaches your thought process. So if you really want to know something, please ask. We have 13 years experience in our child's journey and know all there is to know about her. Obv.
On a plus note, Belle eventually got to take her food tech class and made chocolate chip cookies. Only she went one step further and fashioned each biccy into the shape of Eddy's head. Taking a bite of them was hard as I imagined noshing on Eddy's head for real. Belle seriously has a wicked sense of humour. The teacher applauded her ingenious as other kids in her class used heart and star cutter for their efforts. In some small delightful way, our daughter has the most sweetest side to her which makes up for her lack of development. She won't eat them as she says they are too cute. So you know where they ended up, don't you? Burp.
I hear most of the UK has had heavy snow these past few days whereas we had a light smatterill dusting amounting to one lousy inch. Im desperate to take Belle sledging and see her enjoy the joys of freezing half to death and then cosying up on the sofa later with coffees and bickies. I remember when I was 9 or 10 I contracted chill blaines from being out in the snow from 9 until dark and then coming in and warming my feet in front of the fire. Not that I encourage you all try it out but those fun days were worth the pain! I remember putting socks on, then a freezer bag on each foot, then another pair of socks before putting on my wellies to prevent getting said chill blaines but of course it was the fire that did it all along. Im not sure if, like scarlet fever, that chill blaines are a thing of the past. Must Wiki that.

I took the dog out tonight and most of the snow had cleared but it was wet and the little sod jumped up at me and got me all mucky yuck. I took my 10-20mm lens out to try and fall back in love with it and although I like these following pictures, I just can't get on with it.Its a Sigma 10-20mm Nikon fit if anyone wants to make an offer on it :) Anyway, he was filthy when we got back and after a good old mopping down, he fell asleep on his back and was zonked out for hours.

Ok, got a PC to hoover out. The dust in there is chronic and maybe the answer to why it keeps shutting down on me. I cant afford a new one and Ill be well cheesed off if I lose anything on there so Im going to back up on my external hardrive tonight, just in casevilles.

38 comments:

Patricia said...

Well for the record, I think you are an inspiration Kirsty. It's extremely difficult to do this mom job...spending 20 years or so completely devoted to your child and trying not to lose your mind in the process!
Who gives a rats ass what the haters think?! I applaud you!

becky said...

i love your blog, my question for you & ellie is when will you be in the US again?? when you come, i hope you can come to st. louis -- i will take you all over and you can see our zoo & museums & everything! i think you would have a ton of fun!

becky

Anonymous said...

I can't believe people are mean about you and Ellie. I hope you can ignore them.... Yours is the first thing I read every morning - and how disappointing if you haven't updated!! You inspire me - craftwise as well as personally - my son also has problems and I only have to read your blog to remind me he needs me to take care of him.
Hope you find enough snow to go sledging? :-))
HeyJude!

Jo Austin said...

oh Balls to 'em i say. I was always taught if you had nothing nice to say, then don't say anything at all.. and i still applaud that.

I love your blog, I love the way you talk about life, and as far as Ellie is concerned, she's one cute ass little girly who's got a sensible head on her shoulders!

Don't let the buggers get ya down.. all the positive comments far outweigh the bad, so stick with it lass, i know you can!

love n hugs..
Jo xx

Andrea said...

I can't believe that anyone could be horrible about your blog and Ellie, I read every day and you are truly inspirational, so positive in the face of adversity. Stick 2 fingers up to the mean people who have said terrible things to you, and as you say, Ellie is in agreement with what you say, she is old enough now to voice her opinion. So good on her, she's a great girl..Andrea xxxx

Kerry said...

Those cookies are adorable.

I think as far as the treatment is concerned it is a case of being cruel to be kind. Anybody that can't get their head around that and would even think of leaving hurtful comments does not deserve the right to freedom of speech.

We had a bit more snow across the pennines. It was OK on the first day but not anymore. The back yard is like an ice rink, the dogs are more interested in breaking up the ice and eating it than the real purpose they are supposed to be outside for and the streets are downright dangerous with all the black ice.

Rosie (Freycob) said...

Hey bird! You and Mark are Ellie's parents. The decision is YOURS to take along side HER thoughts and wishes. It is NOT for general public debate WHAT you do, WHEN you do it or HOW you do it.

You both know your daughter better than anyone else in the world. You see her happy days, her sad days and her downright distraught days.

Follow your heart. Take your lead from Ellie. And remember..... you act out of love for your daughter.

Who knows.... somemone out there just might chance upon your blog who is / has gone through exactly the same as you now experience and may hold the key. Don't stop just because of a handful of nasty comments. Emotions bottled up are not healthy. It helps to get things out, whether that be the spoken or the written word.

Just have to add here to those with the nasty comments... I never see them putting Mark down in this parenting partnership, only you. Me thinks it sounds a very personal vendetta!!!!!

{{hugs}}

Paul B said...

Love your blog Kirsty and have never seen any subject which people could object too. If anything, it let's me appreciate the importance of gratitude in my own life. Your strength & Ellie's is an inspiration. And Ellie if you read these posts - you rock babe!

As for the smack bloggers - I see red everytime I hear about them. I believe in the right to freedom of speech. It's important. But if you have that freedom, you should use it with respect and responsibility. You say yourself that you choose what to reveal in your blog and what to keep offline. You are free to say what you like but use that freedom responsibly. Those who smack blog abuse freedom of speech and believe that just because they're free to say what they like, that they should say what they like. They choose not to think of the consequences of their words. Sorry, I'm getting into a rant. They do that to me haha. My keyboard will break if I bash it any harder.

Huge hug sent to you all

Paul x

Sue Abbott said...

I read your blog daily kirsty, although this is the first comment, not because I don't want to but lack of time in the past has made it difficult. I met you a few years ago at the wonderful Dyan's weekend, and I can tell you now, your love for Ellie shone through in our conversations. I read your blog because IT IS REAL, INTERESTING, HONEST and HOMOROUS!!!!!!!!!!!! Keep doing everything you are doing, it's great, and I hope now I have more time I am lucky enough to meet up with you again at one of the workshops in Harrogate. Love and hugs, Sue xxx

Katherine said...

Kirsty - I have read your blog for sometime but have never commented before. I can't believe that there are some people out there who can be so cruel - however I do believe that they are a minority and the most of us love your work & snippets of life with your family - please keep on doing what you do! Katherine x

Anonymous said...

Just laughed out loud at Belles cookies! Daren't comment on the other stuff cos my language would be too foul!
All I will say is this, I read your blog daily and I love and admire what you have as a family- you are an inspiration.

Love n hugs
KarenRel
BlogStalker

Deanne said...

I think all the above comments have said what I would want to express. You inspire me in so many ways, I actually worry if I note that you havent blogged!
What I've personally found after becoming a parent, is how protective you become of your children, you love and adore them with no questions asked.
These people 'obviously' do not understand 'that'

huge hugs as always
xxxx

Jozza said...

Hey chick,

You keep blogging and forget the smackers cos they ain't worth it.

I'm in no doubt that you do what is best for Ellie.

xxx

PS. Those cookies are awesome!

Debo said...

Kirsty, I love reading your blog. Since I found it I check it every day, and I too am disappointed and concerned when you haven't updated it. I always laugh or cry when I read it and rant with you when you rant.
You sound like an incredibly strong family unit. Ellie is AMAZING! She is SO obviously the most important thing in the world to you, and just like any good mum and dad, you do what you think is best for her, knowing her better than anyone else does.
As for those who make horrible comments, well it says more about them than it does about you! They must be very unhappy/jealous/insecure otherwise they would not feel the need to say anything nasty. That is my experience of negative people. Therefore you should (try to) ignore them as their comments are worthless.But I know that is easier said than done.

Ooops! I seem to have written an essay!
Love and strength to you all x

Marie said...

Lovin' the Eddie cookies. Way too cute to eat (well, okay, maybe for a little while anyway, then I'd have to give in).

The growth hormone thing sounds scary, for you and for Elle, but if you can all keep your mind on the long term picture I'm sure the benefits will outweigh the sadness it causes now (although it's probably not so easy to see that when you're 13). {{{HUGS}}} to you all (including Eddie if he promises not to do any of his infamous lethal bottom burps ;)).

xMx

SueK said...

Like several others this is my first time I've commented. I read your blog daily and and like a lot of others worry that everything is ok when we don't hear from you. I hope you, Mark and Ellie (oops nearly forgot Eddie) take comfort and support from all your wellwishers, and ignore the cretinous creatures who try to bring you down.

Love Ellie's cookies and like her could not nibble off such cute little ears and noses.

Sue

naomi_m said...

Loving those doggie cookies. They are too cute. Ellie could come and bake some for me any day.
I do still get chill blaines but I don't think there as prevelant because the central heating is a bit more gentle than the harsh heat of a fire. KWIM
As for the injections, my dad hates needles almost as much as Ellie. He nearly passed out when I had one and asked for a general anaesthetic once just to escape one. Anyway, he just had to start giving himself an injection twice a day. I truly thought he wouldn't cope but three months on he's 'flying', the new meds work great and he knows that the benefits outweigh the needle. I know it's not the same because he's an adult but well........

Lisa Hemmings said...

Kirsty,
I love your blog.... don't EVER, EVER stop being you on it. You probabaly don't realise, just how many people love to read your very funny tales and all about the beautiful Belle.
I love the cookies (there must be a market somewhere for them!!)
You are an absolute inspiration....

Love Lisa xx

P.S Hmmmm... wonder where Belle gets her "wicked" sense of humour from?!!!

weewiccababe said...

I'm sad, but not surprised to hear that ignorant people feel the need to spout their ill-informed opinions at you. I've had the same in response to Willow and her condition. People think that because she has had the surgery she is now "back to normal" but they don't see the heartbreaking drama that we have to go through every second day with her bowel washouts that will continue for the forseeable future.
Just want to send you a big bosie, and dinna let the barstewards get you down.

Darcy said...

Loves you...nuthin else to say really.x

Tip Top said...

Bugger the idiots. They are not worth it.

And fab cookies hehehehe!!

Rach said...

It's a very sad world when you can't write what you want to write on your own blog without people being hateful. Just keep on ignoring the nasty poisonous witches and be yourself.
The question I would really like to ask you is how come your daughter brings home all her cookies to you when my 12 year old soon bought me home a box full of biscuit crumbs last week after his baking class!!!
And are you sure it is dust in your PC and not cookie crumbs???

Terrie B x said...

Hi `sweet cheeks`
*You are an Insiration*
Cant believe the shallow minded people...
If they havent anything nice to say then they should say nothing!!!!....
Belle has the most *loving* Mother,Father and family.... what choices you choose to take are entirley *your choices*
people should respect your wishes:)

`Belle` is the most beautiful well mannered pleasent girl one could ever know...

Obviously just what a lot of grown up *people* are lacking :(

I think I can only echo what everyone else is saying!!!!
I got my staple gun ready!!!!lol.

Those bisuits get A*** from me!!!
mmm `delicious`...
and I am sooo jelous we aint even got a snowflake here ......not one!!!nada....
little *winkie* spent the last couple of days in the Lakes with his Dad in...
`Sledge Heaven tho`:)Yaah!!!

Lots of loves to you all:)~X~

Jan said...

I read your blog often, comment almost never. Your Ellie is a beautiful precious gift from God - He made her just as she is and gave her to you and your husband because He knew that you would be the perfect parents for her and that you would make the best decisions for her. Remember that as you enjoy your precious daughter.

Rhonda.m said...

Belle - I LOVE your creativity with the cookies :) You are lucky to have such a good Mom! (just thought I would remind you of that, because I know my boys sometimes need a reminder..haha)

Jazzy1972 said...

Well done Kirsty a brilliant heartfelt write up. I could not believe what I read when a friend directed me to the smack blog. I am horrified at what they had to say. I would not let it touch you or Belle, you are a bright and talented woman with a great family and oh so adorable daughter who is having a tough time, I applaud and support you and can see that all you want is what is best for Belle. So you go girl, don't let it get you down and if you are doing anymore fundraising for Belle in the future I would be sure to donate, I would do exactly the same if it was my child. Tell Belle I agree the cookies were to cute to eat (although I would probably have been burping with you LOL) Jay xx

Sharon said...

I think Ellie could go into business with those biccies-they look fab. Love the blog - boo to all the people who have alternative views, which maybe they should keep to themselves! Yippee for kirstys blog x x x

No cottage Jet! said...

I just want to say that I love your blog and I have been reading it for over two years now. I only once left a comment but felt I need to do so now.

I just hope you won't ever stop blogging because of some cruel people who leave nasty comments, they are not worth it!!

Hugs,

Henriëtte KB

Kim said...

Well done Ellie..


Shove off hatefull readers, have you nothing better to do than be spitefull...

Kirsty you are an inspiration to us all, and if you wish to share your trails and tribulations on your blog, then you do so with pride, it is your space after all...
Kim x

LizzieG said...

Kirsty, I often read your blog. I think it's fab. I love to see your wonderful crafting and photography and it inspires me.
I also like to follow Ellie's progress. I felt privileged to contribute to her USA fund and still feel privileged to be allowed to share her story. I think she is a special young lady and you and Mark are very special parents.
You are the people who know Ellie best. You make sure you tell her the hows, whys and wherefores and you do your very best for her. I applaud you for your amazing efforts and achievements on her behalf. Please don't be disheartened by unpleasant and unfair remarks from those who do not understand. She is your daughter and you are doing a great job.
I wish all of you well and happy in 2009!
xx

Jo E said...

Kirsty, we may have only met twice but I know you have more warmth and love inside you than most people can even dream of. Some people never grow up from their school bully days. Ignore them and read the comments left here to get a more honest and balanced view of what people think of you.

Loves xx

Sarah xx said...

Lovin those cookies - dead ringer for Eddie! I couldn't bear to eat them either! Have tagged you on my blog as you are so fabulous! xx

Chris T said...

The thought of those nasty minded bloggers seems to have stirred up quite a few of us silent readers to comment. I don't understand them- very sad people.
Love your blog - you make me laugh & cry! Feel honoured to be able to share your journey - Thankyou:-)The cookies are wonderful - that's one bright little girl.

Anonymous said...

Just read 2 weeks of blogs(cos i went on my jollies to bloody newcastle, not gorgeous scarapheaven like you!)even tho its taken me about 30 mins to scroll, drool,then scroll some more....
whadda you care that some scroat disses you for"sharing too much"?
we all love it, love you,love your family,love your photos-long may you reign,chick!
Lulubelle xxxxxxxxxxx

cannycrafter said...

Don't go there and don't read it!!!! It just ain't worth it!!!! I never knew such things existed until you pointed it out! Why have they nothing better to do??? Nobody asks them to read your bolg. Personally I love to read it and it has inspired me!!!

Anonymous said...

hang the rest of the small minded people who live their lives in relative ease... if they have to deal with half the things you have done, they then would soon stop whining and whinging.Your a great mum who desparately wants the best for her children. if there were more like you who took ownership of their kids and an interest, no matter how dee, then maybe there would be a better set of people out there. dont give up, keep the energy going, you know there are those of us out there sending our love and wishes to you all. take inspiration and keep on going. love you
PBB xx

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