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.
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 Only when I got home half an hour later, Id discovered that my ventolin was 3 years out of date but took it anyway.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.