Ladies Camera Club

5 Oct 2009


I have literally just finished watching the you tube clip (below) and wanted to share it with you. It was sent to me by one of my twitter friends, Linby who sent it after reading my tweets of today. I knew what she meant by sending it but hell fire - it really turned on the tap works!

By the way, my tweets were related to the Hospital trip we had today. It was awful because I didn't get to hear what we thought would be important (ie what they are planning to do with her scoliosis and muscle issues) but instead we get told that Ellie has a weight issue.

Shit, no? Really?

Ellie has had weight issues since she was 3 months old! She has FOREVER been classed as failure to thrive and NOW they want to do something about it? Man, I have wept buckets both in hospital and on the way home and when mark came home and even woke myself up from sleeping from a sad dream tonight feeling so sad about the way this all gets served up.

So now 6 months of meal supplements and extra calories ensue. I mean, that kid eats like a real trooper and yet her weight gain is so poor. I have BEGGED Doctors in the past to deal with it but they said they needed to monitor the muscle issues first. But because all of her tests are fruitless both in her nerves and brain only NOW do they focus on the weight. Plus - the killer crunch is if there is no sufficient weight gain during this 6 months she has to have a gastric tube fitted direct to her stomach. Well at that point I almost passed out.

But come on.......I mean - they finally decide all this NOW? What happened to 13 years ago or time between then and now?

Ok ok ok ok ok ok - rather than bore you all to tears with any more and believe me I know its something that some readers will think "God, will you shut up moaning" (and no, I wont but Im sick of hearing myself think today let alone type) Im leaving you with this lovely, warm and endearing youtube clip that transports me from my hideous pity party and instead makes me feel all floaty light

Valuable stuff, yeah?
Please share with me any clips you might have seen too :)


Fairy Heaven said...

have just finished reading your blog and my heart absolutely goes out to you and yours tonight. Being a mum is so hard and no one ever prepares you for it...theres no manual, no how to, and possibly worst of all, no way on earth to take their place through the hard stuff no matter what it is and what you would give to be able to. Thinking of you all x

Sue Ramsay said...

Tears on both counts Kirsty. Hugs, love and light to you.

Amber said...

*HUGS* I'm sorry about the bad trip to the hospital!

Thank you a ton for sharing that video! I have a 3 year old little boy with autism and after a rough day with lots of worries about what the future holds, it was so nice to see that video.

Zoe said...

Kirsty, am so sorry to hear that the hospital visit didn't go the way you'd hoped. Can't imagine how tough it must be for you all, sending a stupidly ridiculous amount of love and hugs your way (((((XX)))))
Fab video clip, brought tears to my eyes. I work for a charity that runs communities for people with learning disabilities (L'Arche) so it was lovely to see.

Kerry said...

Awww bless. It really brings home how determined autistic kids can be about something they become obsessed with. Future star.

Hope the programme of treatment works well for Belle. xxx

Lynn said...

my heart goes out to you Kirsty. I know you must be frustrated to the hilt. sending good vibes your way.

Deanne said...

s**t man! for ellie and video, cant say much else xxx

Ruth said...

Ok ...I'm crying!! There will be a movie next!

As for Ellie....what do the Doctors know.....if it doesn't feel right and they decide on a tube you can fight I'm holding out that the special build up diet will work in the mean time.

But it must be so frustrating after all these years for them to go back to square one what happend about the vitamin deficiency idea last time? Did they get to the bottom of that?

Michelle said...

Oh Kirsty - I can just send you a hug, I am on a similar road, with a 15 month old baby who is tube fed but even this is not working well at the moment... Waited for the hosp apt. and again, it did not go the way I wanted, they tried to tell me all the problems are due to her being constipated!!!! Not that I know more than a professor, but CONSTIPATED!!!! So like your dilemma's, where do you go from here! Hugs and happy thoughts!!!

Pol said...

I hardly ever comment on your blog, but the video has me in floods. My 8 year old son is autistic, and I have pretty much given up any hope of him being able to play a team sport - I was so impressed by the reaction of the other student - of how supportive they were of Jason.

Sorry you had another rough appt with Belle - I really hope that the new treatment ideas help.

Jen said...

My darling, I'm so sorry it's the same old story with the medical professionals. I don't know how it must feel, but I know you love that girlie and that you are doing the best you can by her. We are rooting for you and I shall pray that the weight starts to pile on!! (her not you lol!). Feed her some lemon and slime Jaffas to start with ;) ( not trying to trivialise your pain, just trying to raise a smile). Hugs xxx

Rae said...

hey Kirsty!..



Linby said...

Kirsty - so glad you watched the vid and that others have liked it - had me in floods of tears but in a good way.Just thought it might help after yesterday
hugs to you all

jennifer said...

hey thanks for the video. our little man has just been diagnosed with autism and its great to see something positive for once. sending love hugs and prayers to wigan and hopefully some good news soon.xx

Lil' Ol' Me said...

Hugs for you Kirsty and your family. Sometimes I wonder if those medics should ever be allowed to make decisions. My 2 daughters had a genetics councelling meeting this week about their future (ie - having kids) I said they were too young for this info right now. It could scare them. I BEGGED them to leave it a couple of years. But apparently I am wrong and as they are 16 and 17 the hospital dont need to tell me anything about their care anymore! So I now have 2 girls devastated at what they heard...and whos here to help them through, calm them down, reassure them? Well, it anit the bloody consultant that dropped the bombshell is it? No she did the damage and moved on to the next victim. Arrgghh.
I hope Ellie puts on weight and that you get a sensible consultant soon.
Hugs again.

Sam said...

hugs and loads love to you and yours Kirsty.
didn't watch the vid (coz I'm at work and it won't let me! - saving that and the tears for home!)
I know it's easy for me to say, coz I can't imagine what you're going thru right now, but keep ya chin up hun!!!

Anonymous said...

Hi, sorry you are so sad and understandably so. Having had a lot to do with enteral feeding if you do need to *assist* your daughter [ who can be taught to be totally independent with a tube at a young age] with feeding through a tube you might find PINNT of value and a lot of support. I know its not what you want and nobody does but thousands have them and live totally normal and independent lifes without the need for nusring and medical care all the time as they learn what to do and bravely get on with life rather than the possible sadness of it all. See and also the oley foundation in the USA which is also great and many others around the world mdel their support networks on these two support organisations. Hope your daughter thrives on her new regime and starts to put on a lot of weight without the need for the tube.

stephanie howell said...

oh my friend WHERE have i been and how did i miss this. i'm so sorry. i love you. call me if you want to cry or talk or scream. i'm so proud of you and you are such a wonderful mommy. xo