but I haven't had a blow out about the frustration behind diagnosing Ellie for a loooooong while because, quite frankly, I'm sick of hearing myself going mad. Its a relief not to have to write about it but often I find it helps when I'm feeling sucker punched.
Things have been ticking along with Specialists visits and recent tests for vitamin d deficiency, bladder and kidney dysfunction. Ellie thought the bladder and kidney scan was cool but the Vit D test? She hated having her bloods done with a passion. The hospital insist on drawing it twice a year, much to her disdain. And every time the results are finalised, we get a letter back from the doctors with new information on it that hasn't even been discussed with us. Namely Osteoporosis and more recently Myokymia - with a slight mention that her scoliosis is progressive and currently angles at 20%. First off, I didn't know she had Osteoporosis and although I do know she suffers with muscle twitches (termed as Myokymia) it was all news to me on the diagnosis! I could scream, I really could.
We have also been waiting for physiotherapy for 30 months now and the other week we got an appointment through. But the head physio at the session suggested that Ellie take up Pilates. No, they did not offer her NHS physio but suggested a "paid for by me" regime that doesn't necessarily cater for under 16's as it is. Can you see why Im all zombie eyed and a little crazy like?!!!!
Ellies weight is slowly but surely going on between growth spurts and she currently weighs 45lbs and stands at 134cm. She is on supplements to bulk her out but they seem to being going straight through her, just like her food does. And she does pack it away, that little mite. Eats like a King and can't bulk out. Unlike her mother!
There has also been a breakthrough with her mental abilities and we are waiting for an appointment with CAHMS. There are signs that indicate that Ellie has Aspergers Syndrome but Im leaning on the thought that she has a mild form of Autism. Either way, we shall find out soon enough.
She still needs the use of her wheelchair which is a great comfort to her. Although I must point out that the other week, when we went to New Brighton and my blog photos of Ellie did not show that she was in her chair?? An anonymous comment was left on my blog from a rather sarcastic meany individual who exclaimed how wonderful it was that she no longer needed it. Let me remind some individuals that just because a child does not need a wheelchair on a beach (which is impossible to propel) doesn't mean she is indeed cured of her walking issues. My husband and I have great use of our arms and shoulders to carry her in/on. Its bad enough she gets judged when she is in it let alone out of it, thank you very much.
So now I have to wait until next June to discuss the Osteo and Myokymia and also talk about any solutions for the scoliosis. NEXT JUNE? Good grief, that's such a long time to have ten minutes with the man you put your trust in :(
Rant over until at least June 2011 :)
Thanks for listening x