Wednesday, July 26, 2006
Wednesday, July 26, 2006
I finally managed to get hold of the MRI desk at the Children's Hospital to find out when Isla's MRI will be performed - October 5th! Not too far away. We're meant to wait until the November Neuro Clinic at Campbelltown Hospital to find out the results, but I think we'll see Dr A privately at his rooms to get the results. I've had enough waiting.
Speaking of waiting, still waiting to hear back from the Physio's at the hospital re: serial casting. I'm told it would be in the next two weeks, but every time I call her to make a booking she's in a Clinic and calls back when I'm at work! I've made friend's with a few Mum's whose kid's have had plaster, so I'm sort of prepared for what we'll go through, but it's still going to be rough on all involved.
Still having a hard time with the walking, lost a little confidence this week after slipping while pulling herself up on the table. Gave herself an awful bruise under her left eye (which in turn gave her a black eye) so she's not too keen on standing near anything lately.
Still searching for the right type of walker/push toy to help her get moving. At the moment, Isla is content to knee-walk behind empty boxes.
Must have cried a million tears this week for little Isla and what the future holds for her. It's hardest when I see other little one's walking around (sepecially learning to walk) it all comes so easily, yet my little Darling can't do it - and it hurts. It makes me angry, it makes me hurt, a pain unlike anything I've ever known. I know it's a part of life (for other children at least) but I think I'll just have to distance myself from it all - at least until I have a clearer idea at what Isla's future will entail..
Isla has discovered her voice! She can now say: Mum, Dad, Nana, Pop Pop, ball, Tigger, Isla, uh-oh, sit, yay, yum, hiss (for snake), baa (for sheep), moo (for Nanny & Poppy's dog), ta (for thank-you), yep, no, pretty (or preeeeeeeeeeeeeeeety LOL) and hi! Clever little poppet!
Christmas & Birthday presents this year will be a challenge I think. I'm thinking maybe a rocking horse for her, but I'm not too sure how she'll go with her balance. Hopefully Isla will be making the transition to a big girls bed around Christmas time, so maybe we'll put in a request for bed linen etc.
^^^^That's from Isla^^^^who thinks she's pretty clever being able to reach the keyboard!!
Isla has started whistling too. It's just the cutest thing!
Big hugs to everyone
Tuesday, July 11, 2006
Tuesday, July 11, 2006 Our Latest Physio Update. Isla performed wonderfully, Michael was very pleased with her hand movements, they were a tad jerky before, but she was grabbing toys with ease today, so he was very pleased!
Her new boots are fantastic, Isla was standing flat footed (although a little stooped) while playing, so again, Michael was very pleased!!
We're going to the next Botox Clinic on September 20th, just waiting for an actual time now. Michael is going to contact the Physio's at the hospital to get us in for the plasters before we have the Clinic, so we can see whether they are beneficial for her or not.
Our funding for the AFO's has been lodged, but we will probably have at least a 12 month wait on that. Not sure when exactly we'll be getting them, I think we're trying casting first and if that fails, we'll move on to the AFO's- in the meantime, the boots are doing a fantastic job in pulling her feet flat. All in all, we're doing really well.
Michael has noticed a definite improvement in Isla in all areas. He is particularly pleased with her speech (now says Mum, Dad, Nana, Pa, Pretty, Tigger, Yep and No) but we're still going to see the Speechie at the Multidisc which is at the end of August - very exciting! In Michael's words, we've done a "fantastic job with her" which is so nice to hear. Michael said today that these next six months before Isla turns 2 are VERY important as we have to try really hard to keep her progressing so that she doesn't become frustrated with not being able to walk like most children of her age.
I'm still a tad overwhelmed by everything, I don't think that I'll ever really be able to accept Isla's CP. I don't really think that anyone really understands what it is we're going through, all they see is her smiling face and it's easy to forget that she has a problem. The tone won't ever disappear, she'll have it for her entire life, it's just a matter of helping her deal with it the best she can so that she has all the opportunities in life.
Next step - track down Dr A and find out when in October our MRI is, then book into his November Clinic at C'town, and then back to see Michael in 1 months time!!