In other news
For sports fans out there, just go and be outraged over here. Devastating expose on Rugby League (as if we didn't know) by Four Corners tonight. As one Twitterer said tonight, what sport has to teach their players how not to rape women.
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I've been in touch with The Spastic Centre (OH how I wish they'd change their name, isn't it dreadful) about accessing some services for Oscar. I did this when he was a pre-schooler but was informed he was 'too good' to qualify for any support. Hence why it's taken about six years to go back. In fact, I only did go back because our CP specialist said that I should.
So - we're on the wait list (9 months) for speech therapy. That actually works quite well in terms of determining the need for auxilary speech devices, trialling them then putting in funding requests for one for use at (suck in air here) h.i.g.h.s.c.h.o.o.l.
We're on the wait list (4 months) for physio. However the physio might decide to leave it until closer to the surgery. Yeah, the 's' word. More on that in a minute.
They have a recreation therapist and she is going to provide me with a range of options/clubs/ideas etc for activities for Oscar so he can stop driving us (and yes, probably himself) insane at home doing very little. We've been playing phone tag for a week.
They also have a hydrotherapy pool and stroke correction classes for children of Oscar's age. It was becoming an issue for me - and I'm guessing him - at the place we were having swimming lessons as he was staying in a particular group getting older while all the other kids were progressing nicely and were always a lot younger. It was also costing us around $180 a t.e.r.m. We went for an assessment at the pool last week and this week he'll go into the group - 2 to 6 kids of his age, three therapists in the water with them for 45 minutes. It's nice and quiet, huge change room area for him to get ready etc and oh yes, it's F.R.E.E.
Next year when he turns 12 he can use their gym for free.
They also have a dental clinic who can refer him to the dental hospital to get his braces put on (under a general) - which would also be f.r.e.e. (Although granted the waitlist will probably see him getting them just in time for his 30th birthday)
So yes, it has all been very positive - in that depressing special needs kind of way.
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We also had an appointment at the hospital with our CP specialist and the peadiatric orthopeadic surgeon as he hadn't seen Oscar for about 2-3 years and his left foot was - in my and in our specialist's - getting less flexible.
And - oh what a surprise - surgery is required. This we always knew - but I kinda had it in my head it would be when he was 13 or 14, not THIS YEAR. Well, early next year probably.
Basically they'll cut tendon from his leg here and put it in his foot there, and remove some tendon from over there and put it on his foot around here, and then they'll cut around his ankle and that was when I fell down dead. No not really, it wasn't anything I didn't already know but once you're hearing the word 'sawing' and 'bone' and it's about your child you tend to feel a bit hurly.
It's going to involve six weeks in a cast with no weight bearing whatsoever. Hi, can you just fill this order for jumbo valium now?
Apparently the Spastic Centre will be able to help us with pre and post-op support, rehab and all the 'stuff' like putting in ramps in the house etc. to get him around.
Oh just take me out to the back paddock and shoot me dead now.
It's going to be absolutely hell. He will be traumatised to a point I don't think we would have witnessed since he was a neonate.
I'm just giving you all a heads up now. Get ready to assume the crash position.
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Mum has had every test under the sun, seen a new gastroenterologist and is the proud recipient of the all clear. Except for the fact she still has chronic dioarrhea and is now weighing in under 60kgs. The last time I weighed that I was N.I.N.E. years old. Crikey.
Anyway, we're saying our thanks that it's not cancer or some other dreadful ailment but still it is a concern there is no answer.
This new specialist seems like a good egg so there is a plan to get to the bottom (hahaha- bottom - geddit!) of it.
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I bought some new clothes last week even though it wasn't in the budget but there was 30% off everything at Katies and Target. It has made me feel better, even if some of it was in a size getting close to triple digits.
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We've been really unhappy with Jasper's kindy - that they're lacklustre, that they don't even acknowledge Jasper when he arrives, I've seen the staff use not really appropriate behaviour responses, blah blah blah. I talked to the director about it last week and it is seriously like we're at a whole different pre-school. Today I got a full rundown of his day. Their morning greeting is like the arrival of the queen of Sheba, but get this - Jasper is actually talking about his day there. Let's see if they keep it up.
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Today I spent about s.i.x. hours sorting and storing all the boys clothes - and then rearranging the bigger boys bedroom because you see, it turns out we don't have two bigger boys, we have three. Jasper has decided he is a bigger boy now and 'Leelix and Ogga are my fwiends' and two weeks ago announced 'I'm not sleeping in your bed anymore, I'm sleeping in with the bigger boys.' And so he did. On a mattress on the floor. So today we re-bunked the bunk beds, set up the other bedhead and now, Grover has his own room.
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More camping stories to come.
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14 comments:
Good news for the Ogga Boy (mostly, at least).
x.
xxooxx
A few years ago, my daughter almost broke her leg. This resulted in crutches and no weight bearing on that leg. The next day, it took about an hour to get her down a flight of stairs. We all needed a nap after that.
And your mum, you and she have probably already researched this, but if not, google "lactose intolerance" just in case.
I'm sorry but the thought of surgery on Oscar kind of outweighs all the good stuff (six weeks feck!)...
Reading about Jasper helped though!
Oh dear, what a lot to worry about. Glad you at least had the joy of shopping somewhere in there.
it wasn't anything I didn't already know but once you're hearing the word 'sawing' and 'bone' and it's about your child you tend to feel a bit hurly....
Seriously - from the woman who counseled you to quit your job: does the hospital have a "child life specialist" to speak to you, to help you help Oscar and you through it all? I've found them mostly helpful.
bloody hell girl..you should have put a warning on this post...telling us to stock up on stiff drinks BEFORE reading.........
oh my..........well thats a hell of a lot to take in.......
Glad your boy can get some help but its awful that he needs them.....
hugs hugs hugs
I read this JUST after I woke up. I was complaining last night about some medical blah blah for myself. I TAKE THAT BACK!
W.O.W.
Paola
Oh man, hugs from me to all of you but a big boy style pat on the back for Jasper.
No dairy? How long have you been feeling like that? hugs.
Souds like you are doing wonderful things for your boys...on all fronts. You are looking after each one's needs brilliantly. What I mean to say is that you should give yourself a HUGE pat on the back and realise how AWESOME you are.
P.S. But the very best thing is that you treated yourself to some new clothes. New clothes can make almost anything better, in my humble opinion.
P.P.S. Dairy intolerance? WTF??
P.P.P.S. I just swore in your commentbox.
Oh dear god.
I can't even think about the surgery, can't even CONTEMPLATE IT, but remind me to tell you about the boy and the muscle laxity around his mouth and how no one can understand a word he says and yet the school said he did not qualify for speech services and our insurance refused to pay for private therapy. OH LOOK, I JUST TOLD YOU.
And they still don't know what's wrong with my dad, either! WTF? He is still losing weight and can't eat without pain and just like your mum, they've done a MILLION tests and told us it's not cancer, which is a comfort but OMG JUST FIX IT THEN.
I'm not sure I can HANDLE another camping story on top of all this.
Surgery?
Six weeks?
Oof.
xx
Your sons are very lucky having a Mum who will advocate for their best interests.
I am with you on renaming the Spastic Centres - well overdue.
I would be more than happy to write protest letters to the sponsors of The Footy Show and the Rugby League - but for the life of me I can't bring myself to actually watch that rubbish - but if anyone has a list I would love to have a copy.
and here I am feeling sorry for myself with a dose of the flu...
you ARE a MARVELOUS WOMAN..and mum
all my best wishes for you and your family
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