We had some not so happy news this week. Steph had an eye appointment and we already knew that she had limited field of vision on the right eye but we've just found out that she also has limited vision on the left eye now as well.
They also want her to go for a brain scan to make sure that this is noting new, that its originated from when she was born and when the cererbral palsy was caused.
Now being that we live in Somerset we have to travel 25 miles to the hospital they want this to happen but at this hospital they dont have the facilities to put a child under GA it required, so if Steph can't lay still during the scan then its a trip to another hospital 35 miles away in Bristol where they will put her out. The problem we have is that Steph suffers with spasms and she cant control them, they get worse when she's afraid, nervous, excited etc so how the hell do they expect her to lay still. How am I going to get her to do it twice if the first one doesnt work when she knows what will be coming. I've had an MRI before and so has Steph two best friends, Matthew and Jack, who are both special young lads, and we can sort of tell her what to expect but we dont want to scare her.
We were waiting now for the envelope to drop onto the mat to let us know when the appointment will be, I dont think that I will tell her right away, I think that I will leave it until a couple of days before so that she doesnt work herself up but then again I dont think I will not be able to show how scared I am going to be.
But we've been through a hell of a year so far, with the turning part coming now, and we will get through thisl
Sorry for being so long.
Ann, Steve, Steph and Kimmy
____________ Kimmy you will always be our superstar, we love you
Keep your chin up chick.....it'll be ok....its just something which Steph has lived with and probably has never known what true sight is...shes very like Jack in the sense that she covers things up and adapts to the situation....
When she gets her glasses (and we want a picture) she'll be fine it'll probably open up a new world so to speak...and look you'll have to clean and dust more as she'll notice all new things (just kidding you ain't dirty!!!)
On a brighter note it could be worse...you could meet a bright spark like we have recently, who foolishly has advised Jacko he requires a white cane oh yes our boy is over the moon cos people will now realise that hes isn't rude he just can't see properly....but how we are going to manage a cane and a wheelchair beggars belief...so I have ordered knee pads,ankle pads and helmet for ME from argos....simon and sam are having ice hockey kits already for his first venture out!!!!
Seriously Ann I am sure that stephs sight has always been this way, and that its all linked to her Cerebral Palsy...just when you think things are running smoothly you get another kick in the teeth....but then these children are a gift and someone somewhere thought we could cope!!! I would like just 5 minutes with this person though
I so understand what this is like ann,
With patrick everytime we have thought we have found out all there is to know about the problems he has or may have in the future some one comes along to tell us that there is something new they want to look into,
whats worring is that the little things we dont worry so much about are becoming a worry as they have been left so long in the backround,
we are at present waiting to hear from the authopedics as to if he is going to need majour op on his tendens, also if the new othampologist will allow him to have lences his last woudnt & he wont wear glasses
its like everytime you sit down & breath some thing else comes up
& now that patrick is geting older he doesnt like drs as much & due to being non verbal its hard for him to show fear other than to scream & refuse to do what they are asking
I hope all goes well for Kimmie & all our spec ones
Mya was in a pants wetting frenzy but hey she's 3!
Cadan as usual took it all in his stride and so long as food was on offer 24/7 he diddnt care and he slept through most of it anyway!
We're awaiting an appointment with the surgeon about his hernia and another as he has VERY lazy bowels (i know not a nice discussion topic) and he screams and screams each time he goes! if he gets in the least way "bunged up" he is inconsolable for days! he's still not walking but the crawling is improving and he is still bearing some weight on his legs so were still living in hope that he doesnt have CP. He's also got to return for more hearing tests as he "failed" the last one. personally i think he just got bored lol! We're still waiting too for his next eye appointment to check his vision but i'm not overly worried about that either.
Some more good news though is that he seesm to be growing out of his dairy allergy! he can tolerate small amounts of foods that contain small amounts of dairy now! so the world has opened up in the ways of custard creams etc . He still cant manage much but hey! its a start!
HI Sally,
Reading your last post sounded so much like I was reading about my own at 3 right down to the bowel, hernia, hearing & site problems!
Now at 8 he still has to see lots of people but thankfully not so often,
what have we got coming up this yr
Kidney specialist, routine appointment
geneticist's, new one as moved last summer should be fun!
orthopedic surgeon that ones next week to see about the op he needs on his feet,
ophthalmology, fingers crossed hes old enough for lenses now as he wont keep glasses on!
Oh & not to forget his general pediatrician 4 times!!
OH & Christmas was totally chilled with a nice quiet time had by all !
Well our Christmas went OK. Steph missed the last 3 days of school with a really bad cold and she was suffering all Christmas and New Year in fact she has only really got over it within the last 3 days, but that never stopped her from opening her present.
Just before it Steph went for her MRI scan on her brain - she didnt like it one bit and I thought at one point that she just wouldnt go through with it. She was fine up until we got to the scan room and just as we sat down an old lady came out of the scan room 'fing and blinding' and saying that was the worst thing she has ever had in her life.....well that just made Steph go into one and although I kept saying that it was a didnt scan she just wouldnt listen. We went into the scan room she even picked the spice girls to listen too while the scan was going on. Her dad had said that if she went through with it then he would give her £10 well when she was freaking out I said to her remember that her dad was going to give her £10 well through all the tears she said I'll do it for £20 well with that we all laughed and I made her lay down and had to hold her hand all the way through it.
Well she managed it in the end and I so glad as the other option was to put her out but to do that it would have meant another trip to another hospital 35 miles away from where we live.
Were waiting for the results now, if nothing wrong then we just wait for the next appointment with the consultant in March otherwise they will contact me.
Well 2008 will be a big year for us as she moves up to Senior school in September and we have so much to get over before that happens - lots of meeting with the SENCO at new school and present school - lots of talks with physo etc but will get there - just like all of us we all just keep going and face the next hurdel then it comes.
Ann, Steve, Steph and Kimmy
____________ Kimmy you will always be our superstar, we love you
We have had probably the best christmas for ages.....no hospital admissions and no illness( may live to regret that!!!). Today Jack has gone for his respite and will be home on Monday from school...he was fine about going and apparently its cool!!!! how hes moved on in the last 2 years...no more tears and if he is up all night they can deal with it...
He goes to a unit that has 8 other children and its in Southwell, so not too far away and he just has a great time with his Care worker, when we left they were going on MSN to talk to a girl who is going in tomorrow and tonight they are going to the pub!!! (Jack is 13) tomorrow the pictures and Sunday goodness knows where.....
We have just been to Ikea to price up a wardrobe for Jack and seen a beauty for ourselves..so we are getting a treat also!!!! The boys usually come first but not today...
We have a neuro appointment at the end of January...meds need increasing again and then eyes 2 weeks later, but his sight will never improve and to be honest he copes so well people forget his sight is really poor. At the moment Jack is learning how to use a "white Cane" and he is so confident and loves the independence!! don't know how I'll feel when he goes out alone, but if he is happy then so are we...
We have been there with the ear test and eye tests and whilst they were correct with the eyes, there is nowt wrong with
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