It has been a while since we updated over here. I know a lot of you link up via facebook but hi again to those of you who haven't been sucked into the whole social networking thing.
We've had a busy summer and then all the birthday's in October with two more this month. This is TG's favourite time of year ... all that cake!
The big news of course is that we are borrowing a walker until the 6th of November in which our girl can move herself forward independently. We were actually given the other one I blogged about by the local health service but Gracie's legs were scissoring and her feet were getting in the way preventing her moving forward. This other one has leg and ankle straps to stop that happening. Tomorrow we break the good news to the physio at hydro and ask for a replacement. All that sciatica and walking round the house for years has paid off and has been well worth it.
The next bit of news is that we have found a conductive education center 15 minutes away which is a branch of the Peto Institute in Hungary. It is a 'school' and therefore should be funded by the dept of education, but it isn't and we'd never heard of it, despite it being there 18 years. So we're going to have an interesting meeting later on this month which will probably end up in a tribunal. They only have one other pupil and one conductor who is also the principal which is shocking really as the dept of education would rather kids all sat in chairs and didn't give too much bother. We both go for one hour on Friday mornings and it is so incredibly exciting! The principal is a wonderful lady from Hungary and I knew as soon as she met Gracie, that she would be so good with her and so did Grace. The chairman is also a champion for kids with cp and has 30 years experience within the education board. He works tirelessly fundraising and fighting to keep the school (it's nothing like a school but that's the name of it) open. Wonderful people!
And a HUGE thank you to Neil at New life who raised £4000 for equipment and those who donated online. TG is now in receipt of a special tomato seating system, which is wonderful and such a nice relaxing change from her other chair. She is awaiting delivery of a sleek, slim stander and light weight folding buggy. Amazing charity!
Will update with photos soon.
Deb
My 8th Birthday
Last week we got back from our trip. We weren't able to get online with my laptop which was okay by me as I got to use it more :) Mum did use Dot's once but didn't do a big update as you can see, so here goes ...!
Here are some pics of my birthday. As usual, there were lots of balloons, pressies and tons of fun!
Here are some pics of my birthday. As usual, there were lots of balloons, pressies and tons of fun!
We stopped off for a toffee sundae on our way to the park
I make them sing Happy Birthday lots as it makes me laugh!
My News
I'm also trialling some different things ...
A walker. We didn't know that the physios here use them as nobody told us even though Mum had mentioned me stepping out with Mum or Dad holding me. I'd have really enjoyed it when I was little :/
... and I'm finally starting hydrotherapy this week so something else to slot into my schedule :) I love water so this is going to be just fab!
The visit to Dr Craig my cardiologist went really well. No leaky valves! They did such a great job looking after me down there. Mum says that him and Dr Casey are the nicest consultants in the world.
Wishing you all a wonderful spring holiday.
Love Gracie xx
This demo buggy was soooo lightweight and compact! Mum says she likes it a lot as you see me and not the chair - plus she will be able to lift it (light weight aluminium) into our car. Usually we have to take the heavy seat part off my inside chair and refit it onto an outdoor base. With our last car nothing fitted in the boot so dad had to dismantle the arms and head rest and then reassemble it all which was a real pain. This will be fab and I can't understand why all kids like me don't get given one!
April 2nd
Today, my new car seat finally arrived. We had been waiting for a fixing strap to come from Denmark. Here I am trying it out.
Thank you again to all my friends. We will be forever grateful for your love and support.
Gracie xx
THANK YOU ALL
'Thank you' doesn't somehow adequately express the gratitude we feel for the love, kindness and generosity we have experienced during this venture for 'Gracie'.
Today a wonderful family presented us with a cheque for £725.00. They took it upon themselves to raise funds to help our little girl and their friends, co workers and children gave liberally and lovingly. They wish to remain anonymous as it they feel it is of the Lord and that he should rightly get the glory. God has truly met our need in an amazing way and for that we are deeply moved, humbled and thankful. I never dreamt that less than three months after starting up this blog, I'd be ringing up the rep telling him to bring the car seat on over!
And here is what you all have achieved! This is the car seat - made by the Danish company R82 who supply all of Europe. They like most companies are costly but the stuff is robust and built to last. The basic chair part is retailing at £1964.00. The additional parts are: headrest £152.00, 5 point belt £76.27, foot board £132.00 and fixing strap £110.00. The total would normally cost £2397.00. The government do not supply this item to parents. Now here is the really neat part:
This year Europe brought out some new regulations. Last year's stock only meet three out of the four so R82 have a few ex demos knocking around that they can't sell as new. The rep has sourced one in the correct size and they are knocking £1000 off the chair price. We also don't need a new head support as the one in Gracie's R82 bike trailer is identical to the car seat one. So the total required is just over £1,200 which we now have!! There are other car seats retailing for around the same amount, but none are specifically manufactured to offer the level of support that is needed. TG has mixed cp, both athetoid and spastic quad. This one swings out to make it easier to place a child in, before swivelling round and clicking into place. The lateral support and wrap around headrest are crucial and reclined position will mean that she won't be continually having to try and hold her head up. The Panda seat is a variation of the seat in her Panda bike trailer we got a few years back and really works for her so I am delighted that she is getting this particular car seat. Nothing is impossible with God!
I will continue this little blog for updates and news and will post a picture of Miss T modelling her new car seat as soon as it arrives.
Yours gratefully,
The Mc gang.
Back again
It has been a while since my Mum posted here. I was very sick little girl but now I'm smiling again! I still have a bad cough and need an inhaler but I'm able to enjoy my computer and of course McD's ice cream, once again. I'm back again at HBOT every Monday with Dad which is helping. I love going there and seeing Viviene and BJ and the oxygen helps my muscles.
Thank you to Glenn in Aberdeen for the kind donation. It is really appreciated. Mum got a call from the R82 rep this week and a seat has turned up so he's holding it for us which is GR8! Mum will keep you all posted.
Here I am on Daddy's knee. Can't you tell I like bright colours? All for now, TG x
Quick update ... 2/1
Wee Gracie is in hospital in Belfast at the minute. She had been making good progress, temp finally staying down, cough loose and appetite picked up but got a bit tight last night. Her white cell count is elevated though and chest xray showed streaking in keeping with the flu virus and enlarged lungs (and damage from 2001.) Daddy is with her at the moment and I will go down tomorrow. They've been giving her nebulisers, some intra venous fluids to rest her and another IV antibiotic, although they feel that she is well over the virus that we've had.
I will post again soon.
I will post again soon.
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