Sunday, 19 August 2012

And it arrived....the Squiggles Standing Frame

Drum roll......Faith's standing frame arrived, I wasn't sure we would get there but we did again...

When we were first mentioned too that Faith would need a standing frame and it was another thing we needed to trial and experiment with different ones I was really excited not like when we first told that we should get a special pram. A pram that had support, at that suggestion I was shocked, I thought no we won't need a pram like that as Faith is going to be strong enough not to need those supports. I was scared, I was scared for Faith and what the physio was meaning, (thought bubbles in my head, wheel chair, unhappiness, unknown) was this how it was going to be?  I was scared that the pram would scream 'disability' so I was not really into the idea, but it has been some months since we got the stingray R82 pram, nearly a year since it was first mentioned and I think the Stingray R82 pram is perfect for Faith. It is not only a funky looking pram but Faith enjoys being in it and all the attachments for support are removable for when she gets stronger and when we don't need them. It has a play tray and she sits up in it and plays and she can follow me around the house and it puts her at the level of people sitting so she feels included. Lying on the floor makes her feel threatened I think, understandably. So when the standing frame was suggested, I was excited, I thought, Faith can stand up, she can see the world from a different view point, it is another step in helping her develop and get stronger. It is amazing how I have become immune to equipment I once thought scary and daunting but now I see it as a way forward. It is now part of our life.

We were first told that the standing frame wasn't covered by the NSW government so it meant we had to raise the thousands of dollars needed privately. Wow! Where do we start, what a huge task, I needed direction on how to get started. I met with a lovely fellow from the Northcott Society who now visits every few weeks to see how we are going and if there is anything he can help with. A great blessing! I wrote a letter and he gave me advice on additional things to include, I also included a letter from Faith with photos so organizations and businesses could see what a beautiful and blessed little girl Faith is. I printed out information on Faith's conditions and support letters from a variety of therapists and various doctors. A mountain of paper later, my fundraising packs were ready to be sent out. Within 5 days I got our first donation and that was just so exciting and encouraging, we applied for a couple of grants and were successful but we will still short, I sent out more fundraising packs and more donations came in and we were still short but out of the blue our church family supplied the remainder and we were there. 

Our order for the squiggles standing frame was placed and we were told it would take 8-12weeks for it to arrive, oh, so long. In the mean time we had taken Faith to see the orthopedic surgeon and he said that it was crucial for Faith to get her standing frame so that her hips could be pushed into place but the arrival was still so far off. We just had to wait. About a week a go I was contacted by the company saying that the squiggles standing frame had arrived and it had only been 6 weeks! It was delivered this week and when we placed Faith in it to fit it correctly she was happy, she loved it! She kept trying to push herself forward. Her ocean blue eyes glowed with happiness and being in a different position. We will put in her in it for about 15minutes a day and work up to more. When Faith is in the stander, she wears her AFO's and her leg wraps for additional support. After Faith only being in the sitting position and lying on the floor I didn't realize how tall she is. She is growing and I love that. Amongst the excitement of it all and for a fleeting moment that is soon pushed to the back of my mind, I see her walking around and the house, playing with the toys she wants not needing all this equipment, then I exhale and come back to my reality.

1 comment:

  1. That's great news Joy. Wonderful to have your church family assist like this too.