In the few months we have been looking, researching and trialing standing frames. Standing frames are not funded by the NSW government and as the one that Faith requires are around $6,000 we have been approaching charities and organizations if they are able to donate part of the sum we need to buy Faith's standing frame. We were recommended the Squiggles Standing frame, we have trialed it locally but sadly the company we used didn't have all the bits and pieces and though Faith got to have a quick stand in it it didn't fit her properly and thus we couldn't borrow it to have a go. The day Faith trialed it we were at early intervention and no other babies came so we had the room to ourselves. To keep Faith distracted bubbles were blown around the room and we lay her in the Squiggles stander, it is a beautiful lime green, like her pram. As we standing was slowly inclined up I was wondering what Faith must have been thinking. I think it must have been an amazing sensation for her. As when she got her balance and looked around she looked happy, she burst bubbles and smiles. I think it would be so wonderful for Faith to have a standing frame. After seeing the orthopedic surgeon last week we realized it was more urgent for her to have a standing frame, Faith's hips need to have that pressure of standing to make the muscles and bones work. As we don't want to cause more problems by not getting her up we will try to get it for her as soon as possible. It would be so nice to see her upright. She looks so big and tall not a baby anymore but a toddler. I do sometimes find that hard to take in, as she still isn't able to sit up by herself yet or crawl, I need to keep reminding myself she is a toddler.
We have a physiotherapist in Brisbane but we only see her when we are clinic, she is there to give us guidance with equipment and spina bifida related issues and she is wonderful. Since we don't see her weekly it is hard for her to help us with week to week issues. We saw a local physiotherapist locally but we don't seem to be getting anywhere and I am just not happy with it. I keep asking how to help Faith progress further and get the same answer from our local one. Last week I was talking to friend who also has a child with special needs a lot younger than Faith. She was talking about how she sees a private physiotherapist and what wonderful progress they have made. She was telling me about the aspects that need to be achieved before her son can sit up and I realized no one had ever told us that. After talking about it, I realized there is so much more we could and should be doing for Faith. The last months she has been well and she is getting stronger so now is the time to help her get stronger by seeing a physio at least weekly so Faith can learn to roll and sit up. It has given us something to think about and make enquires to organise something similar for Faith. I was so grateful to my new friend for sharing this.
We can see that we need to organise this standing frame as soon as possible. It does take time to order it in but understandably the company won't order it in until we pay in full. It is just hard, knowing our child needs this piece of equipment urgently and not having the funds to do it. So, I have written letters, including a letter from Faith, information on Faith's conditions, received support letters from physios, OT's and doctors and sent them off. We were so excited when we received our first donation, now safely in the bank. So now I just need to keep sending out letters and contacting organizations until we have the amount we need. We have found ways to reduce costs, we are hoping the Stingray R82 (pram) play tray will fit the Squiggles Stander that takes off about $700 and our physio in Brisbane has recommended a different head support so we are making little tweaks here and there. My big goal is to have the money by the end of July so we can order it and hopefully it won't take 3months to get.
When we were in Brisbane we tried out another standing frame, the Jenx Supine Stander and though it was a lovely standing frame and cheaper it didn't meet Faith's needs so back to the Squiggles. The physio thinks that the Squiggles is the way to go. It is so hard asking for money as we would like to organise it all ourselves but with all the extra expenses it just isn't possible. We understand that each community group, charity and organsitaion has so many requests made and they try to help as many people as they can so we will just do what we can. So let the fundraising continue.