What a year it has been! There has been twists and turns, down roads and paths we hadn't intended but we have God willing made it through each second, minute and hour that lead into days and months. There were times when I felt I might just sink but here I am still going.
Some highlights of the year!
Faith hasn't been in hospital for over 13 months
Faith can now go without oxygen when she is awake. Yay!
Faith got her sting ray R82 pram and the squiggles standing frame
Another great achievement is Faith has halved the medication she takes and will soon be on none.
We sold our high set house and bought a low set house, now we can easily play outside and go out with ease.
We also get to go to more social outings and play dates and that is WONDERFUL!
We have met some new friends and enjoyed spending time with old ones :)
The biggest news being that Faith has no NG tube and is eating orally, though still having struggles with eating, but we are making small steps forward and that is the most important thing. We have so many things to be grateful for and so many blessings. I wonder what great and wonderful things will be in 2013!
Showing posts with label Squiggles Standing Frame. Show all posts
Showing posts with label Squiggles Standing Frame. Show all posts
Tuesday, 1 January 2013
Monday, 15 October 2012
Yay for the physio! Progress!
I have been trying to get to the computer to write a blog for days and it just never seems to happen something catches my eye or I forget what I was doing, and other times I have the blog post all written ready to print out of my brain then other days my brain is nearly on overload so I can't seem to write anything. Even when I am pressing escape escape and my brain isn't responding. At last I have few moments while Faith is having her one sleep of the day. I am composing a list of tasks I need to achieve today and more and more keep getting added but I decided to just stop for a minute.
We are thankfully just plodding along, it is good when days just roll by and there are no trips to the hospital. We are still seeing a physiotherapist every two weeks now and we saw her last week and she said she saw improvement too. Faith's legs are moving more and she can see strength building which is such a blessing, we have seen her strength increasing but usually when we get near most professionals Faith doens't want to entertain just hide and pretend, you can't see me. We have been using the squiggles standing frame and Faith loves it, she holds her head more freely and is so happy. It hasn't been checked by a physio so for the first time packed it up into our updated car and it fits beauitfully, it wouldn't have fitted in the other car and I could even take the pram too so that it great.
The physio was happy with how Faith stood in the standing frame but thought her AFO's and leg wraps needed to be upgraded as they were too small. A sign she is growing. A job for when we go back to Brisbane in November. Faith did amazingly, apart from standing in her standing frame, she practiced rolling, and lying on her tummy. She did really well at all the tasks given to her. It did require some encouragement from using the ipad and listening to music. But whatever it takes to help her along. Life it seems is calming and I couldn't be more happy.
We were sent home with excersies to keep the progress going.
In the standing frame we are to move Faith into a more upright position for a short period of time to get her hips and bones into the right place. We can still use the angled position until she gets use to it as she tends to breath a bit more deeply so it requires her to work harder.
We are also to encourage her to use her arms above her head when in the standing frame and make sure we give even attention to each arm.
Continuing on with Faith's side lying and getting her to reach for objects and then getting her to roll onto her tummy and placing a towel under her arms. Also, get her to move her head from side to side so strength again builds.
Thumb stretches, as Faith has been more inclined to make fists and try and play with fists. She is using her fingers more but we still have to say, fingers, Faith use your fingers. Her thumb is coming across the palm of her hand a bit much so we just have to do some simple excerises to stretch it so she doesn't need to get hand splints. That is now incorporated into play so she doesn't even realize. There are so many aspects to work on but it is working and we are all getting there.
Overall we are making progress and it is exciting!
We are thankfully just plodding along, it is good when days just roll by and there are no trips to the hospital. We are still seeing a physiotherapist every two weeks now and we saw her last week and she said she saw improvement too. Faith's legs are moving more and she can see strength building which is such a blessing, we have seen her strength increasing but usually when we get near most professionals Faith doens't want to entertain just hide and pretend, you can't see me. We have been using the squiggles standing frame and Faith loves it, she holds her head more freely and is so happy. It hasn't been checked by a physio so for the first time packed it up into our updated car and it fits beauitfully, it wouldn't have fitted in the other car and I could even take the pram too so that it great.
The physio was happy with how Faith stood in the standing frame but thought her AFO's and leg wraps needed to be upgraded as they were too small. A sign she is growing. A job for when we go back to Brisbane in November. Faith did amazingly, apart from standing in her standing frame, she practiced rolling, and lying on her tummy. She did really well at all the tasks given to her. It did require some encouragement from using the ipad and listening to music. But whatever it takes to help her along. Life it seems is calming and I couldn't be more happy.
We were sent home with excersies to keep the progress going.
In the standing frame we are to move Faith into a more upright position for a short period of time to get her hips and bones into the right place. We can still use the angled position until she gets use to it as she tends to breath a bit more deeply so it requires her to work harder.
We are also to encourage her to use her arms above her head when in the standing frame and make sure we give even attention to each arm.
Continuing on with Faith's side lying and getting her to reach for objects and then getting her to roll onto her tummy and placing a towel under her arms. Also, get her to move her head from side to side so strength again builds.
Thumb stretches, as Faith has been more inclined to make fists and try and play with fists. She is using her fingers more but we still have to say, fingers, Faith use your fingers. Her thumb is coming across the palm of her hand a bit much so we just have to do some simple excerises to stretch it so she doesn't need to get hand splints. That is now incorporated into play so she doesn't even realize. There are so many aspects to work on but it is working and we are all getting there.
Overall we are making progress and it is exciting!
Sunday, 19 August 2012
And it arrived....the Squiggles Standing Frame
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.
Tuesday, 26 June 2012
The hunt for a standing frame & Phyiso
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.
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.
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