Quinn’s 3rd leg is a lot different to her others. This one is a lot stronger and sturdier, it has a bend in the knee so that she can move it similarly to her regular leg rather than it being straight. This one seemed like it would benefit Quinn a lot more as she would be able to crawl with it on, but she would also be able to stand herself up with it. We got this leg on 10th January and Quinn wore it for about 2 weeks with no problems at all, we started of to put it on for only half an hour a day to ger her used to wearing it as we had issues with the other 2 so didn’t want her to get used to not wearing it. Unfortunately, all of a sudden, she decided she didn’t want to wear it anymore and had a full on melt down when we put it on her, we didn’t force her to wear it, we just thought we would leave it to the next day. We seemed to have this issue right up until now, there is the odd day that she will wear it but more days where she wouldn’t. When we get a new leg, they like to book a review in to see how Quinn is getting on with it and check if anything needs to be amended on it. One of the issues we had with this new leg is that when she stands up, we must be at the side of her to put the leg straight and it doesn’t do it on its own. We spoke about this and said we would mention it when we go for the review to see if there is anything that can be done about it.
When we were preparing to get Quinn’s 3rd leg we said we would re-apply for Disability Living Allowance (DLA). We applied for this when Quinn was 3 months old, we got a letter possibly a month after applying stating we were unable to claim for Quinn for mobility until the age of 3 years old. The care side of DLA is available for anyone with a disabled child right from the age of 12 weeks+. We got a letter saying we hadn’t been accepted to receive DLA for Quinn as they didn’t deem it that Quinn required any extra care than a normal child. When we got this decision, we didn’t see any point in appealing the decision because I could sort of see where they were coming from at the time and I didn’t really have any energy in me to fight it at that stage. James and I discussed it a few times and decided we would apply again when Quinn reached the age of 1.
We applied for another form to be sent to us in the post at the end of October 2018. We sent this off with lots of information in it which is required and even asked nursery to fill in a small section about how her leg affects her whilst she is there. The care Quinn requires now is a lot more than what she did before, it affects her and us daily. The simplest of things become hard work for example going shopping requires 2 people so she can be carried by one as when she is in her pram or a trolley, she tries to climb out of using her little leg as leverage. The bigger she is getting the harder work this is getting because she is heavy now which means I am struggling to carry her (I am only little).
One of the main reasons for us applying for DLA is because we have quite a way to travel to the appointments and they are becoming more and more regular which is beginning to add up in fuel costs, mileage onto our car and we both must take time out of work and take Quinn out of nursery. We received a letter towards the end of January stating we were unable to claim due to the same reasons we first applied. I was absolutely fuming with this and got very upset about it, but we appealed this and asked for a mandatory reconsideration and have put a few more points forward as to why we think she’s eligible for it. We have recently received a letter back stating that we had not been successful from the re-consideration so I decided to contact my local MP about this decision to see if anything could be done. The next step is tribunal and we are waiting to hear back from our local MP to see what we can do and see if we have a case. This is just a waiting game now and there’s nothing we can do yet which gets me angry every time I think about it.
We would be delighted if you will continue to read my next blog which will be based on Quinn and her getting used to her leg – updates will be on our Instagram. If you have any questions please do post them below, I would love to answer them for you. We love reading any comments, so it would mean a great deal to us if you post in the comments.
Much love from Natasha, James & Quinn