We have been here nearly 2 weeks and in that time I have learnt more about Ava, her complexities and how to help her than I had in the 2 and 3/4 years I have been looking after her. The OT and physio services are not very good back home and it hurts me to say that because the people we work with are lovely people. I know its an institution thing and budgets leading to cut services and longer waiting lists but lets cut to the chase here; Every parent who has a child with a disability never asked or planned for this to happen and they deserve to have the best care for their child not to have to fight for it. These parents should be helped, supported, nurtured to do the very difficult job they have ended up having to do. Instead we fight, fight, fight all the way for everything. If a child needs a service or equipment they should get it, end of story. Instead they make you prove that your child needs it. Hello! Why would I actually choose the hideousness that is the equipment she needs if she didn't need it. Please note the word - need. Not want, but need. A basic requirement for my complex needs child to exist. It goes back to professionalism too, I am not a qualified OT or Physio (although I am tempted to do the exams just so I have a clue what comes next!) so why would I know what is the best exercise to do for my child or why would I know what the consequences would be if a certain task wasnt done with my child until I am told. They should be guiding us. In reality we had a few visits, were given equipment and left to get on with it. We had to travel over 4000 miles to get great care for Ava and spend thousands to do it. It really isn't a great state of affairs.
I now have a list of equipment to get and exercises to do with Ava and more importantly I know the worth of those exercises. If I had known the consequences of a baby not feeding for 12hrs we wouldn't even be here. Never underestimate the power of knowledge. If these exercises aren't done and the left arm doesn't get a proper arm brace then Ava's left arm will curl under and be no use at all in future. As time has gone on it has become apparent that she has lots of trouble using her left arm due to the trauma her brain suffered when she was 3 days old. As I watch her in therapy I see the huge difference between the two arms.
Having said that, Ava is doing so well with this therapy. Her body and legs are so strong now and she started with the weight lifting today to help strengthen her arms. She is also very close to sitting on her own!!! It is very exciting to see. Her seizures are very much reduced, she is growing well and going from strength to strength. I can't believe we only have 2 weekends left here. Its very much like being at home except its hotter and we have a pool instead of a lawn in our garden. Ava has had the equivalent of 20 weeks therapy at home, there are 20 weeks worth left to go. We are hoping to return with a stronger more mobile Ava. Fingers crossed x
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