Yesterday we went to St Giles for our third 'Second Skin' appointment this year.
We met with the ladies about 6 months ago to discuss getting Noah a body and dynamic foot splints. Noah has had AFO's since he was a 'toddler' (if only he actually could toddle!) which are hard plastic foot and ankle splints. As the years have gone on though his feet are turning out more and more, and the AFO's are putting more and more pressure sores on his ankles and feet as his feet fight against them. He hasn't been tolerating them very well at all over the last year or so.
One big problem for kids with Cerebral Palsy is that they can develop scoliosis. Noah has had a big growth spurt over the past twelve months and his scoliosis has gotten so bad. We have tried to slow it down with positioning but it hasn't helped very much, except to keep it mobile. We are lucky at the moment that his spine is still mobile and not fixed. Once it gets to that stage there is a big chance that he may need a very big operation to try to correct it as much as possible. This involves putting metal rods in his back etc. so we hoping it never gets to that stage. Unfortunately though although you can slow it down to an extent, you can't really stop it developing.
Six weeks ago he was measured up for his splints and we then had to find nearly $2500! Yes - that's how much it costs!! The splints are very involved and made for the individual child, but it still seems like anything made for special needs kids is so expensive. We were very lucky and had Cerebral Palsy Tasmania and The Variety Club both fund enough money for him to get all the splints that was recommended.
Yesterday was his first fitting. Second Skin is a UK company which is also now in Australia and based in Sydney and W.A. They come down every three months or so to Tasmania for a clinic.
The aim of the splints is to improve symmetry, and stability in his pelvis, trunk and shoulders and to dampen his muscle tone down all over his body. His brain is continually wanting his body to hold itself in certain positions, which isn't good for the muscles and limbs. Noah always wants to have his arms up towards his chest. The arms splints are great as they keep his arms straighter, but still allow him to bend his arms if he wants to.
This is Noah without the suit on (I HATE looking at his spine!) and with it on this morning.
It helps him to sit up so straight without much support at all! He doesn't collapse into his spine with it on, like he normally would. This also means he is much taller and now his wheelchair needs to be adjusted as he is sitting up so much higher!
The body splint is easy to get on, but the foot splints is another story! It took me about 15 minutes to get one foot splint on this morning. The tricky thing is getting two toes into one little hole. Jalen freaked out when he first saw them on as he thought they had chopped off Noah's toes! These will be much better as they hold his feet in a good position, but still allow him to move and don't put as much pressure on his ankles and feet. Check out the logo we chose for them - its the old Hawks logo. Unfortunately they didn't have the new logo, but Aaron thinks they are great!
I think they are going to take a while to get used to, for all of us! Noah has to build up to wearing them for 8-10 hours per day, 6 days a week. So far he has tolerated it really well and actually started getting agitated when we took it off today! At the moment he is building it up by an hour every day. We will have to get up extra early to make sure he has it on before school now. I'm hoping it gets a lot easier to put the foot splints on.
We aren't sure how it will go during the Summer, but the woman told us that we just have to put it on for a couple of hours if it is really hot. It should last 12-18 months depending on how fast he grows, but knowing Noah it will last a lot longer than that. Hopefully it will fit for a long time as its hard to find funding again so soon after being approved for something so expensive. His wheelchair is going to be getting a whole new makeover in the next little while too, which we also have to find funding for. Lucky for us his Occupational Therapist is able to chase it up for us.