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All posts for the month April, 2013

Physio update

Published April 19, 2013 by swanfreddie

I assumed that once Freddie learnt to sit I could put a big tick in that developmental box and move on to focusing on his walking, but it would seem over recent months we are being drawn back to focusing on his sitting.

Freddie has always sat with a bad posture, he has weak core muscles(hypotonia) which is why he struggles to maintain a good sitting position. He either sits with a curved spine or almost in a half sitting/half laying down position, neither of which are good for his spine.

We had a routine appointment with Freddie’s physio this morning and we spoke about the ever growing concerns over his back. I feel that his sitting has been getting worse lately and the physiotherapist agreed that shes been worried for some time about it and his risk of developing scoliosis and thoracic kyphosis.
We do have an indoor chair for Freddie to sit in when he gets tired  but he still seems to be able to slump a little in it. So we decided that we would have another physio appointment this afternoon and she would bring out another chair we could try with Freddie to see if that helps him sit straighter.
Unfortunately the chair wasn’t right and Freddie very quickly slumped over.We now need to spend some time looking at what other chairs may be suitable for Freddie to help protect his spine.

Before Freddie’s physio left we came up with a plan to help keep Freddie’s spine protected. It includes doing some spine stretches daily and unfortunately means we  will be limiting the time Freddie is able to spend sitting independently.

It’s a bit of a blow for him developmentally as hes been doing so well with his bum shuffling and it’s so nice to see him have the freedom to be able to move around. He will now spend a maximum of 20 minutes on the floor before having to have a break and sit back in his indoor chair for 30 minutes. Even though his indoor chair isn’t quite giving the correct amount of support it’s alot better than his floor sitting position. There was also talk of looking to getting a back brace for Freddie.
It feels like we are stuck with either holding him back developmentally by stopping him being free on the floor or risk permanent damage to his spine. Not a nice situation to be in.

chair6

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Undiagnosed Childrens Awareness Day

Published April 12, 2013 by swanfreddie

I knew on the day Freddie was born that he had a syndrome . As soon as I held him I knew something wasn’t quite right. He was very squashed and his ears looked a little unusual. I remember exchanging worried looks with his dad and we both went on to question the midwife , but we were assured he was just fine. He just needed to uncurl abit she told us. A few hours later our fears were confirmed and we were told that Freddie was showing alot of indicators of having a syndrome, although they weren’t quite sure what type. He was whisked off to the special care baby unit and this was where our journey into the world of genetics began.
Since that day Freddie has seen 3 different geneticists, each of them have prodded, poked and photographed Freddie. Making note of every unusual feature he has. Every appointment I have gone into with hope that this will be the day we get a diagnosis, I have hoped to leave armed with leaflets and information to help me understand what to expect from Freddie’s future but I’ve always left disappointed and with no answers.
There are so many reasons why a diagnosis is incredibly important to Freddie and our family and I wrote a blog post a while back about why a diagnosis is important to us. Without a diagnosis the future is a very scary place as we don’t know what to expect from Freddie, will he ever walk,  learn to feed himself or go on a toilet? Will he reach his teenage years and live interdependently? There’s a worry he may possibly go on to develop scoliosis and thoracic Kyphosis and there’s a risk his epilepsy could worsen and develop new types.
But I know that we may never get a diagnosis for Freddie and now he is a bit older I have learnt to except this alot more. I’ve stopped googling his symptoms trying to find out what he has and have turned my attentions to just embracing Freddie.
And here he is with lots of his achievements –

Learning to operate a switch toy

Clapping hands

Laughing

Playing games

Bum Shuffle

Learning to feed

Playing football

Tomorrow is undiagnosed childrens awareness day! Join us in celebrating children like Freddie by wearing pink or blue.

freddie smiler