The c word…

Not the one most of you will be thinking!! But cerebral palsy..

I have never mentioned cerebral palsy once when talking about Wilson but this was mainly due to it never being “officially diagnosed” and never really knowing which type he has.

But we had our first appointment with Wilsons new paediatrician today and it went really well! He specialises in children with disabilities which is why we were referred to him from his previous paediatrician. His physiotherapist and occupational therapist were also at the appointment. As he’s doing really well on the medication baclofen we have to increase his dose from 2.5ml once a day to 1ml 4 times a day (I think I’ll need to set alarms to remember this!!)

His weight hasn’t changed much since he was weighed in September, which surprised me but they aren’t too concerned and will just keep an eye on it.

He mentioned cerebral palsy so I asked about which type Wilson has and he said at the moment all he can tell us that his cerebral palsy is “mixed”

He is definitely effected in all 4 limbs but more in his legs than his arms, he has dystonic movements and also spasticity (mainly in his hips) his left side is weaker then his right but overall he’s doing really well and impressing everyone with things that he can do! He is going to need day time and night time splints and we have an appointment at the end of January for those.

We have an appointment this afternoon to get piedro shoes which provide extra support for his feet and ankles until we get the splints 😊

Busy day today so Wilson is enjoying a snack and some hey duggee before we have to go out again

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