Not the start to 2018 we had hoped for

Last night Jax reminded us just how bad his sensory processing disorder (SPD) is, unfortunately his nurse went home sick (get better soon Nurse A xx) so we got a stand in nurse from a different ward who had never met Jackson before. She was lovely and went to do obs when he was sleep but she held him ARRGGHHHH he freaked out. It was totally my fault as I never told her how sensitive he is. so he screamed breath held shook it was very distressing for him. he finally settled off to sleep.

Today we had a visit from his neuro team, the genetic testing that they were doing as part of the 100,000 genome project have come back CLEAR!!!

This means that we are still no further to getting a diagnosis. However, this is only the first phase and neuro said how this was specifically targeting the genes associated with muscle tone and stiffness. He is going back to genetics to ask them to sequence the genes that are related to the gastric system, so it could be another few years until we get results from this. I’m not gonna lie I’m devastated!!!

On top of this neuro noticed how little Jackson was interacting he was watching his movement and his fixation with Peppa Pig and his hand flapping.  We tried distraction techniques but nothing was working. I asked what it is and he confirmed what we always believed that is that Jackson is Autistic.. he has been referred to psych for a more detailed diagnosis. Jackson’s sensory seeking is getting worse, hopefully, now that it has formally been identified he may start getting the help he needs in particular speech and language. The only way that Jax communicates now is by breath holding so hopefully this could be the key we need to access support.

As well as this his bum is really broken down again, he was referred to tissue viability who saw him today there is nothing that they can do to help him so they have re-referred to dermatology.

Not the start to 2018 we had hoped for xx

thanks again for all your continued support