Day 9 - Almost there...

Hey there team Alex, 
So we're on the final leg of our inpatient stay and plan to head home tomorrow - 
HOORAY!!!🎉 

Another busy day with input from multiple teams - neurosurgery, neurology, rehab, OT, Physio, Speech, Dietitian and Nursing. 

I've now got my head around PEG pump feeds (I think) and have been completing these myself on the ward as Alex is yet to eat sufficiently.

Alex got his stitches out today and the wound is looking good
Alex had about 4 seizures today. They were all short lived (around 5 seconds) and present differently to his pre-surgery seizures. We are still trying to figure them out. The surgery has significantly reduced the atonic seizures but it won't stop the tonic ones and that's what we are seeing. They do impact him functionally for a period afterwards; especially when trying to walk. The neurology team feel that medication is the only way to gain better control of these types of seizures. So we will need to continue to play around with medications and dosages in to the future.

We spent time in the paediatric Physio gym today to work on Alex's walking and stair mobility. He did really well with his walking but stairs remain an issue that will need ongoing rehab at home. 

I'm really proud of the improvements Alex has made during his recovery. Even though the surgery itself went really well, the process hasn't been without it's challenges. But we've come out the other side and so far I'm not seeing evidence of the drop seizures that can be so dangerous 🤞. I am seeing more of his smiles and personality shine through though which is lovely. His recovery journey is far from over but I'm looking forward to continuing it at home and hopefully enjoying life together as a family with fewer seizures.

Dup15q # Believe 

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