(92.5 Percentile at Birth)
Noah is currently not doing so well. He is having severe muscle stiffness and his seizures are starting to come back a little. He is back to being constantly upset when he is awake. It breaks my heart. Aaron and I are exhausted but we are trying to keep each other sane.
We are back and forth to the hospital in Perth (PMH) quite a bit. Noah now has a Neurologist, Occupational Therapist, Physiotherapist, Dietitian, Speech Therapist (Who helps with feeding), Ear, Nose and Throat Specialist, Pediatrician, and I'm sure I’ve missed some! He will also in the near future see the Ophthamologist and a Gastrostomy Specialist. Then there is our Palliative Care Nurse who is our overall coordinator. Plus we have to go to the Pharmacy to collect medicine and also deal with hospital supplies for Noah's feeding equipment.
This month Nana Dot came back for a visit. I was able to fly to Melbourne for a quick visit to see my family. My younger brother is in hospital, but it looks like he will make a full recovery :)