Today we saw opthamology, nutrition and gi.
Opthamology said her eye sight is good… As far as the tracking issue since her scooter incident, we should see the eye tracking Dr so that’s another appointment.
Nutritionist is pleased with what we’re doing and wants her to stay on her feeds, no talk of decreasing anytime soon.
Gi… Always a long appointment with lots of unknowns. What we do know is that she has something more than her normal going on. Dr believes it’s Intussusception. They think it’s around her g tube. Waiting for the team to get back with us on a plan. We also discussed how her colonic flush at times causing autonomic issues… They said it’s a Visceral reaction and just further proves her autonomic dysfunction. She also told the nurse that her pain has been at a level 8…anyone who knows addyson knows she never goes that high so it must really be bothering her.
It’s honestly just a long day with still lots of unknowns and reminders that she won’t ever be cured and that while she looks normal she is a little girl who is fighting everyday to do basic kid things. She is battling against multiple organ systems and when one acts up they all start flaring and getting out of sync.
Beaming with hope 