Jason, my dad and nurse Christine took Reuben to Children's today. I was unable to go for other reasons so sent them off with a whole load of questions. This is what I'm gleaning from speaking to Jason just now. It's amazing to manage to get all the disciplines on one day and also serves to highlight the complexities of CHARGE
Urology - it appears despite what was said re the scan that they can't be visualised. It'll take 3 surgeries to find/descend them. This is horrific. Also the hernia will be operated on. I guess the UK is off then. My poor love.
Opthalmology - excellent report on Reuben's eyes. Dr described his vision as "fantastic". Always worried about the future though but Reuben has proven to be extremely visual where for the 1st 6 months his eyes had to compensate for his lack of hearing. Dr said, "absolutely not" re registering Reuben as DeafBlind.
ENT - no progress re the trach
Audiology - have asked them to additionally see Audiology as Reuben responds to "where's your diaper?" by pointing when he's not wearing his BAHA. Progress since the PE tubes were put in.
Paediatric surgery - the new Entristar button is leaking so we don't know how much formula he's losing. I hope something can be done as we will not allow them to change it unless he's under anaesthesia.
Paediatrician - round up with Dr Charlie on growth and overall development
2 comments:
Wow sounds like a big day of ups and downs. I hope you can get more answers soon and you can move on to bigger and better things.
Eva is registered as Deafblind and its great the help and support we get through the state.
Good luck with everything,
Crystal and Eva
You may want to reconsider the deaf-blind classification. I was torn about it too until I realized that it is just a tool to obtain additional services and support for when Evan gets to school age (coming quick for us, and it will be before you know it for Reuben also). It sounds horrible, but any combination of hearing and vision loss qualfies.
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