Blind/Visually Impaired Support Group for kids

[joel's girl]

Its a bit quiet in here....

How is everyone going ? Would love to chat more on this thread if others are interested.

[caitlansmum]

hi, would be good to talk more, i have just had an operation myself so thats why i have not been inhere for a while now, we are off to melbourne on Wednesday for Caitlans second surgeons appointment and then surgery is now booked for 4th november which it will be good wont help her eye sight but will help her head tilt and her muscles in her face and neck

How is everyone going>>

Hayley

[Dragonbub]

Caitlansmum - I hope the surgeons appointment went well? November seems so far away, I can't imagine how you must be feeling with that looming in the future.

I don't strictly speaking have a baby with visual impairment, but as I mentioned, my mum is almost blind with a genetic eyesight disorder, so I feel it is appropriate for me to hang out in here a bit. I will need to get Caden tested in teh future and it scares me to death the thought of him having it.

My thoughts are with you all.

[Sym]

Dragonbub: Thanks for the info, it's nice knowing that people can and do live with RP. I really hope little Caden has no troubles later in life.

Caitlansmum: How are things going with Caitlan?

Joels Girl: How did everything go with Mish's appt, if you don't mind me asking? I hate to sound ignorant but I thought Glacouma only affected older people, just goes to show how many different things can and do go wrong with children. So sad sometimes when I think about it all. I haven't used Vision Australia services purely because Bryce's sight is good for the moment, do they have info on their website that might be helpful to you?

Bryce was due to have Electrophysiology (lights flashed into his eyes while sedated) last Friday but he had diarrohea on the day and they wouldn't admit him into the hospital ward. We have been rebooked in for the 2nd July so as long as he's well on the day they will do the procedure. Can't wait because then we will be more certain of which Syndrome he has.

Hope everyone is having a good week!

[joel's girl]

Sym - Our appointment was postponed til 11th July so we are still waiting. Thanks for asking. We get that comment alot about glaucoma being an elderly disease. The congential type is differnt in its cause but the affects / damage is the same as elderly suffers.

Good Luck with Byrce's procedure on the 2nd. Let us know how things go when you get a chance.

Dragonbub - Thanks for the support.....i really appreciate it.

Caitlinsmum - How did the appointment go ? Let's hope November comes around quick !

We have seen some improvement with hamish's sight - at least we think so. I will be interested to see what the dr has to say on the 11/7. We are looking into traditional chinese medicine as an alternative treatment to balance the fluid pressure within Hamish's body in the hope that it may assist with keeping the pressure even. Im open to anything that will help.

Got to go - the boys awake.......talk soon ladies.