OUR DAUGHTER CHLOE
Lately i had been noticing Chloe who was born with a rare genetic disorder called Incontentia Pigmenti, who has to have yearly eye check ups to test for Retina detachment, her right eye had started turning inward when focusing, bumping into objects and complaining she feels sick.
I rang her eye specialist to see if i could get in immediately after explaining our concerns, which he agreed to see her straight away.
Well we went to the doctor yesterday and we found her struggling to see out of her right eye when her left was covered. After Dr Hing put the drops in and was checked later, said she showed no signs of Retina detachment which would require surgery, but she was slightly blind in that eye.
We went out after and bought her glasses which she picks up next week. She will need to wear them all the time except when shes asleep. Apparently the prescription is very strong and the lenses will be quite thick so the optometrist will try to grind them thinly as possible. She was excited when she was fitted with some barbie glasses and matching pink case. I hope with the finished product she will not get too upset because they will look different on her.
My mother seemed very upset and rang me last night to see if i was ok and not depressed and probaly hitting the bottle which i can honestly say i didnt and felt fine.
Time will tell but i am sure we will have a little fight on our hands to make her wear them. We are to return to her Dr in 3 months to see if the eye has started working again and recorrecting with the glasses, if not her left eye will be patched 24/7 to make her use her right eye. If this does not work surgery will be an option.
I feel so helpless and sorry for her, because this explains her grumpy behaviour lately. She has been through enough which has left scars on her body and her teeth are horrible, they are gaped and look like sharks teeth, which she will need dental cosmetic surgery for later.
The cost of all this has so far been a lot and we are sure we will have to dig deep into our pockets over the forthcoming years.
Anyway we have our fingers crossed for her, afterall they are only glasses and are in fashion now, and only hope her eye gets better and doesnt go completely blind.
So yes, yesterday was a extremely busy day and besides all that everything is great with Jordan and Nicolas.
Take care all to next time.....
Arevoir Kiralea
6 comments:
I hope Chloe feels better. The Barbie glasses sound really cute. I bet she'll look great in them. She sounds like she has been through a lot already. Thank god her retina wasn't detached. That sounds really painful. I hope everything works out.
Kristin
I'm betting that Chloe will look very pretty in her Barbie glasses. Hope it all goes well for her. I'll be saying a prayer that it does.
Things we do for our kids, all worth it thuogh isn't it.
We look foreward to seeing Chloe in her facy Barbie specs, hopefully they do the job
Griffin had to wear glasses at age 4 months old until (I can't recall)but he left his on amazingly enough. I hope that little miss Chloe leaves hers on too. I would love to see a picture of her in them, they are so darn cute with glasses on. What if you found a doll that wears glasses or a Barbie with glasses? It might help to encourage her to wear hers.
Good luck with that and I will be sending you an e-mail
Ask your GP about Enhanced Care Plan, might help with some costs for other things like speech, podiatry, oesteo, o/t, phsio ,psychlogist if Chloe ( or Jordan ever needs it) at $45 x5 per calendar year via Medicare its worth the paperwork. Medicare don't advertise it but many auxcillary specialists and GPs know about it.
Hi everyone
Thanks for your comments.
I dont always have time to check my messages, but i hope everyone is well.
take care
Kiralea
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