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Hi again-

I just want to let our CHaRGE family know that our 9 mo baby has

surgery scheduled for Tuesday at 12:00. His opthamolic plastic surgeon will

be looking at his tear duct. He has pretty extensive coloboma in both eyes

and micropthmalia in one of them (small eye) and he wears a prosthetic shell

in the small eye. Since birth his tear duct has not been functioning

properly and it is causing chrinic conjunctivitus (pink eye). The infection

is getting to the point where the occularist is reccomending that we leave

the shell out every so often to clear the infection. The problem is that

although the prosthetic shell makes his eye look normal it is more

functional than that, the purpose of the shell is to enlarge the eye socket

to make his face symmetrical. The eyeball in that eye is so small he can't

open the eye without the shell. So every thirty days we have the shell

enlarged so that the face will continue to grow. Therefore, leaving the eye

out for more than 3 days at a time is not an option to avoid further

surgeries down the road. We were initially going to wait and coordinate the

surgery with his palette surgery in September but the infection is getting

worse.

When he goes to surgery they will first see if the reason the tear duct is

not working properly is because it is blocked, this is the best case

scenerio, they will try to irrigate it by flushing it and if it is blocked

this will inclog it and that would be great. The secon case scenerio would

be that it is colapsed, this could be possible since he has cleft lip and

palette and micro eye, if this is the case they would put a small stint in

the tear duct to homd it open for 6 months and remove it in 6 mos. The

final scenerio is if the tear duct didn't form properly if this is the case

they will need to schedule a surgery for when he gets older to manufacture a

tear duct by drilling a small holle in the nose to make the tear duct. I

think the thing that I am most scared about is sedating poor . Please

keep him in your prayers. The following Tuesday he is being sedated AGAIN

to perform an MRI and ABR (they wont combine the two). I chose to do the

sedations back to back because he regresses every time he is sedated so I

thought if I put him under 5 days apart it would be enough time to recover

from the anesthesia, but only have to relearn everything once. I hope we

are making the right decision with that one.

Please keep us in your prayers!

Thanks mom to Beautiful baby (9mos. CHaRGER)

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