Help: DD8 needs surgery?

[taximomfor4]

My neice has a coloboma and microphthalmia and has had several eye surgeries. Her case was worse in that she was completely blind in that eye, and since it was smaller than the other eye (the microphthamia) it was very noticable. She started to get granulomas when she was 2yo so they had to remove the eye and replace it with a prosthestic right before she turned 3. If you want, I can send you my SIL's email address if you want to ask her about the surgeries her daughter had if that will help you at all.

Find out if your SIL minds me contacting her, first. If she is ok with it, I would appreciate her contact info!!
Thanks!!

Thanks for all the idease, everyone. This is so nerve-wracking. And since dd has other issues as well, we kinda know that she will need other surgeries down the line as well, for other things. I just want all of it to hold off as long as possible. And I always hope that some of the things will never get to the surgery point.

Beth

 

[ZPT1022]

Can't relate to the eye part, but my DS is two and has already had two surgeries, the first at 9 months. It is a very hard thing to go through as a parent. On the one hand you don't want to put them through anything unnecessary but then again you'd hate to think that you neglected to do something that could help them. It's gut wrenching. As far as preparing your DD, I know our Children's hospital offers hospital tours and I think siblings over a certain age are allowed to go too. We didn't go since he was so little both times, but at your DD's age I would do it. Also talk to them and find out but I was allowed to suit up and go in with my son (I carried him) and stay while they knocked him out. So the last thing he saw was me and the first thing he saw when he woke up was DH and I. I even managed to not cry until I left the room. After the first surgery I said I will never go again, that DH would have to do it, but when it came time again I had to be the one to go, I didn't want DH to do it. It is VERY hard to do, but if it's a measure of comfort for the kids it's worth it. I wish you the best and I would try to call other doctors and tell them specifically why you want the appointment. Even ask if they can review her records and then have a phone consult with you- maybe they can fit that in if not a meeting in person. Good luck

 

[saffymom]

My DS 3 had this surgery about 6 months ago. It actually did improve his vision quite a bit as he was able to switch from a bifocal to a regular lens.

Anyway, in preparation for the surgery, I spent some time researching it online. Unfortunately I don't have all the sites bookmarked anymore, but I was able to remember a few.

http://www.strabismus.org/index.html

And this is a page specifcally about the surgery.

http://www.strabismus.org/surgery_crossed_eyes.html

There is also a terrific message board out there about children and eye problems, but I can't remember it. I'm sure if you do a google search, you could find it.

Anyway, hope that helps a little. And good luck to you and your DD.

 

[safetymom]

I am a lot older than your child and that surgery was recommended to me. I had an injury to my eye when I was 5. I had a cataract on that eye until I was 23 so I don't see very well out of that eye. That eye has a mind of its own and the doctor recommended I have the procedure. I haven't done it because it doesn't bother me.

 

[Tinkerbelle'sMOM]

I'd stick with Cole...I work at another big hospital in the area that has peds optho and Cole Eye is the only place I would take my kid. 2 people I work with had their surgeries on their kids for the same thing there, and they were over 8 years old. Get an appointment and ask them to call you if something sooner opens up.

 

[justhat]

Beth, I sent you a PM with her info.