I’m posting this update on Mia from Danielle. -Ann Z
Mia finally received her contact lens with a prescription of +8. We had to try 3 different contact lenses and all 3 were sliding around inside her eye. Due to Mia’s glaucoma her eye is not shaped normal and is what the doctor called “steep” so her optometrist had to order a custom fit contact that will stay in place. Mia will have to wear a contact that slides until her new lens comes in. It was crazy how good Mia was through all of this, I had to insert and remove 3 different lens and she didn’t cry. The last lens we tried was slightly thicker and more rigid and must have been uncomfortable sliding around, however she only tried to rub her eye a few times. I think she was much too busy trying to get off my lap so she could go through the cabinets in the doctors office. It amazes me how comfortable she is at all of her eye appointments, she screams the entire time we are with her pediatrician, however her PO is a different story. We find out in 3 weeks what we will be doing with her glaucoma valve and scarring on her cornea. I will keep everyone updated.
Back to the contact lens, I have this routine I follow every morning, mind you I work evenings and I don’t get home until after 12am and I have to submit a daily report, so I don’t get to bed until 2 or 3am. Needless to say, I am up with the kids at around 8am, 9 if I am extremely lucky. So inserting a contact lens on only a few hour so of sleep can be difficult. I need to have caffeine before I even attempt. Once I get the contact lens in, Mia is fine, she seems very comfortable wearing a contact lens. We have an in ground pool so when I take the kids in, I have to take Mia’s contacts out before going into the pool, and back in when she gets out.
Mia in the pool with her "Popeye squint"
Mia’s aphakic eye is extremely light sensitive, she has this squint that we call the “Popeye squint”, she is so light sensitive that she either squints or covers her eye when she is outside. I just wish she could go outside and enjoy a sunny day like her brother. Sorry, back to the contact, this evening while I was at work my husband called me in a panic, Mia was crying and screaming for almost an hour. My husband thought her contact lens folded or slid up under her upper lid and he could not find it. I had to rush home from work and when I got home Mia was clamping her eye shut and she did not want me near her eye. We had to hold her down while she was screaming so I could get the lens out. This was the 4th day we used this lens and we have not had any problems until this evening. I can’t imagine how she will react when I try to insert her lens tomorrow morning, it must be so irritating having a lens sliding around inside your eye. I just wish they sized her eye during her last appointment. We had to wait so long for her contact lens and now it doesn’t fit right and slides around. My poor little angel has endured so much. I just wish I could take it all away. Sorry, I’m just venting, it so hard watching her go through this.
On another note, Mia had her 1st birthday about 3 weeks ago (I can’t believe she is 1 already), I got the kids these silly glasses with different flowers and animals glued along the frame. My mother had to hold Mia’s arms so we could take a picture of her with these glasses on. She is still very stubborn about wearing glasses, even when they are pretend glasses.
For Little Eyes 
Your little Mia is so cute! She is one tough little girl and you are a wonderful mother working with her and that contact lens! I hope that you can find a contact lens that will not cause the problems that you have had so far so that Mia can learn to use both eyes! You have a lot on your plate! Maybe one day, Mia will get to like wearing sunglasses so that she can enjoy the outdoors as much as her brother can! Happy Birthday, Mia!
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HI! I just had to tell you how adorable your little Mia is.. I also have a daughter (now 7 years old) that was born with cataracts- they removed them at the age of 2 months and she wore contact lenses in both eyes from 2 months on..
She also had glaucoma in one eye when she was 9 months (I think) It all seems so long ago..
In any case.. we also had a problem at one point w/Ava (my daughter) rubbing her eyes and her contacts moving- one time I even put an extra contact in because the other had somehow moved to the back of her eye… resulting in two contacts. We also had several contact purchases because she would sometimes lose them, when rubbing her eyes.. I just wanted to reach out and let you know.. that although this can be very painful to watch and you feel so hopeless at times, it does get better. I was just thinking this the other day- I have 3 girls total (ages 7, 5 1/2 and 15 months).. It’s amazing how strong my 7 year old is and how going through the experience of her eyes has made her such a strong little girl. Now my 5 1/2 year old- who endured no eye issues or anything- I don’t even want to be on the same planet when she gives birth one day 🙂
Please feel free to reach out if you ever have any questions or need to vent.. Believe me- I understand! Diana
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Hi,
My name is Lynn, I have a little girl who had her right lens removed at age 4, and shes had to wear a contact lens ever since. We were devastated at first when we first found out, however, we soon learned how to insert the contact lens and my little girl was absolutely not phased one bit by all this. Her eyesight is still poor in her right eye, but up until December 2009, her eyesight in her left eye was perfect. Unfortunately, we have now been told that se has to have the lens removed in her left eye, as the lens has moved and is affecting her vision. I was distraught when I was told, and imagined the worst. I’ve been told that here eyesight in her left eye should return to almost 100% when she gets her new contact lens, so fingers crossed. Whats worrying me is the fact that at night, when we take the contact lenses out, and if she wakes up and needs to go to the bathroom, she won’t be able to see…..I’m hoping we can alternate taking out a lense from each eye each night, but I need to check with my doctors. Also, she absolutely loves swimming, so Ive been enquiring about these special goggles that contact lens wearers can wear..basically, I’m just wanting to chat with someone i a similar position, and any helpful advice you can give me, would be greatly appreciated.
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Thank you very much for this post. I love speaking with parents that have older children with similar eye problems as my daughter. I have a few, well actually more that a few questions. Did your daughter hit a stage when you had problems inserting her contact lenses? We are having a lot of problems inserting Mia’s regular contact lens, she wears a silsoft lens. I have no problems inserting her occlusion lens into her left eye, which is also silsoft, I just cannot get the other lens into her right eye. I feel horrible patching her left eye when she has such poor vision in her aphakic eye. She is also getting bigger and stronger making it more difficult. How is your daughter’s vision now? Did she have IOL’s or do you still use regular contact lenses? How did your daughter do with bifocals? Sorry, I have a ton of questions. Does she have to wear protective goggles when she is playing sports? How is her glaucoma? Is her IOP under control? Did she have a trab or a valve placed in her eye? Sorry, last question, does she have to use any type of low vision aides while in school?
Mia had an IOL implanted in her eye during her cataract extraction surgery when she was 1 month old. She is currently part of the IATS study and this is the reason why she received an IOL at such a young age. She began wearing glasses and patching when she was almost 2 months old and we have had problems with both patching and glasses since she was about 3 months old. We began using the black occlusion lens when she was 7 months old because she would not wear a regular patch. We tried everything, she would scream the entire 7-8 hours we patched her and she would continually remove her patch. She has done so great with the contact lenses, she will fight us when we are inserting her lens, however she leaves the lens alone once it’s in her eye.
Sorry, 1 more question, do you have any tips on inserting contact lenses? I currently place Mia between my legs so her head is between my lower legs, I place her legs and arms under my legs and I squeeze my legs together so she is pretty much in a leg vise-grip.
Thanks,
Danielle
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Mia is looking so cute. And you are a great mother of her. You don’t feel about that. Just meet your doctor and consult him.
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