I opened this picture of Elly and had a quick moment of panic. Since her 2nd surgery I have looked over all her pictures with a fine tooth comb trying to notice any changes in her eye position. I opened this picture and took a deep breath. Then I remembered we had a little Halloween event before the surgery… Phew. Although she only had her right eye operated on, her left eye has also looked straighter. So far, her brain is liking the new eye position. At this point, we are not seeing any of the crossing in as her eyes look in this picture (YEAH!!!!)
What do you do with these pictures? Should I save it? Do I just delete it? Suggestions please!
You’re getting ready to leave the hospital with your newborn. You look at your 2-day old baby and wonder, “where are her glasses? I can’t take her out without her glasses.” To be fair, you are a bit sleep-deprived.
My second daughter, Hazel, was born Oct. 15. Posting may be a bit light for a while.
Laura recently posted on the Little Four Eyes facebook group looking to connect with other UK parents. I know we have readers from around the world, so I thought I’d put the word out. You can reply here, or in her discussion topic on facebook.
Many thanks to Lindsay for sharing this story about her son Jack who has congenital cataracts. She blogs about his story at Jack’s Journey. -Ann Z
Jack was the picture of health for the first 2 months of his life. He hit all of his milestones on time, if not early. That’s why we were shocked to find out that he had developed congenital cataracts. There was no history of it in either of our families, and we hadn’t even heard of it. The pediatrician got us in with the pediatric opthamologist right away, and she quickly began to feel like part of the family. I’ll never forget that first appointment. I went alone with Jack thinking it was just another one of those “send ya to a specialist to cover ourselves” things by the pediatrician. I was overwhelmed immediately when she started talking about surgeries, and glasses and eyedrops. I felt like I had just been punched in the gut. As Jack slept soundly in his carseat, I called my husband crying from the lobby, not able to comprehend what I had just been told.
The 10 days between finding out and his first surgery were the hardest 10 days of my life. I felt so desperate to somehow make it go away. I felt like it was somehow my fault, or that the surgery was going to change my little guy. I was blessed with a strong support system and my husband and I had all of our parents there the morning we went to the hospital. When we handed him over to the anasthesiologist, all we could do was pray that these people understood that they held our life in their hands.
He came through the surgery like a champ. He was none too thrilled with the giant patch taped to his head for the next 24 hours, and it took an army to make sure it didn’t come off. My husband and I became experts at eyedrops and were so much more prepared for his second surgery 3 weeks later. After that surgery, Jack was able to wear his glasses right away. When you saw how much better he saw, you knew that all that pain and hurt you felt the past month was worth it.
Jack in his glasses
It’s amazing what people say when they see a 3 month old wearing glasses. I’ll admit, I would probably take a second look if I saw him as well. What hurt the most is that people thought I was putting them on him as an accessory or to look cute. I had no problem explaining why he had to wear the glasses. Jack is now wearing contact lenses in both eyes. They are a stronger prescription (-20 and -26) and keeping glasses on a 3 month old is as difficult as you would think!
Looking back over the past 6 weeks, I am amazed at how scared we were. Coming through it, you feel like you have grown a second backbone. We are blessed to have such a wonderful little guy like Jack who was stronger than anyone. He still faces lots of eyedrops, prescription changes and trips to the doctor. He’ll go back in for surgery when he is about 5 years old to receive his permanent lenses. (In children as young as he is, they have to remove the lens to get the cataracts, but cannot give him a replacement as his vision is still changing.)We are so thankful for our doctor and that people were put on this earth with talents and gifts like she has. We have been inducted into the stresses of parenthood rather quickly (Jack is our first), but we survived and we’re better for it!
This comment came in from Karen. I wanted to put it up as a regular post so that everyone can see it because it’s such a helpful and interesting story. Karen got glasses at 19 months, and writes about growing up with high myopia and glasses. – Ann Z
I am writing just to reassure some of you. I was diagnosed as a high myope at 19 months. My mother reported that she had questions about my vision at about 9 months old because I would run my nose along her blouse to see the flowers. She said she thought it was strange that I would cry when any furniture was moved. I would run my nose on the back of the “little golden books” to “find the doggie.” She actually used this as an example to show the pediatrician when he kept telling her all babies hold things close. When he saw this he changed his mind and sent us to a pediatric opthamologist.
I have had a stable -10 in both eyes since I was a baby. I was prescribed a little blue pair of glasses. I did not take them off when I was first fitted. My mother said I wore them all day from the beginning. The only concerns I, personally, had as a child were a fear of having a fire or tornado where I would lose my glasses (I felt helpless without them), wishing terribly that I could wear the cool sunglasses made for kids, and how to combat the incessant teasing at school because of the strong prescription.
I went into gas permeable contacts at age 11 and loved them from the beginning. I can see so much better than with glasses. When I first got contact lenses I thought our fish in our fish tank had grown because contact lenses do not make things look smaller like high prescription lenses do. I lost contact lenses a lot. I lost them playing outside, riding bikes, swimming, and skateboarding, but my parents, thankfully, kept replacing them. (A vision budget is a must). Contacts have been the best! If I could have had them earlier I would have, in a second. I have even had a couple of eye injuries from my contact lenses when I was hit with a tennis ball and when I got kicked while jumping on the bed. The accidents caused the contact to cut my eyeball, which did not cause anything more than a small cut. It healed fine, and I still wouldn’t trade wearing contacts for glasses. I have glasses, but only for when my eyes are resting from contacts. I have looked into Lasik which doesn’t look like an option right now. I have read that vision through gas permeable lenses is better than Lasik.
Keep in mind that even with a high myopia diagnosis kids can have a great time and will manage with the sight they have. And remember to buy them a pair of cool sunglasses!!
Many of you know that Elliana had eye surgery again this Monday. We were very worried about her before, during, and afterwards as she had such a difficult time adjusting to the first surgery.Although the surgery is routine for the opthamologists, she is our baby and we only want what is best for her. Due to her first reaction, they only operated on her right eye. In the best case scenario, her right eye will be straight after surgery and her left eye will stay straight – since it is her stronger eye. This is a picture just hours after surgery and her right eye is looking good.
She seemed to emotionally handle the surgery better this time around and appears to be recovering quickly. We tried to take a picture of her eyes on the day of surgery and today to show how they have recovered. Since it is the 2nd surgery, her eye was a little more swollen. The dr looked at it last Friday and thought it looked pretty good. We go in again next Friday and will remain optimistic that this surgery will continue to be a success.
Elliana is such a trooper. I am thankful every day to have her in my life!
What do you tell a 4 year old the second time around???
Well, she surprises me with what she remembers from the last time. She remembers watching the Angelina Balerena show on the TV, getting medicine and seeing the Dr in blue scrubs. She then remembers waking up with her musical bunny and something that made her mad in her arm (the IV) She also remembered they gave her a popsicle and that her eyes hurt.
So, we decided to get a little more technical. Unfortunately, we told her last week that she would have surgery, but then she had fevers… so there was some time of uncertainty between the two dates. After things were changed, we let her know not to worry and that we would tell her more when we knew the information (ie)today, the day before she was re-scheduled to go in. We explained that she was going to have surgery to help make her eye straight. We told her that we would go meet our DR at a different building and that she would have medicine to put her to sleep. While she was sleeping the Dr would help make her eye straight and when she woke up, she would be in my arms. I did make sure to tell her that there would be something on her wrist that she needed to leave it alone (since she was a little peeved that it was there and kept trying to rip it out) I’ll let you know if this worked.
Per Natalies suggestion, we expedited the book Blueberry Eyes to our home and were pleasantly surprised at how well the book explained the surgery on a non-scary kid level. Having done this once already, I was comfortable with all the terms and procedures. Elly’s will be VERY similar to the little girls’ in the book (book review to come later) My only problem now is that the book talked about her friends bringing her balloons and get well cards. As I tucked Elly in tonight, she said, “When will my friends be able to come bring me balloons? You know, the special ones with helium?”
Gotta love her! You mean buying the pudding already prepared in the cups isn’t enough… you want balloons? =)
A friend of mine has bad eyesight. I think it is -16 or -17 in both eyes. So, I was probing her with questions about her vision and the good and the bad. She is a very intelligent, beautiful woman who has made a successful career teaching literature at the collegiate level. One of the things she remembers as a child was HATING the eye doctors, so much in fact, that she did not tell anyone that she couldn’t see. She said that she gravitated towards books and a love of literature, mostly she believes because that is what she could see. Math for her was awful because she couldn’t see the teacher demonstrating problems. It wasn’t until third grade that she had her first pair of glasses. Her experiences with glasses were not the best and she recalled teasing and having trouble socially (I think things have changed in the last 20 years – at least I am hoping) For her, the ability to wear contact lenses changed her life. We talked for a while about other things, and then we got to talking about the really cool ways that bodies can adapt to make things easier. When she started horseback riding in college, her instructor pointed out that she held her body at a slight angle. It wasn’t until she was an adult, that she realized her best vision was at a slight angle. Her body naturally adjusted so she can see better.
It is nice to be able to talk and ask questions freely to an adult that articulate their difficulties and things they wished would have happened earlier. If you had the chance to talk to her (or someone else for that matter) what would you want to know?
I just heard about this contest, and wanted to pass it along as something that might be of interest to people here. Sadly, it’s only open to US residents.
Airwear® Lenses are polycarbonate lenses that claim to use eco-conscious processing in the manufacturing and packaging of the lenses. Since they are polycarbonate lenses (lighter, safer, and provide protection against UVA and UVB rays) , they are appropriate for children of all ages.
Airwear is currently running a contest that is open to US residents only, with a grand prize of $1,000, and 10 runner up prizes of $400 vouchers for Airwear lenses. To enter the contest just visit www.lightersafergreener.com (the Airwear website) and share a 250 word essay on how you will help your kids have a healthy, safe and successful school year. Don’t be thrown off by the “school year” part of the contest, I double-checked, and even if your child isn’t in school, you can still enter and be eligible to win. The contest runs until November 30, 2010, so you still have plenty of time to put together a winning essay.
It’s been some time since I last posted an update regarding my son Nicholas and his experiences with glasses and patching. N has ectopia lentis, a congenital condition that causes a laxity in the fibers that hold his lenses in place, as a result the lenses can move, or dislocate, from their proper position. This has led to a high degree of myopia as well as anisometropia. Anyhoo..after several years of success with patching to maintain vision to the best possible, we learned a several weeks back that the lens of his left eye has moved to a position where it is no longer providing useful vision. (He’s -8.5 R and -23L. Lately we’ve not been able to gain acuity beyond 20/200 L)
So..we’re gonna have it replaced. Huh?
I always thought such things carried a lifetime warrantee. Such is not the case it seems. Surgery is tomorrow. The surgeon will work to secure the supporting apparatus of the inner eye and hopefully implant an IOL “in the bag”, complex terminology for “right where it needs to be”. Otherwise, suspend the new lens in the place where the bag used to be, if things go differently. A new frontier for us to say the least.
I’ve written infrequently, but visit this site often, sharing and leveraging the collective experience of this community. Hoping those who may have had experience with surgery could share some tidbits of advice. What’s the post surgical period like? Luck with maintaing the protective cover in place? etc. Will see you on the flip side and let you know how it went. (personally..hoping he gets the one with the bionic sound effect…) 🙂
I have spent the last week trying to take tons of pictures of Elliana’s eyes. As some of you may have the same problem that I do, she does not like to 1. look at the camera and 2. have her picture taken. I did however get quite a few shots. My husband and I looked at them all and sent several to our PO for review and we went in to get measurements again. Even when she is looking straighter, her eyes still turn in. =( There is also a test where she wears glasses with red and green lenses and must explain what she sees. It was obvious that her vision was switching… 2 red, 2 green, 3 green, 2 red, 4 red, she kept switching colors and couldn’t see how many. When I looked through the same thing, I saw 1 red, 2 green , and a white (maybe someone can explain this test better)
As for the surgery, I understand that they are going to move her eye muscle on her right eye almost back to where it started out. I asked how far and the Dr said that they will have to see if the muscle slid and wanted to know if I wanted her to call me during surgery (no way, please don’t call me… I am not qualified in any way to give any opinion – just focus on my baby) They will only do one eye as Elliana had a very difficult time adjusting emotionally and physically to the change. I have to admit, I am more nervous and scared this time around. I am SO worried that this surgery won’t work too. Then what? I also feel so stupid sometimes and think that I should have gone to school to become a doctor or a surgeon just so that I would know more.
We did tell her that she will have surgery on Thursday. She wanted to know what “exactly” was going to happen. I said, “We will meet Dr. at Papa’s work. They will give you medicine to make you sleepy and so you don’t feel any pain. Afterwards they will take you to the back room to see the fishes and you will wake up in my arms.” She however was not satisfied with my answer. I guess I didn’t give enough details as she wanted to know more. So I explained that she did such a good job patching but that the Dr wants to help your eye out so she can see better. They will move one of the muscles on her eye. She was ok with this and then asked if we could go to the grocery store to pick out treats for afterwards.
Elliana’s eyes are totally different every day. Some days I look at her and think, WOW her eyes are so straight. Then, an hour later, her left eye will be completely inward and I can see the scar tissue from the last surgery. Or it will be her right eye inward. WHAT IS GOING ON? At this time, there is a possibility that we may delay our 2nd surgery scheduled for September 23rd. The last month we have had weekly appointments to try and get accurate measurements. Each visit results in different measurements. The only good thing is that each eye individually is measuring in the 20/50 range (YEAH!) I am so relieved that there may be a delay as I want Elly to have the least amount of surgeries possible. My heart aches and I have lost much sleep about what to do. The final decision will be made next week.
I was thinking about putting together a post about how to find places that not only carry frames for little ones, but that also provide excellent service for the many adjustments and repairs we need. It occurred to me that we’re lucky to live near a place that caters only to children, that came highly recommended by our PO and others.
How did you decide on the place to buy your child’s glasses?
Stella, back in May, on her first day with glasses. (She was 20 months old.)
Hello! I’m Amber. Ann recently posted about Stella, my little “fashion visionary.” She honestly does love wearing that “pirate girl” onesie! Stella very recently turned two and, in addition to wearing glasses and patching three hours a day, is two weeks into vision therapy. I’d love to share our vision therapy stories and hear about your experiences, especially with vision therapy for very young kids as it seems to present unique challenges.
First, let me explain how our path led to vision therapy. Treatment for her vision issues (first, accommodative esotropia and now ambylopia) began in April in the ER at Seattle Children’s Hospital. She’d been sick with a bad cold and had lost about a pound, and that morning I thought she’d bumped her head (saw it out of the corner of my eye–I wasn’t sure about anything but the screaming). That’s when both of her eyes suddenly started crossing–severely. Her pediatrician was visibly alarmed and sent us to the ER where they ruled out serious lie-threatening problems via head CT scan and tentatively diagnosed her with “convergence spasms.” A couple weeks later, we were routed to one of Children’s Hospital’s ophthalmologists. We now realize that the illness and stress must be what brought out Stella’s latent or, at the very least, hard to detect intermittent esotropia. I wish the ER had been aware that this was actually a rather common presentation, so Stella could’ve avoided all that radiation. Hindsight is 20/20. Unlike Stella’s left eye. Ahem.
After a very thorough exam, the ophthalmologist prescribed glasses, which have helped a lot in keeping her eyes straight. Then, at the follow-up appointment, they told us to start patching as visual acuity was decreasing in her weaker eye (her left eye has a stronger prescription which, from what I gather, means she has anisometropia). They said she may need to patch for years, but never mentioned vision therapy, I suppose because most ophthalmologists not only don’t offer it but aren’t very familiar with or approving of it. After reading Fixing My Gaze, I became dissatisfied with this approach for Stella and was excited to explore the possibility of vision therapy. Our second opinion came from a developmental optometrist who told me that Stella was too young for vision therapy. Luckily, we sought out a third opinion from a developmental optometrist who, among other seemingly innovative suggestions that differed from what we’d heard elsewhere, said Stella could begin vision therapy at this age! We now go every Wednesday morning to play “eye games.” The vision therapy guidelines they gave us initially say that most courses of vision therapy span nine to 12 months. Our journey is just beginning.
Dr. Nate at Bright Eyes News just posted a wonderful round up of some relatively recent studies looking at the effectiveness of different treatments of amblyopia. He includes short summaries of each study, written in plain English, along with links to the article in PubMed. There’s some great news in there: improvement can be seen in amblyopic children over 6 years of age being treated, and the benefits of treatment are permanent in most children, even after they’ve stopped treatment.
This is absolutely a must read if you’re dealing with amblyopia and want to be up on the latest findings!
For Little Eyes 