Insights: A 4Sight Blog

Last week, Charlotte’s preschool teacher, MK, told me a funny story that had happened while Charlotte was wearing her patch. It was the usual “potty time” for the class and most of the kids had finished doing their business. MK asked Charlotte to “go keep an eye on the boys in the hallway” while she finished helping the last kiddo wash their hands. Charlotte got a little grin on her face, pointed to her unpatched eye and said, “OK! I’ll go keep my ONE eye on the boys! Get it? Since I am wearing my patch?!?! Ha!”

Charlotte's Patch

MK thought it was (1) great that she understood the play on words at age four and (2) was able to make a joke of it. And so was I. It makes me so proud that Charlotte didn’t even think twice and found a way to add humor to the situation.

Charlotte still hasn’t really had any problems with the fact that she is “different” because she wears glasses and can’t see as well. I don’t think she realizes that there really is a difference. And at this age, her peers don’t really see the difference either – or at least they don’t see it as a negative difference. And while I am glad that is the case, it also saddens me to think how that will change as she gets older. Charlotte’s glasses and vision issues rarely impact her social interactions at this age. Kids don’t “see” differences so much up until school age. Knowing that will change as she gets into grade school breaks my heart. But I need to remember that she will face that challenge head on when she encounters it. I’m sure she’ll learn to use her clever wit to combat bullies. That may take a little training, I’m sure. But luckily, she’s got a good teacher who’s been through it.

How do you help your kids understand that what makes them different is what makes them awesome?

This morning, Charlotte woke up around 7:30, got out of bed, turned off her sound machine, put on her glasses, tip-toed into our room, and started rubbing my arm to wake me up. She said, “Good morning, Mommy,” went into my office, turned on the TV, and started watching cartoons. It made me think – wow, we’ve super lucky and we’ve come a long way.

I remember when she was about a year old and we were having a session with her physical therapist at our house. We were outside under a tree and trying to get Charlotte to play with the leaves that had fallen on the ground. They were crunchy and she didn’t like the strange texture to them. It took some time before she’d willfully scoop them up and not be scared of them. Apparently new textures can be difficult for visually impaired kids to handle. Charlotte’s vision teacher explained to me that kids with vision issues often use their hands as their eyes. So that could account for their dislike of strange textures but also could contribute to their tendencies to be delayed in their gross motor skills like crawling and walking.

We probably weren’t as consistent as we could have been at giving Charlotte more “tummy time” every day when she was an infant. I was always worried she’d lie on her stomach, rub her eyes, and either hurt herself or lose another contact. She did start crawling around 10 ½ months and was able to pull herself to standing soon after that. She would “cruise” along the furniture a lot, always keeping her hands on something. She finally took her first steps on my birthday when she was about 14 months old. I was thrilled! She mostly stuck to crawling for a while after that and finally gained the confidence around 18 months or so to make walking her main mode of transportation.

Again, her vision therapists felt this was because visually impaired kids can have a tough time letting go of using their hands to “see” everything on the floor. It can be difficult for them to adapt to relying on their legs to move them around. Charlotte must have liked using her hands as eyes when she crawled and cruised and needed a bit more confidence to fly solo. I still think her brain was too busy learning other things like communication and cognitive skills and so she was behind in her gross motor areas. But I am a bit biased.

She had only been really walking for a few weeks when we had a check up with the eye doctor at CHOP and she read the letters on the eye chart. The technicians were excited that she could read the letters at such a young age so they could get a more accurate visual acuity. But I was just thrilled she was able to see the chart at all! I’m convinced she learned her letters so well because we were always testing her vision: “Can you see the ‘K’? Where’s the letter ‘Z’?”

Now she’s 4 and I see her running around (clumsily sometimes), taking ballet class (not so gracefully), and doing well on things she used to be behind on. She’s caught up with her peers and is just like any other 4-year-old. Except she’s the cute one with the funny glasses.

Oh, just look how far we’ve come.

In an effort to protect Charlotte’s eyes from the bright sun, we’ve tried every trick in the book. Like myself, she is very light sensitive, or “photophobic”, and light can be very bothersome. Many kids with vision problems are sensitive to light and Charlotte’s photophobia stems from a number of different causes. First, her pupils are large and irregular and misshaped from her cataract surgeries. And because she has valve implants in each eye to help control her glaucoma, they can act as just another item in the eye for light to bounce around on. Another issue that she and I both deal with is the inability for our pupils to dilate or pin easily. So when we go into a dark room, like a movie theater, we can’t see anything but blackness for a while until our pupils can dilate and take in the light that is available. It usually takes me a good 20-30 minutes before I can really see in a movie theater. But the other problem is when we go out into the bright sunlight, our eyes have difficulty adjusting to the light. Our pupils have a hard time pinning so a lot of light floods our eyes which can be bothersome and painful.

Since Charlotte was around 3 – 4 months old, we’ve looked for ways to protect her eyes from the sun. The first step we tried was hats. We’ve tried every hat out there and have been given so many wonderful hats by family and friends. The key is to find a hat with a brim big enough to shade her eyes from the sun but not block her vision. This is a bit tougher in the winter because most winter hats don’t have any kind of brim. We’ve also found luck with baseball caps and visors.

When Charlotte was an infant and wearing contacts, the sunglasses that worked the best for us were Baby Banz. They’re not very expensive and protect the eyes well. What’s neat about them is that they don’t even have arms. Instead, they just have a soft elastic band that stretches around the back of the child’s head. Those worked great for us until Charlotte got glasses. They’re also great for kids without eye problems to protect their eyes from the sun’s UV rays.

So cool in the Baby Banz sunglasses (6 months)

When Charlotte first started wearing glasses around 15 months of age, we just tried using hats for a while. That didn’t seem to work well enough so we ordered a pair of sunglasses in her prescription. While they were effective, they were not very convenient. Switching her glasses every time we went in and out of the car while running errands was a bit cumbersome. Plus, her prescription changed so often when she was younger and the glasses were so expensive that it was not the best solution for us.

When she switched from her Mriaflex glasses to the Fisher Price brand (see last post Lenses Galore), we chose to not get prescription sunglasses. Also, we don’t have the option of utilizing “transition” lenses that get darker in the sun because of the strength of her prescription. Most people who need to wear glasses that replace the lens of the eye (usually removed during cataract surgery, for example), have very thick, strong glasses. Too thick for transition lenses to work properly.

Luckily for us, my mom found a great pair of “fitover” sunglasses. Essentially, they are worn on top of regular glasses. Unfortunately, because of the thickness of Charlotte’s glasses, clip ons and the like are not feasible. But the sunglasses that ended up working for us are made by Cocoon. They do not come in children’s sizes but we just ordered the smallest size available. And while they look a little large, they serve the purpose and are easy to use. (And luckily for us, oversized sunglasses are all the rage, so she fits right in.) Charlotte can pop them off and on when need be depending on the light and her comfort level. The Cocoon sunglasses are not inexpensive but they protect her eyes, are polarized to cut glare, and work well for us.

Charlotte's Cocoon Sunglasses

Hat and Cocoon sunglasses on an extra bright day

What tricks have you found to protect your kids from the sunlight? Can you share any good resources you’ve stumbled upon?

One of the most frequently asked questions we get at 4Sight relates to glasses and contacts for kids – especially infants. I can tell you what has worked for us – and we’ve tried a lot of different avenues to get the best situation for Charlotte. I always tell parents to check with their own doctor for the best option for their own child. But remember, if one thing doesn’t work, give it another chance and then try the next choice. You’re bound to find something that works!

Charlotte got her first pair of contacts when she was 3 ½ weeks old. They had to wait about a week and a half after her first surgery to ensure she was all healed up before they introduced contacts into the picture. It still blows my mind that she (and I) wore contacts at that age. We’d go to CHOP at least every two weeks to have them removed, cleaned, and reinserted. That was never a fun process. She had very “tight” eyes which meant they were deep set and it was tough to pry them open to get lenses in and out.

We had been told by our doctors that it was very important to get contacts or glasses for infants as soon as possible after cataract surgery. When a person has had their lens removed from their eye (from cataract surgery, for example), they are considered “aphakic.” Without a lens in the eye, or some way to focus pictures to be sent to the brain, they brain doesn’t “learn” how to see. Infancy is such a critical time for eye and brain development that it is vital to try to get the eye seeing as best it can so that you don’t run the risk of vision loss. Luckily for Charlotte, we got contacts in her eyes very early.

But the contacts did bring their own set of problems. Every kid is different, but for Charlotte, she had a rough time with her contacts. She often lost them or would rub them out. Her day care would call us and tell us they’d found another contact on the rug while vacuuming. We’d try to salvage any we could because they were so expensive. She also struggled with many corneal abrasions. It is easy to get a little speck of dust under the contact which can easily turn into a tiny scratch. Those tiny scratches are super painful so we made a number of emergency trips to CHOP. It’s key to get antibiotics for any abrasions to prevent infections – especially in kids that have such delicate eyes. I remember meeting our favorite fellow, Will, at CHOP on Thanksgiving morning when Charlotte was 4 months old because she had been screaming for hours with a really bad corneal abrasion. I say it all the time, but we are so lucky to have the great folks at CHOP on our side.

Finally after a while, we decided to try glasses. The abrasions and lost contacts were getting difficult so we switched to glasses. Charlotte was 15 months when we got her first pair. The brand was Miraflex and we got them through the glasses folks at Scheie Eye Institute. The Miraflex were great because they are indestructible plastic with no hinges and they really can’t break. They have an adjustable elastic strap that goes around the back of the kiddo’s head so we never had to worry about them falling off. Another brand that is also plastic with a strap is called Solo Bambini.

Charlotte's first day in glasses (15 months old)

Charlotte has done remarkably well with glasses. Some parents struggle with their kids keeping the glasses on. We’ve heard stories from parents about kids who won’t keep them on and take them off all the time. But we always remember what my pediatric ophthalmologist, Dr. Joe Calhoun, told my parents when I was little. He said, “If she sees better with the glasses on, she’s going to want to keep them on.” So my personal opinion is that if your kid keeps taking the glasses off, get the prescription checked. Kids WANT to see so they can play.

Now that Charlotte is a bit older, we’ve switched to Fisher Price glasses. They don’t have a strap but the arms have a soft cable that hooks around the ear to keep them on. We got these glasses through Dr. Scott Edmonds who is the Co-Director of the Low Vision Clinic and Contact Lens Service at Wills Eye. He has been taking care of my contacts and glasses for 20+ years and does a great job with kids.

Because Charlotte is doing so well with the glasses, we’ll stick with them until she gets to be school aged. Then we’ll think about trying contacts again. I can’t worry about that just yet – we’ll cross that bridge when we come to it!

What has worked best for your kid – contacts or glasses? Any good tips on how to get contacts in or out or how to find the best fit for glasses?

When you are a parent of a kid who spends a lot of time at the doctor’s office, you feel very lucky when you live 30 minutes from a place like CHOP. The Children’s Hospital of Philadelphia has been so wonderful to us for the last 4+ years and we couldn’t be more grateful to have such a world class facility just minutes from our home.

I have yet to encounter an employee of CHOP that I didn’t like. Every single nurse, front desk secretary, physician, custodian, food service worker, parking attendant, intern, volunteer, OR tech, child life specialist, and pharmacist I have met has been pleasant, helpful, and kind. They make situations that could be extremely difficult bearable.

One of the toughest experiences we had at CHOP occurred the day after Christmas this past year. It has been almost 8 months, but it is still fresh in my mind. We went in for another Exam Under Anesthesia (EUA). It was Charlotte’s 13^th trip to the Operating Room so I should have known it would be unlucky.

Including this trip, the majority of her procedures were just outpatient. Thankfully, the only time we had to spend the night was for her first surgery when she was 13 days old. Because she was so young and had to be under anesthesia for a good couple of hours, they definitely kept her overnight to monitor her closely.

If you’ve ever had the unfortunate task of taking your kiddo in for any kind of surgery, then you probably know about “Giggle Juice.” Many hospitals use giggle juice, or the medication, Versed, as a sedative for kids prior to their procedure. It’s often given in pre-op to help calm the child down so that when the nurses take the patient back to the OR, he/she doesn’t have major anxiety when leaving their parents to go with people they don’t know to what they think will be a scary event.

Charlotte has always done well with the giggle juice. She doesn’t mind taking medicine by mouth and always seemed to tolerate this medication well. She would get pretty tired and a bit loopy. My mom would say it’s as if she’s had two martinis. Jamie and I would feel bad when we’d laugh at her once the Versed kicked in. But she was just too darn cute – she’d laugh at just about anything and get the goofiest grin on her face.

Well, on December 26, she decided to exhibit some 3-year-old independence and did not want to have any part of taking the giggle juice. She had been kind of “off” all day, was on a bit of a high from Christmas still, and just wasn’t feeling like cooperating. She had just been in surgery two months prior to have a valve implanted in her eye and so I think she may have remembered her previous hospital experience a bit too well. My thought is that she was finally at the age where she was beginning to recall these experiences and associate parts of the hospital with bad feelings. That surgery two months before went smoothly and she recovered quickly, but she probably remembered the discomfort she felt waking up, the pain for a few days after, etc.

Nonetheless – no giggle juice for Charlotte. The nurses suggested that Jamie or I should just come back to the Operating Room with her to alleviate any anxiety she may have and hopefully, that would do the trick. I put on the scrubs they gave me and headed back with her and the nurses.

When we got to the Operating Room, it was a blast from the past for me – the smell, the cold air, the equipment. I didn’t feel nervous or tense being there at all. Even though it had been over ten years since I’d needed to be in an OR for myself, I’ve had enough surgeries that it didn’t bother me. Charlotte was fine, too, until they started the process of putting her to sleep. In our experience at CHOP, they usually put the kids to sleep first with a mask before they secure an IV line and then intubate. When they tried to put the mask over her face, she was having nothing of it. And I don’t blame her. When I was little, I HATED the mask. I called it “the balloon.” I remember, back then, it was a big black mask and it smelled like rubber cement. When they started to try and get her to sleep with the mask, I was close to her face and could smell that same rubber cement scent.

She fought them hard. They were so gentle with her but it took four or five nurses and techs to hold her down and keep the mask on her face long enough for her to fall asleep. When she finally did, I gave her a kiss, and headed out with the nurse. I hated seeing her fight like that and once we were out of the room, I just lost it. The OR nurse was wonderful. She knows our family well from us being there so often and she was very comforting. I knew the medical aspects of everything wouldn’t bother me but I wish I had reacted differently when they were struggling with her. After the fact, I can see that I wish I had been able to just stop everyone and made Charlotte focus on me. She easily gets overwhelmed when she’s overstimulated and she had a bunch of people trying to hold her down, put a mask on her, and get her to chill out. I know that if I had been able to be the only person she was looking at, she would have relaxed and done what she needed to do.

I calmed down by the time we got back to Jamie and was able to talk it through with him. Charlotte did fine in her EUA and everything went fairly well. However, she did remember the ordeal. On the way home and for a few days after, she’d talk about how the mask made her sick and made her have a sore throat. We made sure to talk to her about it and process it as best we could.

So lessons learned: (1) Make sure she takes the giggle juice! Not only will it calm her down for the mask, but it will keep her from fully remembering any struggle she might put up for the procedure. (2) Go with our gut and how we feel she would best handle those tough situations. Either way, I am glad she talked about it with us, that I talked about it with Jamie, and that we haven’t had to go back to the OR since then. But I know that when we do need to go back, we’ll do our best to make it as non-traumatic as we possibly can. We’re lucky to have CHOP to help us achieve that goal.

How do you handle scary situations with your kids? What are some of your proven tactics to help them (and you) cope?

One of the things I struggle with on a daily basis is my inherent desire to protect my kid. I grapple between wanting to hold her close or let her go.

The other day she was heading downstairs to get a toy. Seeing as though she has fallen the entire way down our hardwood staircase, I always get a little pit in my stomach when she is going up or down the steps. So in my usual manner, I told her, “Be careful on the steps, Charlotte,” as she was on her way down. She replied to me, “I know, Mommy. I’m always careful. Why do you always tell me to be careful?” I told her it was because I just worry. She replied, in her very matter-of-fact manner, “Well, Mommy, when you worry, it makes me nervous!”

So, of course, that got me thinking (again) about my tendencies to protect her. I must say I have come a long way and been much less protective than I thought I would be as a mom. But there are certain things that still give me that pit in my stomach. Through discussions about it with my family, we’ve come to the conclusion that a lot of it has to do with my own vision issues. Because I can’t see as well, I tend to worry when we are in situations where I might not be able to see her very well and be able to tell if she is safe – like on playgrounds or at the park. But I am learning that I need to remember that right now, her vision is better than mine. So she is probably just fine. I am also learning that she needs to fall down, trip on curbs, bump her head, and get skinned knees if she is ever going to learn to adapt to her surroundings. So, unfortunately for her, as I loosen the “leash,” she has been getting more bumps and bruises. Not really anything to worry about, but between me coming to grips with her just needing to be a kid and her desire to exhibit her independence, she’s really starting to explore the world a bit more. Which – in the end – is super cool.

How do you cope with the desire to protect your kids while also encouraging them to grow and explore safely?

Every blog I’ve ever read seemed to have a clever “first entry” opening to it. Usually some smart stream of words that eloquently captured how and why the writer planned to begin this great “journey” of their blog. I tried and tried but I just couldn’t come up with anything clever enough for the beginning of a venture like this. So here it is: the first entry for my blog.

Welcome to 4Sight’s blog: “Insights”.

Witty enough for you? Yeah, me neither.

Nonetheless, we (meaning the 4Sight Board) thought it would be helpful, supportive, and just generally a good idea to start a blog. Its purpose is to bring a personal, human perspective to everyday life with a visually impaired kid. Since I will be the main contributor to the blog, (me being Meghan, the President and a founder of 4Sight), you’ll not only hear a lot about Charlotte, our 4 year old, but you’ll probably hear a lot about me. If you know me at all, you know how much I like to talk. And if there is anything leftover at the end of the day that I didn’t get to spill to my husband, sister, mom, or friends, then the blog will probably bear the brunt of my tendency to talk, talk, talk.

But just as much as I enjoy talking, I like to listen just as much. So I encourage you, the reader, to respond to the blog entries. Whether you’re another parent raising a kid with vision issues, someone in my own circle, a doctor treating kids, a therapist, a friend, or just a random person that somehow stumbled upon our little corner of the internet, please feel free to comment and share your thoughts. That’s one of the main reasons why we started this blog, and why we started 4Sight for that matter. We want you all to not only connect with us, but with each other. There is no better resource than the experience of someone who has walked in your shoes.

So with that, I’ll leave you with the promise that I will try to (1) blog with a purpose, (2) not ramble too much, (3) rarely edit my writings, and (4) help and support in any way I can.

Oh and for the record, just because I married an English teacher doesn’t mean my grammar, spelling, or literary style will be anything marvelous. And just to warn you. I write like I talk – whatever that tells you.