I have updated the link in the sidebar, “How Lyra Sees” with the new longer version of the presentation.
Dr. Brian Evan’s updated presentation includes more than double the number of slides as the previous one. This has always been very helpful to share with friends and family members to explain to them how albinism affects Lyra’s vision.
🙂
I finally purchased some of the shampoo I had heard about to deal with Lyra’s “dingy“ hair. It’s called Shimmer Lights, and you can buy it from a beauty supply store, Sally Beauty Supply in my case. On the back of the bottle, it says the product “Brightens white and gray hair, Shampoos away yellow, and Tones down brassiness.”
It really did work quite well on Lyra’s hair. Her hair looks a lot brighter and whiter and clean and shiny. 🙂 It’s pollution free, at least for now.
One thing you definitely need to do the first time you use it, is dilute it a little. As you can see in the picture below, this shampoo comes out of the bottle in very DARK purple color. If you’re not careful, your child could end up with purple hair. I had to rinse Lyra’s hair multiple times to get all the purple out. For now, I am just going to use it on her hair once a week. We’ll see if that works to maintain things.
I just want to take a moment to say Thank You, to everyone who has ever left comments for me, either on my Guestbook or after individual posts. I can’t tell you how very very much I appreciate the those comments. Your comments have all been incredibly encouraging. It really motivates me to know that this site I created is serving the purpose for which it was intended…to help other parents. 🙂
Continue reading “Thank You, Thank You, Thank You”
One of the first things any new parent of a child with albinism learns, is that taking good photos of his/her child can be an unbelievable challenge. Why? Because of the red-eye effect caused by the camera flash. I was able to find a really great explanation for what causes that red-eye effect on the blog Photocritic.
After reading that and understanding why it happens, it’s easy to see why it’s even worse if the person has reduced pigment in their eyes. It’s not like the typical red eye you see in photos of people without albinism, which can be corrected with a red eye reduction program. Because of the lack of pigment in the eyes, the flash causes a much brighter and bolder red or hot pink color, not just in the pupil, but in the entire eye.
The brightness varies for each individual depending on the amount of pigment they have in their eyes. In Lyra’s case, if you try to use red eye reduction, it just colors her entire eye black. I’ve tried using Photoshop to manually edit her eye color, but it always ended up looking fake or cartoony. I’ve tried using the flash at various angles and distances. I’ve tried filtering and deflecting the flash. In the sequence of pictures below, see the second and third pictures, taken from 10 feet and from 20 feet away. Nothing helped to reduce the red eye. One option I had would have been to continue to use the flash and then just convert all of her pictures to black and white. I wanted color pictures of my baby, so I decide to give up flash photography all together.
Low light photography, especially indoors, is NOT easy for your average non-professional photographer. The first thing you realize after snapping a few pictures is that if the camera or your child moves AT ALL, you end up with something resembling a Monet. You can see an example of this in the first picture below. In my opinion, to be able to successfully take pictures in low light you really must have a digital camera, because you will likely need to delete the 75% that turn out blurry. Having a really good digital camera is nice, but knowing how to use it is even better.
After doing my research, I learned that 2 of the main things you need to understand as far as camera settings, when dealing with low light photography, are aperture and shutter speed. I don’t know this stuff as well as I should, but basically aperture deals with the size of the opening where light enters the camera and shutter speed affects how long that opening stays open. It can all be very confusing and annoying overall. Having a really fast shutter speed is good, but not TOO fast or not enough light will get in and your pictures will turn out dark. Other times I’ll finally get the shutter speed nailed down, but then I’ll have the aperture setting too low and my pictures turn out too bright and discolored. You just have to find a happy medium.
The BEST place to take no-flash pictures is outside. Unfortunately our babies/kids are very light sensitive and usually we like them to have their eyes open when we take their picture. 😛 When Lyra was really little, she rarely EVER opened her eyes outside. Now, in the evening after the sun goes down or on a really cloudy day, she’ll keep her eyes open. The last 2 pictures in the sequence pic below were taken at dusk. She squints a lot outside, but her eyes are definitely open.
When I take her picture inside, I have to turn on every single light in the room and open the curtains, but if she moves even a little, we end up with blur. It would be helpful to have a tripod as well. Even when I don’t feel like I’m moving the camera, I know there is some subtle movement or even just vibrations in my hands. The first picture in the sequence below was taken inside just before the outside ones, so because it was dusk, I didn’t get much light coming in from the window.
Overall, I prefer the way the coloring turns out in pictures taken outside compared to no-flash ones taken inside. One of these days I will buy myself a better camera and then maybe a year later I’ll figure out how to use it. 😛 My photography skills have improved significantly since Lyra’s newborn days, but I can always do better. Here is a helpful article with a lot of information and tips for low-light photography: No-Flash Photography In Low-Light Situations
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Heather, Lyra, and Dominick bowling for NOAH’s Bowl-a-Thon
Okay, so not EVERYONE in Kansas City participated in the 2008 NOAH Bowl-a-Thon yesterday, but the ones who did, had a really great time! I’m terrible when it comes to event organizing, but I’m a pro at procrastinating. This year our bowl-a-thon team had a total of 8 team members, including our 5 family members. 😀 That’s 2 more than we had on last years team…so I’ve made progress. Unfortunately, one of our team members, 5 year old Mark, came down with a cold and stomach flu on Saturday, so he and his mom Debbie were not able to make it. 🙁 We were sad they had to miss it, but hopefully we’ll be able to get together another time. Heather and I talked about planning a local NOAH picnic or something this summer.
Even though the actual bowling is over, we still have a couple of more days to continue fundraising. Yay!!! So this is your last chance to help us out. 😀 I should have posted this weeks ago. Live and learn I guess. If you’d like to help out, please click on the link below to donate and help Lyra in NOAH’s 2008 Bowl-a-Thon. You’ll have the option of donating anonymously if you prefer not to leave your name.
Click Here to Donate/Sponsor Lyra
Once you get to the website, click on the link that says “sponsor me.” You can see more bowling pictures in the Photos section of this site.
Thanks.
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These are the kinds of things that Daddies teach their babies… You can never have too many videos of Lyra. : ) This is her showing off her new trick; and then later, just plain showing off. Here are the lyrics to the song she is attempting to sing. It is our special version of ‘Row, Row, Row Your Boat’ that we learned from Lyra’s teacher, Miss Kim.
Row row row your boat
Gently to the shore
If you see a lion
Don’t forget to roar…ROARRR!Row row row your boat
Gently down the stream
If you see an alligator
Don’t forget to scream…AHHHH!
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Lyra’s hair has started looking rather dingy. I can think of no other word to describe it. YES, I do wash my child’s hair. I just don’t think the baby shampoo is going to cut it anymore. Her hair just has this slight yellowish/grayish tint to it lately. I know it’s not her hair gaining pigment, because its hair all over her head, not just hair closest to the roots. In fact the dingiest looking part of her hair is the hair in the middle and on the ends. It’s kinda gross. 😛
I’m going to have to research this a little more, but I vaguely remember reading something on the NOAH forum about hair absorbing pollution. Yucky! I hate to use some hardcore clarifying shampoo on her hair, because even though she’s got white polluted hair…she still has soft baby fine hair and I don’t want to damage it or dry it out. Hopefully I can find a shampoo that is both powerful yet gentle. Then we’ll just have to go make ourselves a shampoo commercial. 😀
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Although I haven’t been that vocal about it on this site, albinism awareness is something that is extremely important to me. One topic in particular that I have very strong opinions about is how albinism is portrayed on TV shows and in movies. I will educate everyone I know or ever meet in the hopes of making life a little easier for Lyra and other children with albinism.
Some people argue that the treatment of albinism in movies and on tv is no different than any other condition or disability. That’s not true. There are some movies out there that inaccurately portray other conditions/disabilities, but for every inaccurate portrayal, you can find a movie with an ACCURATE portrayal of that same condition/disability. That’s not the case with albinism. With the exception of the movie The Albino Code, written and directed by NOAH member Dennis Hurley, there are no movies out there that present an accurate portrayal of a person with albinism. This has been the largest contributing factor to society’s overall lack of understanding of albinism and false perception of “albinos.” The characters with albinism people have seen in movies have ALL been negative; evil, scary, freakish, mentally challenged…the list goes on. Can you IMAGINE if someone tried to make a movie about an evil character with autism…or a freaky mutant with Down Syndrome? That would NEVER happen, because it’s WRONG. Why is it okay with albinism?
It’s NOT okay!!!
Please view my slide show:
Make an on-line slideshow at www.OneTrueMedia.com
Thank you to all of the parents for sending me pictures of your beautiful children. I couldn’t have made this slide show without your help. 🙂
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I was at my dentist’s office making a payment with Lyra a while back, and there was an older woman finishing up about the same time as us. She had been staring and making baby talk/saying Hi to Lyra for a few minutes. As we were walking out, me pushing Lyra in her stroller, the lady followed outside. Once outside I bent over to fix Lyra’s sun hat. The lady bent over to talk to Lyra and in her best baby-talk voice, said “What are you?” EXCUSE ME… At first I thought I MUST have misunderstood her, but then she said it again, “What are you?”…and AGAIN 2 or 3 more times! ARE YOU KIDDING ME!!! SHE’S A BABY, YOU IDIOT! WHAT THE HECK KIND OF QUESTION IS THAT!?!
Anyway, I was SO STUNNED after hearing these words come out of this woman’s mouth, that I just stood there…speechless…and then walked away. I was really kicking myself later that day for not saying anything. I should have at least given her one of Lyra’s cards.
There’s always something new. 🙂
Feel free to add more “Dumb things people say” in the comment section if you like.
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