Author: Mashawna Thompson
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Sun and Skin Protection
Product Recommendations, Tips, and Resources
Less is more when it comes to the number of ingredients in skin care products.
– Ingredients like zinc oxide, titanium dioxide or Parsol 1789 offer the best sun protection.
– Recommended brands include Vanicream SPF 60, Neutrogena SPF 55 or 70, Neutrogena Sensitive Skin SPF 30, and Total Block. (Although Total Block needs to update their website with an accurate and more current description/definition of albinism)
For dry skin care (recommended by dermatologist)
Soap
-Dove for Sensitive Skin
-Cetaphil
-Oil of Olay
-Vanicream
Moisturizer
-Aquaphor ointment
-Vaseline ointment
-Vanicream
-Eucerin cream
-Cetaphil creamDetergent
-Tide Free
-Cheer Free
-All Free and ClearDiaper rash
-Triple PasteTips from Dermatologist
-Sunscreen should be worn on sunny and cloudy days and all year around.
-Reapply during prolonged sun exposure or after swimming or heavy sweating.
-Avoid sun exposure during 10AM and 4PM.
-Wear a broad brimmed hat.
-Wear sunglasses.
-Wear sun protective clothing. (See list below)
-Protect skin from sun coming through windows at home and in your car. (See list below)
-Sit in the shade whenever possible.
Sun Protective Clothing Resources
UV Sungear- http://www.uvsungear.com/dar106.html
Solar Eclipse- http://www.solareclipse.com/
Sun Togs- http://www.sun-togs.com/page.home
Home/Auto window tinting and shades
North Solar Screen- http://northsolarscreen.com/index.html
Llumar Window Film and Window Tint- http://www.llumar.com/
Industrial Shadeports- http://www.shadeports.com/
Other Great Resources
Protect-a-Bub- http://www.protect-a-bubusa.com/index.shtml
One Step Ahead- http://onestepahead.com/home.jsp
They have a variety of products for babies and children, including many for sun protection.
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Vision Skills
4-3-07
Today Lyra and Miss Kim, her “teacher of the visually impaired” worked on putting on and taking off stars on her star stacker toy. She is pretty good with the taking off, but not so coordinated when it comes to putting them back on.
We also read some books, encouraging tactile exploration. She did some good looking at the pictures, but she seems to be much more interested in turning the pages and eating the book. Kim suggests we try to get her to explore the various textures of touch & feel books. We need to get some more touch & feel books or just make 
our own.
One of our favorite activities with Miss Kim is playing with our box of stuff. Its just a small orange box that we filled with various toys/objects. We work on taking out and putting in, identifying or finding objects by name(“Where’s the duck?”), uses of some of the objects(hairbrush, telephone), and anything else we think of. We keep the same things in the box all the time.Here is what we have in it: ball, book, duck, egg shaker, baby, two green blocks, sunglasses, hairbrush, telephone, shoe, and a binky.I think that’s all. I think she is saying “duck” when she pulls that out, but its definitely debatable.
Today Lyra was able to follow a ball across the room 
and retrieve it twice. Yay!!!!!
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First Visit To a Dermatologist
On March 27th, Lyra had her first visit with a pediatric dermatologist. The doctor provided a lot of great advice and suggestions and showed a lot of expertise in the areas of skin care and sun protection for a person with albinism.
However, I was extremely disappointed by her lack of general knowledge regarding albinism. She asked me how I knew Lyra inherited albinism from me and my husband.
Does she not know albinism is a genetic condition and the ONLY way Lyra could get oculocutaneous albinism is by inheriting it from me and my husband because it is an autosomal recessive gene. The only type of albinism that isn’t autosomal recessive is a form of ocular albinism that is X linked. You can’t “get” albinism any other way…its not leprosy.
Also, she asked me if Lyra had any hearing problems, because “sometimes people with albinism have hearing loss.” WRONG!!!!!! This is SOOOO incorrect. I wasn’t sure at the time she said this, but I’ve done my research. The only condition even related to albinism, that does include hearing problems, is called Waardenburg syndrome. In the definition, it is referred to as “partial albinism” and it is an AUTOSOMAL DOMINANT condition. There no forms of oculocutaneous albinism in which hearing is affected.
If this dermatologist did happen to treat a person who had albinism AND hearing loss, then the hearing loss was caused by some other condition…not the albinism.
Parents of a child with albinism have enough things to worry about without someone telling them their child may have hearing loss.
Lastly, she referred to Lyra as having pink eyes. Now I know sometimes when the bright lights are shining directly into them, they my APPEAR pink, but Lyra has BLUE EYES! This is a huge pet peeve of mine. There is no such thing as pink iris color.
She is a doctor and should know this.
She did refer me to NOAH, which I am already a member of, but I think she needs to visit their website and do a little homework.
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Strabismus Surgery Success
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| Before | After |
Lyra’s surgery went very well. I think she did better than I did. The surgery itself only took about 40 minutes and then she stayed in the recovery room about an hour. That was a really long hour for me to wait. I didn’t think it would take so long for her to wake up. We were home before noon. It’s amazing what they can do with outpatient surgery these days.
Her eyes weren’t as gross looking after surgery as I expected. The inner whites of her eyes were bloody, but it wasn’t constantly dripping or oozing blood or goop. Her eyes never got so crusty that they were matted shut. Her recovery and healing has been fairly easy. The pictures above are from a week before her surgery and then 2 days post surgery. They look pretty straight to me, at least for now. I hope they stay straight. I am constantly checking to see if they start to cross again.
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Her post-op check up with her pediatric ophthalmologist was a week ago. Dr. Grin said Lyra’s eyes looked good and were healing properly. She will go back in about a month for another check-up.
I Hate Sunscreen
Putting sunscreen on Lyra so much is a big pain in the butt. Only because I’ve been lazy and careless in the past. I have never been real consistent in putting sunscreen on my oldest two children or myself. I should have been. If I had put sunscreen on them more regularly, it wouldn’t seem like I was constantly putting it on Lyra now.
I would never take her out without sunscreen. I know I just need to make it a habit. Right now its still an annoyance and I’m being selfish.
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It’s A Go For Strabismus Surgery
Lyra will be having bilateral strabismus surgery next Tuesday, March 13th. Both of Lyra’s eyes cross inward. The purpose of this surgery is to straighten her eyes. By improving the appearance of her eyes it will hopefully improve her psychological and emotional development. The realignment of her eyes may also improve her depth perception and improve the likelihood of developing equal vision in both eyes. The following is from an information sheet given to us by Lyra’s pediatric ophthamologist, Dr. Trudi R. Grin called “Understanding Eye Muscle Surgery.” This explains the surgery:
” Eye muscle surgery involves re-positioning the muscles that attach to the eyeball. It is similar to releasing the tension upon reins to a horse’s head in order to control the horse. Muscles are attached to each eye to pull the eyes up, down, left, or right. Surgery to these muscles strengthens or weakens their functioning in order to straighten the eyes. This is done by putting a suture into the muscle, then cutting the muscle off of the eye and re-sewing the muscle at the appropriate position, which in turn strengthens or weakens that particular muscle.”This surgery was originally scheduled for February 27th. We chose to reschedule the surgery after we decided to have some blood testing completed first.
We did not take Lyra to have genetic testing after she was born to determine which type of albinism she had. At the time it wasn’t a priority. We knew we weren’t planning on having anymore children and it wouldn’t have affected how we cared for Lyra. During our planning and preparation for her surgery, we remembered there was one type of albinism, Hermansky-Pudlak Syndrome (HPS), that included bleeding tendencies. We hadn’t seen any symptoms such as easy bruising or prolonged bleeding that would give us reason to suspect HPS, but because we didn’t have the genetic testing, we couldn’t know for sure.
We still don’t know the answer to that question, but we do know that Lyra doesn’t have a bleeding disorder. Because of the time frame necessary to get an appointment and complete genetic testing, we decided to take her to a hematology clinic to test specifically for any bleeding tendencies. A genetic test alone would tell us if she had HPS, but we would still had to of had the blood testing to determine if the platelet dysfunction was present. Similarly, just because all of her blood tests came back normal, this does not tell us she doesn’t have HPS. Because of the risks involved with surgery, obviously testing for the bleeding tendencies was the priority. We plan to schedule the genetic testing after her surgery, hopefully within the next 6 months.
This surgery is an outpatient procedure. We have to be at the hospital by 6:45AM and the surgery will begin approximately an hour after we arrive. They said the surgery should last 45 to 60 minutes. After the surgery, she’ll need to stay in the recovery area anywhere between 30 and 60 minutes, hopefully no longer. After that she will be able to go into a “post-op” room where we can finally be with her again. They told us that assuming everything goes well, we could expect to leave the hospital before noon. Pain after this surgery is usually mild, but we may need to give her Tylenol or ibuprofen for the first day or so. Eye care following the surgery is fairly simple…basically just keeping them clean and free of crusty gunk. “Blood-tinged fluid will ooze from the eyes for a day or so following surgery.” Yipee! Doesn’t that sound like fun.
Yuck!!!
I’m not really even too worried about the actual surgery. I’m worried about her being put under general anesthetic. That’s what scares me. I know I’m going to be crying my eyes out when I have to hand her over to the nurse. It’s going to be an agonizing 1-2 hour wait. I can barely type this without crying. All I can do is pray and know that I’ll be leaving her in God’s hands.
She’ll be safe.
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Dominick
Dominick is 5 years old. Dominick is my sweet baby boy, definitely a mama’s boy. He is laid back and untroubled, witty and random. Until recently he hasn’t really asked questions related to Lyra’s albinism. When she was born, we talked to him about it, but not in great detail. He was 4, so he didn’t really understand what it all meant. He knows to help keep the sun out of Lyra’s eyes and that she has teachers come work with her at home and she doesn’t see as well as he does, but he’s never asked why. I’m sure everything has affected him and his behavior to some degree, but not in obvious ways. He’s just the type of person that doesn’t worry about things. He gets that from his daddy. I’m so jealous. I take all of their worry, and then some.
The other day, Dominick noticed Lyra’s nystagmus. He was truly impressed by the “trick” that she could do with her eyes. He wished he could do it. He was so cute. He thought the eye twitching was a voluntary movement. I tried to tell him that Lyra wasn’t really doing anything, that her eyes did it on their own, but no way. He was convinced it was her cool trick and he was going to learn how to do it too.
Lyra’s teacher recommended, in the future, tell him that her eyes just work differently than ours work.
Occupational Therapy Goals
Today at Lyra’s OT session, we began updating her IFSP goals/outcomes for the next 6 months. These are what we want Lyra to be doing somewhere between now and when she is 16 months old. We really just got started with updating these today. We may add some goals in these areas and we still need to set some for cognitive skills and self-help skills. These are not necessarily in any order and we will check them off as she reaches the goals.
Motor Skills
-lower self from furniture
-cruising
-stand independently momentarily
-walks forward, 2 hands held
-walks, 1 hand held
-stand alone well
-walking 2-3 steps independently
-creeps upstairs
-roll ball back and forth
-pick up small object with neat pincer grasp
-isolate/point with index finger
-put objects into container (voluntary release)
-builds 2 cube tower
Social Skills
-waves/responds to bye bye
-babbles with inflection
-imitates familiar gesture
English