Saturday, May 30, 2009
Tonight she was giving me a hard time about going to bed. You know, the usual - afraid of the dark... routine. So, I caved and put on the Tinkerbell movie and let her watch it. She drifted off with her glasses on.
Friday, May 29, 2009
Well, today when I picked her up from preschool her "new" teacher (her teacher she had for the bulk of the year went out on maternity leave), told me... "She was running around chasing the boys to "scare" them and pretending to be a One-Eyed Monster. She has such a great attitude about wearing her patch".
I was pleased to hear this because in the beginning we had many man tears about having to go to school wearing her eye patch. And, I laughed because this one-eyed monster scenario is straight out of a scene from The Patch - a great book about a little girl with Amblyopia. Belle has been patching now for 3 months - and while it has gone by quickly the days are long when she is complaining, crying, falling down, and telling me that "she looks ridiculous" and "everything looks blurry". I know that it is hard for her, it is hard for me too. But, it will be worth it in the end when she is able to see with both eyes.
To think that my pretty little girl relates in some way to a one eyed monster makes me a bit sad. Yet, I am thrilled beyond belief that she is able to make light, find humor, or at a minimum - find some fun in it all. If that means she runs around chasing and scaring boys pretending to be a One Eyed Monster.. a one eyed monster it shall be. A very pretty one, at that.
Relating to a one-eyed monster, can this possibly be a good thing?
The Patch - Book helps little girls wear eye patches
Thursday, May 28, 2009
The goal of this program is to eliminate Amblyopia or "Lazy Eye", the leading cause of permanent vision loss in childhood.
For more info:
It was there that I read about Carissa's successful journey with Amblyopia and checked out the patches that her mother designed.
About the Patches:
Pumpkin Patch Eyeworks sells 2 kinds of patches, a tie-on "pirate" style and an over the glasses style of patch. Since my daughter wears glasses, this is the style that we use. The style of the patch is similar in design to other patches we have, like Patch Pals, with a few key differences.
- Pumpkin Patch Eyeworks patches are made from machine washable "every-day" type of fabrics like denim, faux suede and velveteen. Colors include denim, dark denim, white denim, tan faux suede and more. While some of the decorations may be more flamboyant or attention grabbers these patches are designed to be subtle. Custom orders are welcome.
- Patches can be secured to glasses via 2 tiny slits on the patch - one for the nosepiece and the other for the earpiece (bow). This prevents the patch from slipping and helps prevent peeking. Pumpkin Patch Eyeworks patches are "ophthalmologist approved"
- Many/Most of the patches are made with flippable designs so that they can be used on either eye should a child need to alternate between patching right/left. For optical centers wishing to keep an inventory of patches this is also a plus.
- Patch sizes: Small child size (1 3/4"), standard size (2") and large adult (2 1/2"). Currently their webstore needs to be updated to reflect these sizes, but until then, a customer can go ahead and order online (which would normally be given a standard size-2") and then email to indicate they need a different size. Most are priced at $10 with a few extra speciallly adorned ones for $12/patch.
- Coordinating patches can be made for 18" dolls and bears. These smaller patches are $7 - she even sells the glasses too ($5).
- Shipping and handling is done on a sliding scale based on your order total. For orders up to $30 it is just $3.50 (w/in the US)
Lisa at Pumpkin Patch Eyeworks was a pleasure to deal with and asked for the measurements of my daughter's glasses in order to assure we got the right size patch for her. Belle is in the "small size child" 1 and 3/4" patch which is slightly smaller than the Patch Pals. Even 1/4" makes a huge difference in that it doesn't cover up her face as much or get in the way.
Both our patches are flippable in that the design would work on either eye. In Belle's case, at this time she is only patching on the right side but should she need to start patching on the left we could use these same patches without the picture being upside down or backwards.
She also sent an extra patch that matched (in the same size) for her Build-A-Bear buddy. When I showed her that her bear, Pink, could wear a jeans patch too.. she loved the idea. It has served as an incentive to get her to patch more than a few times. Her bears glasses don't have a nosepiece so we only secure it using the slit on the side - it does slide a bit but I don't need to worry about the bear peeking. I've caught Belle doing "pretend play" that her bear is cheating.
One thing that is nice about the denim material is that it is really durable - it doesn't pill and it is kid-friendly. Belle is famous for eating spaghetti and needing to go in the bath afterwards - no matter how neat she tries to be it is just very tricky for her still. She tries to tell me that she needs her patch off to eat because she doesn't want to get it dirty but should she get this patch dirty it washes up! The edges are treated so that the denim doesn't fray. Some may find the denim a bit stiff, especially at first - but like "your favorite pair of jeans" it softens up over use.
Of the 2 patches we have from Pumpkin Patch Eyeworks, my daughter leans more toward the patch made of tan faux suede (it has a pretty purple flower embroidered on it) which isn't a stiff as the denim. Those who find the denim too stiff could opt for a faux suede of velveteen patch made with the same high quality. My daughter didn't find the denim too stiff at all but she prefers the softness of the faux suede. This patch also fits her well and she cannot peek with it when I have secured it to her glasses using both of the buttonholes.
For more info and to order: http://pumpkinpatcheyeworks.com/ or http://lazyeyepatches.com/
Wednesday, May 27, 2009
When people see my daughter wearing a patch they will ask if she is "cross eyed" or has a "crazy eye". When I tell them she has a Lazy Eye, it is often assumed this is the case. She does not have Strabismus, Exotropia or Esotropia.
Strabismus: Misaligned Eyes
Exotropia: Eyes that turn outward
Esotropia: Eyes that turn inward
When you hear the "term" Lazy Eye you may associate this with an eye that floats or wanders or turns (inward or outward). These conditions are not the same as Amblyopia (true Lazy Eye) but they may exist co-morbidly, or lead to amblyopia.
What is Amblyopia?
*** I am not a doctor. I am a mother. I am going to describe this in simple terms that anyone can understand ***
Amblyopia is a neurological. The short of it is that the brain is favoring one eye over the other. Vision in the non-favored eye becomes suppressed. Over time it can lead to blindness/loss of vision in that eye.
Types/Causes of Amblyopia:
Strabismic Amblyopia - This is when Amblyopia occurs as a result of a physical condition of the eye (i.e. Strabismus - Exotropia - Esotropia).The type of Amblyopia that my daughter has is Anisometropic Amblyopia.
Refractive or Anisometropic Amblyopia - This is when Amblyopia results from a refractive error between the two eyes. Even more simply put, the two eyes have differing prescriptions. The eye with the "better" vision (closer to 20/20 prescription) will typically become the dominant eye while vision from the other eye is "turned off".
Amblyopia can also result from a physical condition like cataracts, eyelid droop, or an eye trauma.
Tuesday, May 26, 2009
Enough that I started a thread on the DISboards called "Wearing an Eye Patch at Disney", which I like to frequent before we head to WDW to dish about the dining and other trip strategies. If you are taking a trip to Disney you definitely need to check out the DISboards before you go.
I think that even though it is vacation, I want her to wear her patch at least for a few hours each day and try to get that patching time in.
I guess that makes me a really mean mom since some feedback I'm getting is more of the - one week won't "hurt" - just take it off and enjoy vacation.
Things that concern me include:
- Comfort: Patching in the heat
- Keeping her Safe - she falls down alot and also is very afraid of the dark
- The idiot comments - especially given the prevalence of Pirates at Disney.
- The Pictures :( Is it wrong of me to want her patch off for the pictures? I know a part of me says, keep it on and she can look back on this when she is older.
- The 3D Shows - Several attractions are 3D shows - I recommend this thread "Experience with 3D shows & Monocular vision".
How do you handle Patching while on vacation?
Please Share your experience with Amblyopia and Patching at Disney.
Saturday, May 23, 2009
Amblyopia in March of 2008 just before his 4th birthday. I had planned to get him in for his first routine eye exam when he turned 3 but I figured he had great eyesight so kept putting it off. About 2 months before I booked the appointment I noticed that he occasionally would cross his left eye. He would stop as soon as I said something to him and he seemed to just be having fun with it and didn’t do it very often. I should have realized then that there was a problem as both my mother and younger sister had eye surgery before their 3rd birthdays because of a crossed eye. They both had poor vision in both eyes though so even as small babies it was obvious that they couldn’t see. So I assumed that since Jake could do jigsaw puzzles from a young age quicker than the adults and would shout out the different street signs etc in the distance while I was driving that he didn’t have vision problems. Boy was I wrong.
Jake’s first eye appointment is still hard for me to think about. The Optometrist started with covering one eye and Jake passed with flying colours. I breathed a sigh of relief thinking, “I knew he was fine”. Obviously I had my doubts though or I wouldn’t have been so relieved. Of course it doesn’t end there. Next she covers his other eye and he can see the biggest picture fine but when she goes to the next line he just sits there. I could see him struggling to see and his eye started to cross and he tried to peek around the paddle she was holding on his good eye. My heart broke at that moment. It was painful to watch him struggling. I asked how could I not have noticed he couldn’t see out of one eye!? She said it’s because he sees perfectly out of his other eye. It didn’t make me feel any less guilty but it did explain it.
So began our Amblyopia journey. His first pair of glasses arrived on his 4th birthday. We started patch therapy a month later. We’ve been going for regular visits to the Optometrist for a year now. He is starting to see better out of his poor eye! He no longer says that he can’t see when he has his patch on and he even forgets that he has it on. We upped his patch time the last time we were in so now we’re doing 3 – 6 hours per day and I think it’s helping. He has his next appointment with the Optometrist on June 18th and I’m excited to see if he’s improved as much as I think he has. We’re also scheduled to see an Ophthalmologist at the Children’s Hospital in our city on July 23rd to make sure we’re doing all we can for him and to see if he’ll need surgery at all. We don’t think he will, as he doesn’t seem to be crossing it anymore but our Optometrist thought that he still was a bit when she covered his good eye.
I still feel guilty about not catching it sooner but I have HOPE now.
You can read more about Jake's journey with Amblyopia at his mom's blog: Random-Stuff.
Friday, May 22, 2009
You know, the people who come up to my daughter and I, when we are minding our own business, and make a comment about my daughter's eye patch right in front of her.
Winners that I hear a lot of include:
- Did she have surgery on her eye?
- Aw.... what happened to her eye?
This one made me want to punch someone:
- She is so cute, it is too bad she has to wear that patch.
Then there is the lady on the sidewalk at school drop-off who apparently DID have to patch her older child when they were a toddler. She told me that:
I shouldn't be patching Belle at school and that instead I should patch her for an hour or two at home when she is in front of the television. She said that her eye doctor said the best thing she could do is watch TV with the patch on.
I just don't think so!
Thursday, May 21, 2009
The concept of Dr. Patch is a re-usable film, kind of like contact paper that you cut out and stick to the actual lens. It is sold in a kit - with instructions, the designs, cling film, and a glossy bookmark (to store patches on betweeen use). The "kit" comes in 2 varieties: "Frisky" (fun kid-inspired graphics) or "Designer" (funky patterns) with 6 patterns each for $19.99. Depending on the size of your lens is how many patches you will get from the kit - larger lenses would be 1 per pattern block - smaller lenses (like my daughters) will yield 2 patches per pattern.
Our Dr. Patch Experience:
Belle received the "Frisky" pattern set which are brightly colored animal graphics. I thought the designs were fun, funky, and appreciated the vibrant colors. I showed her how they had animals wearing glasses and/or patches. I really liked the pictures, you can tell that a lot of time and thought went into creating them. I do wonder a bit about the sizing though (read on...)
My daughter didn't appreciate the graphics as much as I did- announcing that they were too boyish colored and some are scary - one is bumble-bees and another is a crocodile. I steered her towards the other designs (cat & dog, underwater picture) and she was redirected. She picked out which one she liked (the crab from the underwater picture) and we went from there. I was glad actually that she picked the crab since it was just the right size to fit on her lens. Her lenses are not real big and most of the other animal pictures are actually quite a bit larger requiring me to cut through them (traumatic!).
Out of the 6 different designs we could cut out a total of 12 patches - so this is a very affordable solution at under $2 per patch! The patches are reusable IF you apply them carefully to a non-stick surface when you are not using them. You can carefully peel it off and stick it onto the glossy cardboard bookmark that they give you - or they suggest a window or a mirror. I did find that it seems to lose its stickiness so I am not sure how many times you could actually peel, store and reapply. Things like sweat, dirty fingers, unclean surface etc - will affect it! I'm also not brave enough to test this but I wonder how heat might impact the adhesive on the patch and if it could get gummy or gluey on your lens. Considering how expensive glasses are - I am very cautious to protect her lenses. Since I didn't feel comfortable about applying something with a sticky adhesive onto her expensive lenses I opted to this patch out with her spare glasses instead
The instructions are easy to follow and it will take just a few minutes to make a patch for your child's glasses. All you'll need is the glasses, a ballpoint pen and some scissors. First you peel a piece of the clear cling film and stick your lens for a tracing. Then you take that cling film and lay it on top of the "sticker" design and using scissors you cut both out simultaneously.
You then separate the 2 pieces and "stick" the cut out patch onto the outside of the glasses with the picture facing out and the black side in. I liked how it looked on her frames - no bulk at all, and I also liked the black interior. You cannot see through it and does a good job at blocking the light.
Our issue with the Dr. Patch is that it doesn't fully occlude. My daughters lenses are not real big and naturally they slide a tiny bit here or there, she is able to see over/under/or around the lens. In the case of Dr. Patch there is no covering there - only on the actual lens itself - so it left her "wide open". The temptation to peek with these is far to great and way to easy. I don't even really consider it peeking because she barely has to try or be sneaky about it in any way.
Dr. Patch in Photos:
Front: Face forward with her glasses adjusted perfectly Dr. Patch occludes forward vision.
Side: These frames actually have a somewhat wide arm on them so the frame blocks some side vision but it is not completely occluded
Check out these cheats....
Hint: If you can see those baby blues than she can see you too!
Because of the ease of peeking and the fact that it does not fully occlude my daughter's vision, this patch isn't our perfect patch. I do agree with Amomofelly at LittleFourEyes that it just doesn't fit the needs of a child with amblyopia who requires 100% occlusion.
That being said, even though it isn't our holy grail patch - I do believe this patch has a time and a place.
Will Dr. Patch be a good fit for you?
1) As some children's vision improves they will graduate to less restricted patching/occlusion. Some P.O.s will actually prescribe a blurred lens for their glasses that makes them have to work a bit harder to focus. An alternate to this is to apply a special cling film patch called a Bangerter Occlusion film that blurrs vision. While this patch won't occlude to a specific "power" like the Bangerter film, it is similar in how it attaches to the glasses, doesn't occlude the side, etc.
2) For the child struggling with patch compliance. Example: Maggie who is a little girl with Amblyopia that is featured here at Amblyopia Kids - she was just 2 years old and she was always ripping off her patches and not keeping them on. Well, their eye doctor actually suggested a solution similar to the concept of Dr. Patch - by cutting out contact paper and attaching it to the inside of the glasses lens. Using this type of patch was very successful for Maggie who "graduated" from patching in under a year. She is my inspiration! So, even though it didn't offer full occlusion it got the job done!
3) I'm actually thinking of Dr. Patch on my daughter's sunglasses which up until now I've been letting her go patchless with when we are outdoors. Belle has sensitive skin issues with the adhesive patches. And, lets face it - in the heat and sweat the adhesive patches are less than ideal. Sweating makes the adhesive patches come off and also causes irritation. Likewise, the cloth over the glasses patches can be bulky and somewhat "hot" as well - we have them made of fleece, felt, denim and faux suede. When my daughter wears her sunglasses I don't normally patch her for these reasons (also because they have no nosepad and many patches need a nosepad to hold them in place). So, in the absence of a suitable cloth patch for her sunglasses - I think this is a solution that is better than no patch at all.
For more info: http://www.eye-patch-info.com/
Wednesday, May 20, 2009
Once we started patching, the fall downs and run into the walls increased. Of course, I know that as her vision improves in her weak eye this hopefully will get better. In the mean time, it stinks!
Today at pre-k pickup the kids were all lined up against the wall and the teacher was calling them one by one to go to their parent. When Belle got called she ran towards me very excited to see me and about 5 feet away from me she fell smack down flat forward on the sidewalk. Her body actually skidded forward after she landed. Thankfully, she landed on her hands and knees and not her face as I immediately thought it looked like faceplant. Her beautiful face and her teeth and glasses were all OK. Her knees and hands another story - Sidewalk Rash. Not a lot of blood but she is very sore and there were many many tears.
Kids fall and get hurt but it kills me how much this happens. Her eyes need to get better and I pray that this happens quickly - even though I do know it can be a long process.
I pray we make it through this in one piece!
Tuesday, May 19, 2009
Unlike most of the cloth patches that slide onto the frame (some with one or two buttonholes to secure in place) - the framehuggers patch is more of a "contraption". I found myself fascinated and intrigued by it, and yes - I balked when I saw that it cost $20 for a single patch. Part of me thought "you've got to be crazy", and another part of me went - "I need to try this patch". That part won out after I contacted the company and shared my story via an e-mail. There is so much to be said for the owner and designer of Framehuggers, that my words will not do enough justice. The owner and designer of Framehuggers, Camille Workman, phoned me and we spent nearly an hour chit-chatting and talking about the issues that I was going through with my sweet little girl and the patch battles that seem to crop up on almost a daily basis. I talked to her about my ultimate frustration, my daughter PEEKS and seems to find away to defeat many of cloth patches so much that with many of them I need to double patch her and use a "harsh" adhesive patch underneath and then a cloth patch over the top. She shared with me about her experience with fitting glasses and working in pediatric ophthalmology and how she came up with the Framehuggers patch. The only words I can use to describe her - she is a class-act! Camille even helped me out when I was having problems with my daughter's glasses requiring frequent adjustments. She was able to diagnose the problem across the wires when the "idiots" at the local optical shop were failing me. When I finally got to someone locally who had more experience with fitting children's glasses - they told me exactly what Camille had. If only she was local to me - I wanted to hug her because she was right!
- First of all, these are a completely unique dimensional design that "hugs" the glasses frame to create 100% occlusion and will not shift or move.
- These are made of a soft and fuzzy anti-peel fleece (or standard fleece for patterns) so it is able to be washed.
- Are made completely custom to the measurements of your frames.
- Can be used on any type of frame - metal or plastic, with or without a nosepiece.
- Comes in a wide range of colors with or without appliques. The applique can be custom or from their gallery. For those who require alternate patching of both eyes, only one framehugger is needed - as it is reversible. She can put an applique on both sides for those who alternate.
- FrameHuggers come with a money back guarantee. The patches are $19.99 and shipping is FREE. If you purchase 2 patches you get free shipping and Priority Mail upgrade. If you purchase three patches; you get a 4th patch free and free S&H and free Priority Upgrade.
Because your Framehuggers are custom made, ordering is a bit more than simply picking out a color and a design. That's the part that I let my daughter be a part of - because if she is wearing it, she needs to like it. Not surprisingly she picked out a pale ballet pink color - for the design she told me that she wanted a kitty cat doing ballet. My image immediately jumped to Hello Kitty, but she told me know - she wanted it to be a grey and white kitty (like her favorite plush toy). I found this image - and she loved it. The next part consisted of me taking measurements off of my daughters frame and breaking out a ruler. The site gives clear instructions on how to input the measurements. Even a dummy could do it, except maybe me! Yep, I put them in wrong. I always tend to be doing 20 things at once and I put in a bridge measurement instead of a height measurement. But - I also gave Camille the exact model and make of my daughter's frames. When she realized that the dimensions that I gave didn't seem to make sense she did the legwork and got the measurements for my daughter's frame model. I received it in about a week's time - which was impressive considering it had to be custom made and then shipped across the US!
When I received our Framehugger - I was baffled by how to put it on my daughter's glasses. I wasn't even sure which end went in where and how to secure the velcro straps. I panicked but remembered there was an online tutorial on how to use it. Being that I tend to be more of a visual learner this helped me vs reading the instructions. I admit, I don't always read instructions (when I should!). You really needn't be overwhelmed on how to put on framehuggers! It is quite easy once you have practiced a few times. But, it is very important you are putting it on correctly. Instructions for use can be found on their website.
A video on how to put on Framehuggers:
Once my daughter wore her Framehuggers patch, I was a convert. This patch is peek-proof. I know this because Belle always gets fussy immediately after putting on her glasses with the framehuggers. I realize now after a month of using this patch as well as a few others... it is because she truly cannot see out of her eye and there's just no way for her to defeat it. I have also learned that I need to be strong and not give in to her initial complaints because after a few minutes she gets over it and she'll wear it until I say it is time to take it off (or remove her glasses).
Because the framehugger is custom made for my daughter's frames, it fits perfectly. It is not bulky, it doesn't cover up half of her adorable face, and it is a "set it and forget it". Unlike many other patches we have tried it doesn't require constant adjusting each time she removes or puts on her glasses. Should it need to be removed (say for her Phys-Ed class) and put back on, I am confident that when it is put back on it is the same way it was when it got taken off. I did need to show the classroom aide how to remove and put it on correctly since it is a bit trickier to put on that her other patches. This patch also has the advantage that my spirited 4 year old daughter can't quite figure out how to open up the velcro or pull it off of her glasses. She has been known to take off and hide some of her patches in an attempt to get out of patching time. She really doesn't like to wear an eye patch, but is better about it some days moreso than others. I'm glad she hasn't figured out how to take this patch off because it means she'll wear it longer!
Belle loves the pretty pink Framehugger with her ballerina kitty and tells me "it is so soft". I agree, the fleece is a lot softer than the popular felt patches. I know that it is very gentle on the lenses of her glasses and will not damage them (nor her pretty "bling bling" princess frames). I like that it doesn't irritate her tender skin and doesn't make her sweaty. The fabric is soft and breathable, and doesn't "pill". She and I both like the framehugger because it isn't real bulky. There are some patches that my daughter doesn't even want to eat soup, a slice of pizza, or a messy dish of macaroni while she is wearing because she is afraid to get it dirty - this one doesn't even come close to her cheek - let alone her mouth - so that is a big plus. No more excuses that she needs her patch off at mealtime.
I have absolutely nothing negative to say about Framehuggers. Even the initial "sticker shock" that I had about them being $20, is no longer an issue. There is no price you can put on a patch that is absolutely 100 percent occlusive. It is no wonder that Framehuggers are endorsed by an ABOM (American Board of Opticianry Master Certified Optician) Danielle D. Crull (author of Apple Patty Patches).
To order/contact Framehuggers visit their website at: http://www.framehuggers.com/
Our Framehuggers Photos:
More Framehuggers Fun
Sunday, May 17, 2009
From the article: Are 3-D movies bad for your eyes?
But will movies that seem to pop out of the screen hurt your eyes?
Some vision researchers say yes. They argue that repeatedly asking our eyes and brains to go against their normal function has short-term effects. And they worry about the long-term effect on small children whose vision systems are still in
People who lack depth perception shouldn't spend their money on 3-D movie surcharges. Perala said patients who don't use their eyes together because of disorders like strabismus and amblyopia can't be tricked into seeing artificial depth.
Some 3-D Movies coming out that you may want to consider seeing without the 3D.
- "Up" (May 29)
- Ice Age 3: Dawn of the Dinosaurs (July 1)
- Harry Potter and the Half-Blood Prince (IMAX 3D -- July 15)
- G-Force (July 24)
- Cloudy with a Chance of Meatballs (Sept. 18)
- Toy Story/Toy Story 2 (3-D re-release -- Oct. 2)
- Disney's A Christmas Carol (Nov. 6)
- Avatar (Dec. 18)
Thursday, May 14, 2009
The spa was fabulous, it was Sparkle Diva Studios - which only recently opened. The girls got mani/pedis, hairstyles, eye candy, and enjoyed cupcakes. The experience was complete with white fluffy robes and spa slippers - the kids loved the robes!
After the party was done we took Belle over to get her pictures taken at the mall. I wanted to get professional pictures done of her wearing her glasses. Her school pictures were done the day we picked her glasses up (but before the pickup) and when she saw the pictures the first thing she asked me was "wear are my glasses?". It seemed like this was a perfect time to go for pictures so off we went.
Can you believe that the photographer asked me "Do you want to take her glasses off?" I was so mad! I was also very glad she didn't hear him say it. I responded that I didn't - that I specifically wanted pretty shots of her wearing them. He looked surprised and then commented that it wasn't a problem he could take out any glare from the lenses in the pictures which was why he asked. It just made me mad that he even asked it.
Her pictures came out great!
My little glamour girl wearing her glasses.
Tuesday, May 12, 2009
The answer is boutique eye patches! We're simply going to have to "work it" with her outfits and make it fun for her.
Belle has a couple of these Peek A Boo patches that I bought off eBay, they are $6 a piece which is pretty cheap.
She already has one with princesses on it and another with Ariel The Little Mermaid.
I was looking online at Etsy and eBay tonight perusing the very cute (and often over-priced) Boutique and custom outfits. Belle wants a Sleeping Beauty gown and I'm kicking myself now that I didn't buy it when I got her gorgeous Cinderella one because that line of most-girly ball gowns is now replaced with one that I don't like. I want her to look gorgeous and not have it be scratchy or fall apart like the halloween costume ones or typical dress-up ones. She plays A LOT in her dress-up clothes and gives them a workout. I don't mind paying a bit more if it doesn't fall apart after one wearing - that is disappointing. Also, why are Alice in Wonderland dresses so expensive for such a simple dress?... But I digress.
I realize that Peek-a-Boo carries a patch that matches one of Belle's handmade Disney outfits
See this patch?
And this Mickey outfit she is wearing?
Monday, May 11, 2009
So, now - I'm trying to think about how to deal with patching on a Disney vacation and in the parks. Or, do I give her 8 days off from it? Do we patch her just during down time while we are back at our resort - except a lot of that time we spent at the pool in the past, so that wouldn't work. I'm worried about her safety and enjoyment with patching at the parks and on rides. I had a thought - maybe I'll patch her during meals... But, we do a lot of character meals and then she will have her patch on during Princess pictures, etc. Or, do we just take it one day at a time and try to get in as much patching as possible when its least invasive? I'm really not sure how we are going to do this. But, I am so excited to go on vacation again.
What to do? What to do?
Did your child wear an eye patch at Disney? I want to hear from you how it went. Did you use a GAC (guest assistance card) for accomodations like sitting closer in shows, etc (We use one for our child with Autism that bypasses lines, lets us sit near exits, etc)?
I learned about Fresnel Prism patches on the Prevent Blindness America forums where many parents raved about these patches. I ran into a few glitches locating the patches online as the Fresnel Prism website seemed to redirect to another company (that fixed computers!). Finally, I found it: MYI Occlusion Eye Patches or Fresnel-Prism (a new site). I immediately liked the variety of adhesive patches aside from the drab tan that we'd previously used and thought Belle would like this too. I also really liked that these patches had a black inside, to insure no peeking through and to block out light.
From their site the patches have the following features:
- PEEK-FREE, no tiny holes to fixate through.
- Adhesive is "aggressive" - It will stick when other patches won't - doctors approve of the sticking ability of these patches as children stay patched.
- Black layer provides for total occlusion
- Thinner Occlusion layer allows the patch to be more comfortable to eye lashes.
- Ink and Black Layer are non-toxic
- Sizes Available:Junior: 2.50" x 2.11"(recommended for children up to 3 years of age.)Regular: 3.16" x 2.25"
MYI Fresnel Prism patches come in all sorts of colors and patterns - girly, boyish or solid colors. They even have plain white patches with a printed pattern that kids can color in. Prices are $15 for a package of 51 patches - you pick up to 3 patterns or colors per pack. Priority Mail shipping is just $6.75 for up to 6 packs of patches.
I wrote to Fresnel Prism and explained my predicament with the adhesive patches we'd previously tried and they were kind enough to send Belle a bunch of their patches to try out. I specifically mentioned that she would like them to be girly so the patches we received included (Pink, Princess Crowns, Hearts, Kitties & Puppies, Butterflies, Tropical Flowers to name a few). We tried the patch in the regular size since the junior is suggested for children up to 3 years of age.
Of course the first patch she tried was the one with princess crowns. She even decided she would wear it to school without another patch covering it up. We put it on and got ready to head to school. When I picked her up 2 hours later, she was switched into a different patch because they had Phys-Ed. She told me that the patch hurt when her teacher pulled it off. Later that night when she took her glasses off to retire for the night, I noticed that the nosepiece was all bright pink instead of the clear it previously was. I cleaned it with an alcohol prep pad and most of the color came off. I actually didn't put 2 and 2 together and figure out the pink was from her patch (duh!) -- I thought it was from a school art project or that maybe she got into make-up (wouldn't be the first time!)
These patches are absolutely peek-proof, cover the entire eye and have a black inside padding that I liked. Belle likes the look of these better than the "band-aid" patches and wanted to wear them under her other "over the glasses" patches. She knows my rule "No peeking" - even if that means a double patch.But, she started really giving me 'lip' about how these hurt when they were removed. I think, actually these patches stick on too good! I realized this one day when we were headed out in the mama-mobile, as we often are "on the go". We were zipping off to an event with her brother (at the movie theatre) and so she got a "get out of patch free" card. She pitched a giant fit as I tried to take the patch off of her.
Pictures of Patch Removal:
She's so dramatic. But, I know when she's faking and when she is really uncomfortable. Unfortunately, seeing the redness afterwards - I know she's telling me the truth. These patches stick on so good that they are hard to pull off! In Belle's case, her skin is so very sensitive and easily irritated which makes these less than optimal for her. However, if you have a child who tries to pull off their patches, or you have problems with patches peeling off (due to sweat, etc) then you should consider these as they have really good stick-ability. Unfortunately, they are too sticky for my little princess. Also, be careful of the color rubbing off with the brighter colored patches.
Fresnel Prism addresses the topic of patch irritation on their website here with advice from parents, teachers and doctors.
Patching experiences vary greatly - The "best" patch for one child may not work on another one. While these MYI patches didn't work out so great for Belle, I wanted to share with you a link to a review of these patches by a mom of a 2 1/2 year old where they worked out pretty well. Check out Amomofelly's review at Little Four Eyes.
Thursday, May 7, 2009
I thought, this couldn't be. This is the kid that can hear me break into a snack or soda from rooms away. She doesn't seem to have any hearing issues. Granted, I said that about vision - and look where it got me. Could she also have hearing issues? Is my daughter going deaf? And Blind? Yeah, I got panicky and emotional and protective...
Two days later she was at the pediatrician for a routine visit and while she was there I asked them to screen her hearing. They did. And, she failed again. The nurse told me that she didn't respond to the beeps at all on her left side unless they were on the loudest setting.
My son has a history of ear infections and had ear tubes, Belle not so much. I mean, she had a few ear infections but she is generally pretty healthy especially compared to her brother. So - since I already had a great ENT with a full audiology unit - I scheduled an appointment.
I've been going nuts trying to research a link between amblyopia and hearing loss, or hearing issues. I really just in my heart and gut felt that the 2 were linked. I also wondered because both tests were done when she was patched if that affected her scoring. I also wondered if she just maybe didn't understand the instructions or if there could have been some fluid in her ear. The pedi said there did look like a little bit of fluid but nothing unusual.
We went to the audiologist today and they tested her hearing. The headset that they wanted to use for the first round of the tests was bulky and the tester suggested taking off her glasses since Belle said it was uncomfortable. So I took off her newly fixed glasses, and she proceeded with the test. Well - She did awesome, followed instructions and essentially passed the test with flying colors. Her ears look great, the nerves are great, her hearing is in tact. I can breathe again.
I mentioned to the audiologist about my concern with her failing previous tests with her patch on. She nodded and then asked if I had some time. She took another patient and sent Belle into the waiting area to play and told me to put her patch on her. In about 15 minutes she had me come back in and she administered the screen with her patch on. It was like I was watching things happen with a time delay. She'd send a beep and Belle would sit there, then a few seconds later she would acknowledge the beep by throwing the block into the bucket. Having seen her fly through the same exercise just a few minutes earlier I was shocked. If she had taken the test the first time with her patch on, she would have failed as she did at school and the pediatrician. She told me that this isn't the first time she has seen something like this. She has even seen kids fail hearing tests when they don't have their eyeglasses on.
It just reinforces to me how much all of our systems are connected. When she is patching she really is working hard to see, so much that she is struggling in other areas - like her hearing. It gives me even more respect for just how tough this is and makes me want to hug her over and over and over. It makes me even more motivated to stay on task and patch her diligently in hopes of a faster recovery to her sight in her the weak eye.
I want my baby girl to see and hear the world to the fullest.