World Sight Day

Today is World Sight Day

Please take just 1 minute & close your eyes. Experience darkness during the daytime when you are wide awake going about your business. Be blind for 1 minute. Recognize that some people can only see lights or shadows or have limited fields of vision. There are many types of sight; but none compares to healthy vision & having full sight. Today, celebrate your sight. It is a wonderful amazing thing.

Blindness awareness month and Finley

Today's topics - What Finley's retinas look like and why does she wear glasses

When Finley was diagnosed, the way we first found out something was wrong was a picture the eye doctor had taken of her retinas.  The retina is the back part of the eye that receives all the information to tell your brain to see.  Light bounces off the retina, and that gives you sight.  Wala. 

It is obviously more complicated, but this is what you are getting from me.

So - here is a picture for reference.  When the doctor's look at Finley's retina, they see the picture on the right.

 

The retinal should be pink and happy.  Finley's is gray, black in spots, and complicated.

What the doctor's look for each appointment is if the black areas are getting larger - the black spots that is.  If they are increasing in size which means more of her retina has died off.

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Finley does wear glasses.  You will see them in (most) of the pictures we take of her.  What some people don't know is that the glasses don't actually correct her vision.  There is just plain old glass where prescription lenses would be.  We have had several doctors try prescription lenses on her, and they don't do anything for her, or actually make her vision worse.  But the doctors wanted her to have her eyes protected and also her remaining vision protected, so we ended up with the glasses she wears today.

Part of the LCA diagnosis is eye pressing.  The kids will press on their eyes, or rub their eyes.  Some doctors think it is the kids trying to clear their vision, but really, there isn't much research on it.  We know of kids who press almost constantly, and they have no vision, so who knows.  When Finley was a baby, she rubbed her eyes quite often.  We thought she had allergies - it was pretty noticeable.  Now we know why she did it.  She will still do it from time to time - especially if she has her glasses off.

So the doctor said that glasses would help stop the eye pressing -she would reach for her eyes, glasses would be there, and down goes her hand.  And it does work! 

The other thing is - her type of LCA causes cell death from light.  All kinds of light - natural and unnatural light.  So there is a tint on her glasses for that reason.  She wears the glasses at all times while she is indoors, or low light situations outdoors.  During day time, she wears dark sunglasses outdoors - even in the winter.  We even have a special pair she wears when she plays in the snow for snow glare.

We hope with these protections, we are slowing down the death of the cells in her retinas and preserving her vision for gene therapy.  The more live cells she has when treatment time comes, the more of her vision she will retain.  

We can't express enough how important it is to protect your eyes.  EVERYONE's eyes.  When you are gardening, or doing any kind of yard work, when you are outside, driving, etc.  These are the windows to the world.  Protect them.

 

Making Meals Monday

We're back!  After a long (looooooooooooooooooooooooong) hiatus, Making Meals Mondays will return.  At least until I run out of Pinterest meal ideas.

If you are new to our blog, every Monday I used to post 3 meals I would be fixing that week, and how to prepare them.  I found that if I put them on the blog, I felt responsible to follow through and cook them, so it is time for that again.  I am not a very good cook, and I really do hate it, but I am tired of what we have been eating lately.

So, thanks to Pinterest which helps me NOT have to search for meals endlessly for meals, I have found some things to cook over the next couple of weeks.  But here is what we are fixing this week.

And no worries-  we eat more than 3 meals.  Promise.  No starving kids.  I just only post three because some nights we eat quick (boring) meals, or go out.

BBQ Chicken Rolls
makes 12
12 egg roll wrappers (roughly 4 square inches)
1 cup cooked and shredded chicken (6 ounces)
1/2- 2/3 cup BBQ sauce
1 cup crumbled blue cheese (4 ounces) - (or for us - we used cheddar cheese)
1 cup broccoli slaw or cole slaw (dry)
Small bowl of water
Nonstick cooking spray
Blue cheese dressing, for serving  (we used sour cream instead)

Preheat oven to 400 degrees F. Lay egg roll wrappers on a clean work surface. In a small bowl, stir chicken* (see note below) and BBQ sauce until well coated, using more or less sauce depending on your spice preference. The meat should be moist with sauce.

Begin by placing one tablespoon of the broccoli slaw on the diagonal of the bottom right corner of one of the wrappers. Next, place 2 tablespoons of shredded BBQ chicken evenly on top of the slaw. Spoon 1 tablespoon of the blue cheese crumbles over the chicken. Do not overfill.

To fold: Fold the bottom right corner over the stuffing mixture so that it covers it completely, with the tip of the corner now pointing to the center of the egg roll wrapper. Fold in the bottom left corner, followed by the right, so that you now have formed an envelope. Roll the wrap upward one time, leaving the top left corner open. Wet your index finger in the small bowl of water and press to moisten the top left corner. Now fold that down on top of the filled roll, sealing it like you would an envelope.

Repeat with remaining rolls.

Place the rolls on a wire rack set on top of a cookie sheet (or just on a greased cookie sheet) coated with nonstick cooking spray. Spritz each roll evenly with nonstick cooking spray. Bake for 12-15 minutes, or until the rolls crisp and turn a light golden brown.

*Note: To make the chicken, place 1/2 lb of uncooked chicken breast in a small pot and fill with enough water just to cover it. Bring to a boil on your stovetop, reduce the heat slightly, then simmer for about 12 minutes, or until cooked through. Drain and let cool before shredding with two forks, pulling against the grain of the meat.

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Homemade Calzone

I am going to share this right from the website I found it because it has pictures that I found really useful.  ALSO - PLEASE PUT THE WHOLE THING ON THE BAKING SHEET BEFORE YOU START!!!!  This was a mistake the person make, and it made it really hard to transfer.

Roll pizza dough into a rectangle the length of your baking sheet. It can be wider than the sheet because you will be folding the sides in. Place the dough on the baking sheet and let the sides hang off.  (I bought pillsbury pizza dough in the can)

Put sauce on the center half of the dough.



Just like pizza, add your toppings (our favorites are pepperoni, olives, and mushrooms). Calzones can be a good way to use up leftovers. Any small amounts of meat, cheese and vegetables can be put into the calzone.



Then add cheese.



Now comes the special part. Cut the dough on the sides at about 3/4 inch intervals. Don't cut all the way to the filling.



This is what it looks like when all the cuts are made.



Then "wrap the baby." (That's what my friend said it looked like when I showed her how to make this recipe!) Start at the bottom and alternating sides, overlap the strips of dough onto the filling in a lattice pattern. You can stretch the pieces to fit all the way over the filling.



Here is the calzone ready to bake. Bake your calzone at 375° F (190° C) for about 25-30 minutes.

Uh oh... don't do what I did. Now how in the world do I get this huge thing onto a baking sheet? I knew there was something I was forgetting!!

For the second one, I remembered to start with my rectangle of dough ON a baking sheet. That makes cutting the dough a bit harder, but I used my handy kitchen scissors.



By the way, the same dough wrapping technique can be used for sweet fillings too. See my apricot coffeecake for an example.

The Calzone -- Baked, Cooled, and Ready to Eat

After baking your calzone, remove it to a wire rack to cool.



Aren't they beautiful? And the whole house smells like a pizzeria!

I use a recipe from allrecipes.com.



Once it's cool, you can cut the calzone into slices.
All the goodies are sealed inside the bread. Portable pizza!

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This person's site: http://foodgawker.com/popular/favorites/ - has a TON of great recipes, really, but I am making this one this week:

Kaytucky Chicken

Directions:
4 chicken fillets
4 frozen puff pastry sheets
4 oz cream cheese (the firm kind)
few rashes of bacon
flat-leaf parsley
1 spring onion
1 large egg
pepper
salt
Directions:
This is what we call ontbijtspek here. It’s kinda like bacon, only much salter. They come in small portions. I’ve cooked four thin slices and drained them on a paper towel. I’m not using too much, but feel free to add as much bacon as you like.

I’ve also chopped a spring onion with my cute orange baby Santoku.

And I’ve finely chopped a small handful of flat-leaf parsley. Gotta love the stuff. You can use any herb you like, though.

Add the spring onions, parsley, crumbled up bacon and a good pinch of pepper to 4 oz firm cream cheese; I’ve opted for low-fat cream cheese.

Mix it all up. Adding a little garlic, chili pepper and/or grated cheese also tastes great! Just go wild! Think of fun combinations.

Make a fairly deep cut in each chicken fillet. And spread 1/4 of the cream mixture in there.

My puff pastry sheets were fairly small, so I’ve used two for each chicken fillet. I kinda stuck them together, and flattened them a little with my dough pin.

Until I ended up with puff pastry looking like this.

Place the chicken on top of the puff pastry, with the cream cheese side down. Season the chicken with a generous amount of salt and pepper.

Beat a large egg, and brush a little on the edges of the puff pastry.

Just fold them until you end up with small packages. The egg will function as a glue. Lightly brush the top of the puff pastry with the egg as well.

Pop them in a preheated oven, and bake at 400F (200C) for 30 to 35 minutes.

These were so good. The flavors together just worked. Even the kiddo loved them, and that’s saying a lot these days.

Being your child's best advocate

While we are in Blindness Awareness Month, I thought it would be important to talk about advocating for your child. 

I have been a pediatric nurse for 15 years.  I have seen mama bears of all shapes and sizes over those 15 years, and two types stick out in my mind.  Both types were huge advocates for their children.  One type was easy to deal with, and one was not.

Since Finley has been diagnosed, I have a better understanding for type two.  I understand their attitude because they are just upset.  They are upset about the situation they are in (especially if the child was terminal) and they are scared.  Does it condone rude behavior to a nurse who is just trying to help you?  Heck to the no.  But I do understand and I always tried to sympathize with their pain.

Because of those type of parents, I know what I need to do for Finley.  I wanted to be type one - the one that is easy to deal with.  Me shouting at teachers, or doctors, or people on the phone will not only make things worse, it makes the people less willing to help Finley.  And in the end, that is always what we want - help for FINLEY.

There is a fine line between being firm and being rude, and when a parent crosses over that line, it is hard to recover.  You really do get a reputation.  Trust me on that one.

Being an advocate for Finley has been my biggest reward in this life.  Getting her what she needs and making sure all of our questions are answered to our satisfaction is my number one priority.  But I do it with a smile, and conviction all at the same time.  We go prepared with questions and notes so that we are not steered off course.  And 99% of the time, things go perfectly.

Now, don't get me wrong, I will call a person out if THEY are being rude or non-bending.  We make it very clear that we are there to work with the person, not against, and that we all are working toward a common goal.

We have also been very lucky in getting everything that Finley needs without very much of a battle.  Both Connecticut and Massachusetts educational systems and medical facilities are top in the world, and I see why.  But we have heard horror stories from other families in other states.  It is a shame what some of these families have to deal with.

So what I can offer is this:  Stand FIRM but keep CALM.  You don't have to back down from your point, but getting upset won't get you anywhere.  I have been in IEPs with rude parents and I see a change in the staff when the parent starts bad mouthing the staff.  They put up a wall.  You don't want that.  So leave your anger at the door.  Take a deep breath.  And find a middle ground where everyone can agree.

Continuing with Blind Awareness Month

Today I am going to share what Finley "sees"  At least according to all the tests she has had.  Finley thinks she sees just fine, which is a whole "notha" story.

I know this photo says "age related Macular Degeneration" but this is how Finley's diagnosis acts.  Many types of LCA mimic Macular degeneration because of what is happening to their eye.  LCA is the most severe form of retinal degeneration there is.

Aren't we lucky.

What you see above is the black spot that should be Finley's central vision.  Because she doesn't have any, this is what she sees when she looks at people.  The blurry edges are there too.  Normal vision is 20/20.  Hers is 20/200 and cannot be corrected with glasses.

So not only does she have the black spot, she has the blurriness to go along with it.  A double whammy. 

She doesn't look you right in the eye because she is trying very hard to see your face.  We think she can make out enough for recognition EVENTUALLY, but at first, she doesn't know who it is.  This is a big part of her shyness, and why it takes her a long time to be comfortable in a group.  Unless she knows the voice, the hair, the mannerisms of the person she is with, she is a total wall flower.

We think that she had most of her central vision when we found out her diagnosis, and just lost it in the last year or so.  The disease process will continue and the black spot you see above will get bigger and bigger until there is nothing left.

But we aren't going to let that happen.  Are we?

Halloween Costumes have arrived

Today the kids got their Halloween costumes.  So we had to try them on.  Of course.

They are totally random this year - not like last year when we just had gotten Scooby and they went as the Scooby gang.

This year, Cainan wanted to be Wolverine.

Look how fierce he is.

That boy cracks me up when he wants to pose.  He loves his super heroes.

Finley wanted to be Dorthy from Wizard of Oz.

Has she seen the Wizard of OZ?  No.  Did she like that the costume came with a basket and a dog?  YES.

Do  not ask me what to make of this next photo.  Cainan wanted me to take them together. 

Arlington wanted to be Frankie Stein from Monster High Dolls.

We need to work on the wig.

I cannot believe it is October already.  We are in full swing with school, homework, and activities.  And the stores think that it is time to think about Christmas because there are decorations in every store.  So sick.

Braille Awareness Month

October is Braille Awareness Month.  As you know, Braille Awareness is high on our list here in the Pletcher household.  ANY type of literacy is high on our list.  Finley may always have to read a little different than her brother and sister, but she will READ.

Listening to books on tape is not literacy.  It is not reading.  As great as books on CD, books on Ipad/Ipod/electrical device are, they are not what is meant by reading.  I want Finley to learn how to READ.  She will never be able to read like Arlington and Cainan, but she CAN READ.  She is learning to read braille.

Mat and I have learned braille.  Finley's aide is learning braille.  We are showing her how important it is.

This month I will be back to making Braille items.  Shirts, hats, bags, and even Christmas Ornaments.  We also have our Finley's Fighters Keychains for sale.

IF you would like something brailled, email me at rdh12@rdh12.org and let me know!  Shirts and bags are $15.  Hats will vary on the cost/style of the hate.  Ornaments are $3.  Keychains are $5.

All money goes to our RDH12 Fund for Sight!  Thanks for your support.