Tuesday, October 15, 2013

Finley's class

Finley's teacher has a blog that she keeps up so we can get peeks inside the school day.  I love this - Cainan's teacher does it too.  It is great because little kids are the worst at telling us what goes on during their school day, so I love being able to see them "in action".

Finley's teacher has taken to having Finley in her class and turned it into a teaching tool for kids with disabilities.  It is really wonderful, actually.  I was happy to hear she was going to embrace Blindness awareness month.  We went in to meet with her last Friday and around her room were all of these things about Helen Keller, Braille, Therapy Horses for the vision impaired - all of these discussions she had with the class.

Then all the kids did a project on blindness.  And Finley got to share her braille bookmarks.  And then Finley and her Teacher for the Vision Impaired (TVI) taught the kids about braille, and how to use the brailler.  Then they did an activity on braille. 

It is nice because it takes the mystery out of the mystery.  Most of these children - if they didn't have this opportunity, and have Finley in their class - would not ever see Braille up close, or get a chance to understand what some of those dots mean, so what a brailler looks like.  So, it makes us happy that they have a chance to learn about vision impairment and what it means for their friend.

So - I am attaching the link to the teacher's blog, here. 


You will really enjoy it.  Oh, and the woman that is with Finley in the picture - that isn't her classroom teacher.  That is her Teacher for the Vision Impaired - Mrs. L.  She.is.hands.down.the.best.  She is never allowed to retire or to leave us.  She is Finley's team leader, and we would be lost without her.

Enjoy!

Monday, October 14, 2013

Making Meals Monday

Garlic Salmon Recipe

Original recipe makes 4 to 6 servings Change Servings
 
  • 1 1/2 pounds salmon fillet
  • salt and pepper to taste
  • 3 cloves garlic, minced
  • 1 sprig fresh dill, chopped
  • 5 slices lemon
  • 5 sprigs fresh dill weed
  • 2 green onions, chopped

Directions

  1. Preheat oven to 450 degrees F (230 degrees C). Spray two large pieces of aluminum foil with cooking spray.
  2. Place salmon fillet on top of one piece of foil. Sprinkle salmon with salt, pepper, garlic and chopped dill. Arrange lemon slices on top of fillet and place a sprig of dill on top of each lemon slice. Sprinkle fillet with chopped scallions.
  3. Cover salmon with second piece of foil and pinch together foil to tightly seal. Place on a baking sheet or in a large baking dish.
  4. Bake in preheated oven for 20 to 25 minutes, until salmon flakes easily
 ___________________________________________________________
 
 Rosemary Ranch Chicken Kabobs
 
Ingredients
  • 1/2 cup olive oil
  • 1/2 cup ranch dressing
  • 3 tablespoons Worcestershire sauce
  • 1 tablespoon minced fresh rosemary
  • 2 teaspoons salt
  • 1 teaspoon lemon juice
  • 1 teaspoon white vinegar
  • 1/4 teaspoon ground black pepper, or to taste
  • 1 tablespoon white sugar, or to taste (optional)
  • 5 skinless, boneless chicken breast halves - cut into 1 inch cubes
 
Directions
  1. In a medium bowl, stir together the olive oil, ranch dressing, Worcestershire sauce, rosemary, salt, lemon juice, white vinegar, pepper, and sugar. Let stand for 5 minutes. Place chicken in the bowl, and stir to coat with the marinade. Cover and refrigerate for 30 minutes.
  2. Preheat the grill for medium-high heat. Thread chicken onto skewers and discard marinade.
  3. Lightly oil the grill grate. Grill skewers for 8 to 12 minutes, or until the chicken is no longer pink in the center, and the juices run clear.
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Beef Bulgogi

Ingredients
  • 5 tablespoons soy sauce
  • 2 1/2 tablespoons white sugar
  • 1/4 cup chopped green onion
  • 2 tablespoons minced garlic
  • 2 tablespoons sesame seeds
  • 2 tablespoons sesame oil
  • 1/2 teaspoon ground black pepper
Directions
  1. Place the beef in a shallow dish. Combine soy sauce, sugar, green onion, garlic, sesame seeds, sesame oil, and ground black pepper in a small bowl. Pour over beef. Cover and refrigerate for at least 1 hour or overnight.
  2. Preheat an outdoor grill for high heat, and lightly oil the grate.
  3. Quickly grill beef on hot grill until slightly charred and cooked through, 1 to 2 minutes per side.





 
 
 
 
 
 

Sunday, October 13, 2013

Sleep Over

Yesterday, Mat, Arlington and Cainan left mid-afternoon to go to the New York City Comic Convention.  My kids - Mat included - love superheros and comics.  When Mat and I lived in San Diego, we used to go every year and I have to admit it is a lot of fun.  I got to meet and see many big stars (Ben Affleck, Joss Whedon, and Arnold Schwarzenegger included).

So, when we moved back to the north, Mat started taking Arlington to the Convention in NYC.  It isn't as big, but still pretty fun he says.  Cainan went last year for the first time.  Finley, I think, would like it, but she has a tough time with crowds, so she and I opted to stay behind this time.

Finley and I had a little girl time when they left.  We ordered food in (her favorite thing to do) and watched a movie.  She got a special treat of orange soda and a small bowl of marshmallows (her choice) for dessert.  She wanted to sleep in the family room (she loves the idea of sleeping on the couch.  Weirdo), so I set up she and I on the couches for the night.  We watched TV and chatted until 10pm when she finally gave in and went to sleep.
Today she played in the morning at the neighbor's house, and this afternoon she had a playdate with her bestie "L".  Now we are having dinner and watching another movie she wanted to see.  Soon it will be time for bed, and Mat and the kids will be home about 9pm.

It was fun - just she and I.  She said she had a great time and the "best night ever".   It isn't hard to please little kids. 


Wednesday, October 9, 2013

Blindness Awareness Month

October is Blindness Awareness Month.  It was declared by the President a few years ago.  So great to have our own month!
This month we focus on facts about blindness, encouragement for hiring blind adults into the work force, and what it means to be a blind person.
(this is the ribbon for rare diseases)
This is also the three year anniversary for the start of our RDH12 Fund for Sight.  October is a special month.

I found some pictures on the internet that represent what Finley sees.  Since she is missing her central vision, this is what she sees:



This is why she has so much trouble seeing people's faces.  She tends to shy away from new people until she gets to know them because she cannot see them well.

This month Finley took in bookmarks to all of her classmates that she brailled with their names.  She and her vision teacher also did a braille demonstration and her braille teacher stated that Finley was "quite the little teacher" and did a great job.  This is the first time Finley has offered to show what she can do.  I am glad to see she is becoming more comfortable with braille.  Most of the kids in her classroom know her, and know what is going on with her, and I think that helps.  She has developed quite the core of kids who care about her and protect her fiercely.  She is very blessed.

This month also brings a lot of sadness, of course, because as we talk heavily about braille, and blindness, and what we need to get that cure, we are hit with the reality of Finley's situation.  When you look at her you have no idea that little by little this horrible disease is eating away those precious blue eyes.  You don't know how much longer she will see our faces, or walk without her cane on a daily basis.  In every day life, we tend to forget what is happening because we focus so much on her just being a typical little girl.  But the reality is there.  We can't wish it away because we want it so.

So - we are grateful for this opportunity to educate people on blindness.  There are over 1 million legally blind children and adults in the country, but most of us go a lifetime without actually knowing one of them.  It is still something we as a country are uncomfortable with and pity.  When you think of Helen Keller do you think "inspirational speaker" or "sad situation"?   Do you see someone with a white cane and think "what a shame.  Glad I am not them" or do you think "there is someone I wish I could get to know".  We, as a society - myself included - need to change our ideas of what it REALLY means to be blind.  Because I can promise you - you can talk to just about any blind aduilt - or child for that matter - and they are not going to be feeling sorry for themselves.  They will tell you about their amazing lives, their families, their husbands, wives, kids.  They will tell you about their travel (one person traveled to Japan!  Alone!!).  They will tell you about their jobs (MIT!  World Trade Center! Teacher!  Scientist!).  They will tell you about their hobbies (triathelete!  famous chef! baseball! Climbed Mount Everest!).  You.Will.Be.Amazed.
(this is the ribbon color that represent blindness awareness)
I have heard the stories.  I have found that people who are blind lead more interesting and more active lives that the average person.  There are 100's of books out there are people who are blind who grew up to do amazing, book publishing things.  Can you say that about you?

Use this as an opportunity to do something you would never do.  Take yourself out of your comfort zone and take a leap.  What is stopping you?

Sunday, October 6, 2013

Oh Finley

How we found our girl last night when I went to check on her one more time.  She was asleep like this:


If you are on facebook - or even if you are not (I think you can still see this site, but I don't know for sure) - check out our new RDH12 Fund for Sight page.  Here we will be posting updates, news, and pictures more frequently than on our official website.  (because it is easier)

Saturday, October 5, 2013

Another Successful Event

I have been a bad blogger this week!  I cannot believe I haven't been on all week.  This was a busy one.  My parents came in for a visit on Wednesday and we left Wednesday night to go to Long Island, New York for a fundraiser.

Our RDH12 family - the Fiore family - held a fundraiser on Long Island this past week, and we went to help out.  We had a great time.  Mat couldn't get away from work, so my mom and I went.  I am so glad we did - we had a fantastic time! 

The event was extremely successful for our foundation, they raised $35,000 to put toward our cure for RDH12 LCA.  We were blown away.

My mom took a few pictures while we were there, so I wanted to post them.  Enjoy!

Getting set up for the day:
 Baskets for the Basket raffle:
 Where we would eat:
 The ladies:  Maria (Bella's mom), me, Maria's Mom, Mike's mom (Bella's dad), my mom:
 Golf balls they gave the golfers:

 Selling basket raffle tickets:
 The brunch spread:
 My mom being a goofball:
 Some of the guys:  Two of Bella's uncles and her two grandpas:
 The golf carts all lines up to go:
 Maria and I relaxing:
 Having a late lunch with Bella, Ava and Anthony:
 The dinner after the event: