Mishmosh

Today is a full moon.

I should probably end the post now.  The dog is crazy.  The kids are crazy.  I spring cleaned Finley's room.....

yeah.

Tomorrow I am taking Finley and Arlington to the dermatologist.  Arlington has this little blood blister on her lip that has been there for months.  The pediatrician suggested we have it looked at.  I am taking Finley because she is moley.  Is that a word?  Probably not.  She has a mole on her back, right on her pants line that is raised, and it bothers her.  She will not be pleased if it needs to be removed.

I have been having trouble with my knee again.  Some of you might remember that about a year ago the stupid treadmill fell on me while I was moving it and hit my knee so perfect that it caused fluid build up.  I had it drained, and then all was well.  And then about a month or so ago, the fluid came back.  So I am going next week to have it drained again.  Sucks to get old.

Scooby is not doing well in puppy school.  The last two weeks he has decided he wasn't interested in being a good dog.  He wants to be a crazy dog that doesn't sleep one wink during the day and shoves toys into my face 300,000 times a day.  He rocks.  He is lucky he is cute.  Tonight at puppy school he was very jumpy and excited.  Ah puppy hood.

I had an interesting conversation with Cainan's teacher today.  She contacted me last week about some concerns that she had about his behaviors in class.  He is not being bad or disrespectful, but he is being inattentive.  As many of you know, we have concerns about Cainan - always have.  He is a great kid, but he came from a hard start, and he is behind in a lot of areas - due to no fault of his own.  And now that is starting to catch up with him at school.  Cainan just wants to play.  He is having to be redirected often to work.  He misses a lot of directions because he is watching around him instead of listening to the teacher.  All things we know about him, but that weren't presenting in school before these last couple of weeks.

So......the teacher recommends he goes to transitional next year.  And in all honesty - I am okay with that.  Actually, I think I prefer it.  I think he needs time to catch up so that he can show the world what he can do.  He is very capable.  But he needs time.  He needs another year, I think, to really reach his chronological age.  To me, he is more of a 4 year old than a 5 year old.  He was 14 months when he came home from the orphanage, and he was really more like a newborn.  He had to be taught everything.  So I have always seen him as a year younger maturity age than Finley.  And it seems to be showing up in school now too.

Mat is not sold, of course.  He isn't as concerned about it as he was for Finley because it isn't quite the shock that was, but he still isn't in love with the idea.  Mostly because he is worried it will be a waste.  But I don't agree.  I think what Cainan needs is time. 

What to do now.  Keep them together and keep them both back??  Hmmmmmm.  Tuesday is the transitional parent meeting with the principal and transitional teacher.  I am looking forward to going to that and hearing what they have to say and what questions the other parents have.  Hopefully it will help us make a decision.

Decisions, decisions.  Like we didn't have enough going on. 

If Today Was Your Last Day

by Nickleback

My best friend gave me the best advice
He said each day's a gift and not a given right
Leave no stone unturned, leave your fears behind
And try to take the path less traveled by
That first step you take is the longest stride

If today was your last day
And tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past
Donate every dime you have?
If today was your last day

Against the grain should be a way of life
What's worth the prize is always worth the fight
Every second counts 'cause there's no second try
So live like you'll never live it twice
Don't take the free ride in your own life

Would you call old friends you never see?
Reminisce old memories
Would you forgive your enemies?
Would you find that one you're dreamin' of?
Swear up and down to God above
That you finally fall in love
If today was your last day

If today was your last day
Would you make your mark by mending a broken heart?
You know it's never too late to shoot for the stars
Regardless of who you are
So do whatever it takes
'Cause you can't rewind a moment in this life
Let nothin' stand in your way
Cause the hands of time are never on your side

If today was your last day
And tomorrow was too late
Could you say goodbye to yesterday?

Casino reminder

The Finley's Fighters Casino trip to the Rivers is coming up at the end of this week.  Friday, March 9th is the trip!  We are filling up the second bus, but have a few seats left.  Call and make your reservations.  WE really want to have two full buses go on the trip.

And remember - if you cannot ride the bus, you can meet the group there. You still have to let my mom or myself know that you are meeting us there because we have to give the casino a final head count.  If you do meet us there, here are your instructions: On the main floor of the casino you need to look for signs that say buses- it is toward the back.  If you have any trouble any of the employees can help you.  This is the spot where people gather to meet their buses and where they will let us off.  It is also where you get your players card and the vouchers- you just needs to be somewhere in that area.  You will see our buses pull in- we plan to arrive at 6:00 and there will be 2 Nelson Coach buses.

So join us!  These trips are great fundraisers for our foundation and so we appreciate you going along.  And they are great fun.  We have quite a few regulars on these trips because they have a great time.  You get $20 of your $25 cost BACK!!!  Can't be beat!

See you Friday!

A few more PA pictures

Here are the last of our pictures from our visit to PA.  Please pardon the quality.  I decided to take my smaller camera along for most trips because it was easier to manage since I didn't have Mat while we were out and about.  So the quality is not stellar. 

I know the grandparents won't mind

The kids table at GiGi Appolonia's house:

 Arlington's Harry Potter Birthday cake:

 Opening some presents:

 My mom so deserves this picture Arlington took of her.  My mom constantly takes pictures of us while we are eating:

 Arlington at dinner before the Penguins hockey game:

 In the kids zone at the Penguin's game:

 Sitting in our really high, very scary seats:

 The kids had a great time running around Uncle AJ's set before Fiddler on the Roof practice:

 Some of AJ's cast of Fiddler on the Roof:

 My nephew, "E" locked himself in Scooby's cage while I was making breakfast.  How I found out was I heard this little voice, "Aunt Jenny - I can't get out":

Dining in the Dark

Last weekend, we held our first ever Dining in the Dark experience.

We held it in Connellsville, Pa, among people who have been part of our fundraising for a long time.

I knew they would be up for being our guinea pigs martyrs for something new.

It was a lot of work, but definitely worth it.  We heard several people say that it was a great experience and it put things into perspective.

We had the chance to talk to all the guest and tell them more about what is happening with the foundation right now, and the research.  And we got to update them on how Finley is doing.  Many people got to meet her for the first time.

And there was laughter and tears.  When the lights went out, everyone went "oh!!"  We were able to make it so dark that you could not see your hand in front of your face.  And your eyes never adjusted to the darkness.

My mom and I and Marge Orlando had the night vision goggles and we served the whole meal in the dark.  It was fun to watch people adjust to not being able to see and coming up with adaptations to eat their meal.  They did a great job.

Some people said it was easier than they thought.  Some said it was harder.  No one got scared or had to leave.  It was great.

Will we do it again?  Hard to say.  Not because it wasn't a fabulous experience.  Because making pasta and sauce and bread from scratch took 3 days.  Because the goggles were harder to use than we first realized and we had quite the comedy fest when we tried serving the first time.

So we will see.  I am glad we did it and I am thankful to all the people who came out for the experience.  We couldn't have done it without my parents, the Orlandos and the Hornicks who helped for countless hours, made food, made baskets, helped us set up and clean up, and rolled around with us in laughter we put the goggles on and walked into everything in front of us.

We would also like to thank our event sponsors.  Our sponsors covered all the cost of the event so we gave all the profit to our foundation.  Thank you to Jess and Tom Schmitt and Cornerstone Appraisals.  Thank you to Justin Teets and the Freshman class at St. Vincent College.  And to Sally and Ben Pletcher who provided all the alcohol. :)  We appreciate it very much!  Your information was on the cards everyone got at their place settings.

Here are the pictures from the event.  I tried to take pictures of each of the groups that ate.  In the end we made $2200 with this event, and we thank you.

Enjoy the pictures!

Marge Orlando helps us pull the strands of spaghetti apart:

 The drying strands of homemade pasta:

 We looked awesome in our goggles:

The basement was our place for the dining experiences because it had the least amount of windows.  It was small, but it worked:

 Each person got a card that explained about Finley and the experience.  On the back of the card was information about our foundation and our sponsors for the event:  They also got a brailled name card and I made them a brailled book mark.  They also got a magnet:

 Mary Louise Hornick supplied the flowers for the tables:

 Our first dining experience Friday night.  They got to eat their salad before we turned the lights out.  The main course and dessert were in the dark:

 Breakfast Saturday morning.  They got to eat their fruit salad before we turned the lights out:

 Saturday night crew:

Catch up - Trip to NYC for Arlington's Birthday

Almost two weeks ago now (hard to believe) Mat and I took Arlington to NYC for her 9th birthday.  It was just the three of us, and we had a great time.  We took the train into the city (it is about a 4 hour train trip from Mass. with lots of stops) and spent two nights in the hotel on Times Square - the location couldn't have been more perfect.

We arrived in the city late Friday night, so we just took a taxi to the hotel and went to sleep.  Saturday was a busy day.  We started with breakfast at Jamba Juice and then walked around for a bit before TKTS (discount tickets for Broadway shows) opened up.  We already had tickets for Lion King for Saturday night, but we wanted tickets for an afternoon show.  It was a holiday weekend, so unfortunately our top 3 choices (Spider Man, Phantom of the Opera, Blue Man Group) were not available.  So we saw Sister Act, which was pretty good.  Arlington really liked it.

After we got our tickets, we went to the American Girl store so Arlington could burn some of her birthday money.  (thank you to all of the relatives who donated to her NYC birthday trip!)  She bought the "girl of the year" Makenna, and the doll also attended all of the broadway shows with us.

Before the show we had time to eat a hot dog off a street vendor (yes you must do this when in NYC - they really do taste good), visited the Disney Store, the Nintendo store, the giant Toys R Us, and the M+M store.

After the first show, we had dinner with my cousins Kirsten and Alissa Wyatt who live in the city.  Arlington loves getting to see these two ladies every time we visit the city.  They gave her presents (thank you girls) and doted on her before it was time for Lion King.

Lion King was as awesome as I remember.  It truly is a show like no other.  And Mat and I have seen quite a few on Broadway.  Arlington had a great time during the whole show and was still wide awake at 11pm when we were walking back to hotel.  (don't worry - we didn't have to walk far).

Sunday morning we had a quick breakfast and then went to the Empire State building - Arlington's request.  That girl is a thrill seeker and wanted to be somewhere high.  It was the first time I had been up there since 9/11 and it was weird, and sad to be able to see past where the towers used to stand.  You could see where the 9/11 memorial and the new tower were being built.  It was a really clear day and we could see really far, which Arlington enjoyed.

After that, it was time to go home.  Mat was going back to Massachusetts by train, and Arlington and I were going on to Pennsylvania with my parents for a week (along with Finley and Cainan).

It was a fun weekend and I was glad we were able to do this with her.  Arlington is a great big sister, and she has to deal with because we devote so much time with Finley, so it was time to give her a chance to be with us by herself.

And she took full advantage by talking non-stop for 3 days.

Enjoy the pictures!

Arlington played on my computer on the train ride

Enjoying our Jamba Juice on Times Square

Looking for her doll at the American Girl store

The Mickey in the Disney Store

Outside the Lion King theater

At the top of the Empire State Building

Rare Disease Day

Today, we raise our voices for Finley and for all children who suffer from a rare disease.

Today our family and friends wore red, their Finley's Fighters shirts, their wristbands, their braille shirts - in honor of our little girl.

On of my childhood friend's little boy wrote a book report using our book that Mat and Finley wrote together.

He shared it with his class today - how cool is that?

 I talked some of the people who showed their support for Finley today into sending me a picture of themselves. 

Today kids in Finley's class wore red and we sent them all a Finley's Fighters wrist band to wear.  Arlington's class wore Finley's Fighters wrist bands.  Cainan wore his Finley's Fighters shirt and got to talk to his class about Finley.

  Mat is in Washington DC today talking to the National Institute of Health.  Family and friends are sending letters to their local congressman/woman to express the need for more money and research for rare diseases.

People are spreading the word today about Finley, LCA, and our cause. 

 Our video is being passed around so that more awareness about RDH12 is raised.

  Today is a great day.

 But today - for us - is no different than yesterday and no different than tomorrow.  We push this hard every day for Finley.  It is always on our minds.  Every day we don't have a cure is another day closer to total blindness for her. 

We will never quit making this fight the forefront of our lives until we report that Finley's LCA is cured.