Prayers needed for a friend

Okay Finley's Fighters - I need your help.  There is a sweet little friend of ours that is in a fight for her life.  Her name is Alicia Hruby, and she needs a life saving liver transplant.  Her mom Donna Marie Sowers Hruby and Alicia have been huge supporters of Finley and our efforts, and even with everything they have going on, they still came to Finley's event and show constant care for Finley.  So, in return, I ask for your prayers for Alicia while she wait.  And if you live close to Monogahela, please consider going to one of their events. 

Visit http://www.angels4alicia.com/  to find out more! 


Thanks everyone!

BRAINS!!!!

Today, Finley participated in a study at MIT.  A few months ago, a new friend of mine (an adult with LCA) contacted us because they were running a study looking at children who were blind/vision impaired and how their brains function during certain tests.

So we agreed to participate, and today was our day.  IT was a 5 hour day, but Finley did great.  They did a "mock" scan for one hour to show her what it would be like in the scanner and the sounds she would hear.  She didn't care at all.  She got to listen to music during the whole thing, so she really paid no attention to the whole ordeal.

After the practice, they got her all set up for the real scanner.  I had one of the girls take her picture, so when I get that, I will post it.  She looked pretty cute in all the head gear.  She was a real trooper. She was in the MRI scanner for nearly 1 hour, and she didn't move a muscle.  She had a blindfold on which - personally - I think helped.  And she had earplugs in and was listening to music, and then to the games (tests) they were giving her. 

From what I understand, they are looking for changes in the brain related to music, stories, etc. in kids who are vision impaired.  When kids have missing site, certain parts of the brain are asleep.  Some never start functioning because they aren't used.  What science is showing, though, is that these parts of the brain can be retrained.  It is pretty cool.

After the MRI, we had lunch (courtesy of the MIT neuro folks) and then she did more testing (games and questions with the teacher of the vision impaired there) for another 1 1/2 hours.  Never complained once, and listened to all of the directions.

In the end, she came home with little prizes from being in the MRI and participating in those test, a BIG prize at the end of the day (which was a $50 gift card to Amazon and a brain jello mold), and I told her I would give her $5 toward her goal of getting Kit the American Girl (she only has $10 more to earn).  So all in all, she thought it was a great day.

They sent her home with pictures of her brain.  She is excited that she will get to take them to school to show her friends.  Here is Finley's brain!  At least she has one in that head of hers.

Time to catch up and get back on track

I am starting to feel like half a human after last weekend's race, so it is time to get back into a normal routine.  The house is starting to look like our house pre-race, again, and we are gearing up for school next week.  This week I am trying to let the kids do whatever they want (to an extent) since this is their last week of freedom.  I think we are going to have a challenging year ahead, so maybe the week of "whatever" is kind of for me too.

Monday morning, bright and early, I met with Finley's teacher, braille teacher, and special education teacher just to give them a little synopsis of Finley and her needs.  The three teachers had met together last week and Finley's braille teacher (who I am grateful every day) filled them in on Finley's needs and gave them the low down.  All I had to do was give them my concerns about Finley's personality and my worries about this coming year.  The teacher was supportive and sweet, and I think she is going to be a good fit for Finley. 

My concerns for this year is that first grade is a lot of work.  There is a lot of reading, a lot of class work, and not much down time.  For a kid who is still using her "not so great" eyes to do class work, she tires quickly.  She rubs her eyes, she quits, she puts her head down.  She is going to be exhausted by the end of the day visually, and she isn't going to have much left for any homework.  As the print in the books gets smaller, more and more accomodations are going to be put in place.  Our braille teacher doesn't really love making everything large print because it isn't practical, and I do agree with her.  The Ipad will come into play a lot.  The school has hers, and her braille teacher has ordered a cool stand for it, so she can rotate it around and use it as a camera to enlarge what is going on in the class.

But the board has a glare when the teacher turns on the overhead. Finley can't even read the print from her seat right in front of the board.  They had to put bright neon tape on the edges of cabinet doors that don't always close tight, and the three doors in the classroom that she could run into.  The bathroom is down the hall and she has to remember which one is girl's and which one is boys.

I am terrified.  I know she will be fine, but right now, I think she is going to be overwhelmed.  The work, the kids, the new class, the new routine.  And she moves slowly and the teacher stated "we have to move quickly in the morning to get to work".  What do I say to that?  She can't move quickly - she has to search with what little vision she has to unpack her back pack. 

I want her to keep up with the world.  I want her to be held accountable.  But I also want her to be treated fairly.  I don't want people getting upset with her if she needs to go a little slower.  Or has more questions.  Or is unsure.

I worry for nothing, I am sure.  But I am her mom, and I can't help it.  I worry just as much about Cainan and Arlington, but in different ways.  Monday was my day to worry about Finley. 

$29,639

Do you see that number?  Do you SEE THAT NUMBER?  That is what we raised at Finley's race this past weekend.  We are BLOWN away.

I know it has been a whole week since you have heard from me, but this past week we were so busy, blogging got pushed aside.  We were in Pennsylvania for the week before the race getting everything ready, and enjoying time with family.

But now, the big day is over.  We had a great day.  60+ volunteers, 3 RDH12 families present, and almost $30,000 raised.  What an amazing day.

I will have pictures from the event soon.  I am waiting for my dad to send them to me in the mail, and then I will post them.  We have a lot of great shots we want to share with everyone.

We cannot thank the city of Connellsville, all the people who attended, and all the volunteers that helped our day go off without a hitch.  We were busy from beginning to end, but the day was beautiful.

Thank you to everyone for making this year more amazing than the last.  We raised DOUBLE what we raised last year.  My goal was $20,000, and we made almost $30,000.  We couldn't have done it without you!

Here is a picture of Finley and Bella - another little girl who has RDH12 LCA.

 Here is a picture of the Kinney family, the Fiore Family and us - all there for our RDH12 kids.

The Race is a comin'

Now that we are in Connellsville, you are going to be sick of me.  Finley's race is one week from today.  We have 199 people registered.  Who is going to be number 200?  They get a special prize!!  Either register online or send in your form.  Monday is the cut off for a guaranteed shirt for race day.  But don't fret - if you don't make it, we will still get you a shirt and you will get it the week after the race.  I promise!

A couple of reminders.

If you have registered to run/walk, please plan on being there between 8:00-8:45 so that we can get you signed in, get your bib number to the timer, and get you to the start.  The 10K run  starts at 9am SHARP, so please come early to sign in.

Please bring a new or slightly used children's book on the race day.  We are donating all the books to Children's Hospital of Pittsburgh on Finley's behalf after the race.  Help us make a huge donation!!

If you have any questions, please contact us.  You can leave a comment here, or email me at rdh12@rdh12.org

See you soon!

Latest RDH12 newsletter

I have been so swamped with race stuff, that I haven't had time to post our latest newsletter.  And since the last newsletter, two more families have joined our ranks.  We are now up to 15 families, 18 children as part of our RDH12 Fund for Sight.  We are REALLY growing.

So - here is our latest newsletter.  Enjoy!!

Happy "Gotcha" Day

Today marks 5 years since Cainan became part of our forever family.  5 years ago, Mat and Aunt Betty stood in a waiting room in Chenzhou, China, waiting to meet the little boy we had only seen pictures of.  A little boy that at 10 months old had a full set of teeth and LOADS of hair.

Mat spent the next week with Cainan in China getting to know him.  Cainan was mistaken for a girl several times because he had such long hair.  He was a good eater, a good sleeper, and a happy boy.

When he came home, he fit in pretty easily.  He did have some struggles from the orphanage.  He had never been exposed to much, so everything startled him, and his first year he was unsettled a lot of the time.  He had never been in grass, or sand, or a stroller, or really outside.  You don't think about it, but he was terrified of everything.

But he could eat!  And he would eat a TON.  He weighed just 14 pounds at 14 months old, but within a few months he caught up.  He didn't walk when we brought him home.  He didn't even know how to crawl.  but he quickly learned.

And of course, because of his cleft lip and palate, he didn't speak.  He said his first word after his surgery "mama".  It was great.  By the time he had his palate repaired at 18 months, he started talking in earnest.

He had a flat head, he wouldn't let anyone but me touch his legs, and his thumbs were tucked in his palms at all times.  We later learned that he was tied in the bed for many hours because they had no way to keep the kids from falling out.  And they would wrap the kids hands to keep them from sucking their hands.  He had no idea how to use his thumbs.

For a year, Cainan wore braces on his hands to stretch his fingers.  He had countless hours of therapies.  He had 6 surgeries on his mouth.  He had tubes placed in his ears.  He had a helmet for 6 months to help round out his head.

And then......once all that was past.....he blossomed.  He settled in, and has become a very easy going, normal 6 years old boy.  He runs, jumps, and laughs.  He loves super heroes, cars, legos, and Toy Story.  He is a blessing to our family.

You would never know this was the same kid Mat picked up in 2007.  I looked at him tonight before he went to sleep, sitting in his bed flipping through a comic book, listening to Magic Tree house on CD.  I wondered if his birth mother thought about him.  I wish she knew what a great kid he is.

Happy "Gotcha" Day little man.  You make us happier every day.

Basket raffle

I know, I know - it has been forever since I posted a picture.  I have been so swamped that I have not remembered to grab the camera!

Arlington and I spent the day at our local town's fireman's muster.  Our local town's fire department turned 100 years old.  Pretty amazing.  It was fun.  I had a booth there and sold raffle tickets for our upcoming basket raffle and we had a little game.  We made $430 for our fund just in those few hours.  Baskets were REALLY popular today!

So - I figured now I have all the information on all the baskets that we are giving away, so I am going to post their pictures and info here tonight.  If you are coming to the race, you can buy basket raffle tickets that day.  You can write a check to the RDH12 Fund for Sight or you can bring cash.

If you CAN'T come to the race, but want to buy tickets, you can!  Take a look at the baskets here, and you can email me at rdh12@rdh12.org and I can talk you through the details.  Or you can go online to our online registration and JUST get basket raffle tickets and pay with your credit card.  Same thing - once I get your basket raffle payment, I will contact you and you can tell me what baskets you want the tickets in. :)  We can get the basket to you - anywhere!

Here is the online registration area for tickets:  BASKET RAFFLE.  

So - we have separated the raffle into two parts this year.  We have a SILVER and a GOLD raffle.  In the Silver raffle, we have the most baskets.  These baskets go for $2/ticket, $5/6 tickets, or $20/25 tickets.  The Gold raffle are our biggest items, so these baskets go for $5/ticket, $40/10 tickets.

First, SILVER RAFFLE

Now for the GOLD BASKETS:

RIGHT NOW

Hi everyone!  Sorry I have been missing for a few days.  All I do is eat, sleep, and breath Finley's 5K race.  August is a month where I really don't do anything else.  The yard gets neglected, and I spend my days inside.  It is sad and great all at the same time.  I am getting so excited for the race and seeing everyone, that I don't mind not being out in the sunshine for a few weeks.

If you know you are coming to Finley's race on August 25th, I need you to RIGHT NOW fill out your form, or register online.  We are turning in our largest shirt order on Monday, August 13th to the printer, and after that I CANNOT guarantee you a shirt.  We will surely try.  Pre-registration will remain open until the 24th.  But the shirt may not be there the day of the race.  And it is part of your registration cost, so we want to make sure you get one.  Please make any checks out to RDH12 Fund for Sight.

So PLEASE, PLEASE, PLEASE.  For my sanity, register for the race TODAY.  If you have lost your form, I have posted it below.  If you right click on the picture, save it, and then open it on your desktop, you can print it out and mail it in.

Or even easier - you can register online: HERE

REGISTRATION

Online registration, you can pay by credit card.  What a nice thing, and so easy.  You are already at your computer.  My feelings will not be hurt if you stop reading the blog and go to register for the race.  I actually prefer it.  Online registration you can chose from your race, or lunch only, or spirit runner, just like you can for the regular form.  AND you can buy basket raffle tickets or just buy extra shirts.  ALL online.  SO SIMPLE.

I have heard from so many people who told me they are coming.  We have a HUGE number of people already registered.  We would LOVE to get to 200 PRE-REGISTERED people - can you help us reach that?  Every cent goes to our foundation for Finley.  Please help us reach our $20,000 goal.

And we need RUNNERS!  Do you run?  Do you have friends that

One whole year

It has been one whole year since we picked up and moved to Massachusetts.  I cannot believe that we have been here a whole year already.

It has been a very busy year, as well.  Actually, I cannot believe it hasn't been 5 years so much has been going on.

The kids started a new school and ended the year with many new friends.  We made new friends and neighbors as well.

Mat started a new job, got a new boss at the new job, and still is at the same job (miracle).

We adopted two dogs both who feel like they have been here forever.  Especially when they are extremely rowdy.

Our yard went from a jungle (in the front) to a nicely planned out landscape that I am very proud of.  The back yard.....well.....still a jungle.  Baby steps.

We are at home here.  We have loved all 6 states we have loved in, but here in the north east, we are truly at home.  I have always wanted to live in New England, and here is where we really belong.

I don't have a broken foot this time!  Do you remember that?  Day one of our move from Connecticut I tripped and twisted my foot and wala!  The Boot for 4 weeks.  Yeehaw.

A good year.  I can't complain about a thing, and I smile when I think about our life here.  We are truly blessed with a slew of wonderful new friends, and a beautiful new house.  And we keep our fingers crossed that we can stay here......forever.

Getting close now

Finley's 5K/10K is getting close now.  We are 22 days away!  It is crunch time, and time for you to send in your registration.

We want this to be our biggest event yet.  We are hoping to make $20,000 this year at this race - can you help us reach that goal?

The day is going to be so fun.  You don't want to miss it.  Finley, and our whole family will be there all day.  We want to see you.  We want to meet you.  We want to thank you for all the support you have shown us these last three years.

If you received a form from us, fill it out now.  If you didn't, but still want to come, you can email me at rdh12@rdh12.org and I can email you a form, OR you can go online and register here:

REGISTRATION

So easy, right?  You can register online, pay by credit card, and you are done.  You can even buy your raffle tickets online if you want to!  We will have them in your race day packet the day of the race, and you can take them and put them in the baskets of your choice.  SO EASY.

So register today.  Next week we are putting in our first shirt order.  We can only guarantee you a shirt on race day if you register by August 12th.  After that, you can still pay the pre-registration cost, but you may not get a shirt the day of.  We will do our best, but the earlier you register, the better your chances.

So come and join us!  Music!  Bounce house!  Face Painting!  Baskets!  Food!  Fun!  You don't want to miss it.

Arlington's photo shoot

Today, I took pictures of Arlington for her summer photoshoot.  She did pretty well, but the girl likes to pose.  I have a hard time catching her in a natural state - she thinks she has to try.  But she is a natural beauty, and I want that to shine through.

So - here are the ones I came up with.  We had a good time, and I think I have my favorites picked out for our wall.

Enjoy!