Monday, January 28, 2013

Out of Sight

Tonight on Nickelodeon was a special called "Out of Sight" about children who are blind and how they view their blindness in a sighted world.  I thought it was very well done.  The children talked about how their blindness doesn't get in their way.  They talked about what they didn't like and what they wished what they could see.  All but one of them went to public school and were doing well.  Only one had an aide.  The kids were well liked, and happy, and funny.

I decided to let Finley stay up and watch it even though it was past her bedtime.  She had crept downstairs anyway - like she sometimes does - to say goodnight one more time.  So I asked her if she wanted to stay and watch.  I think it was harder watching it with her than it would have been otherwise.  She never took her eyes off the screen.  She made comments and asked questions.  She noticed their canes and reminded me that her home cane is "Sugar Stick" and her school cane is "Sugar Cane".  (Not to be mixed up she reminded me).

She talked to me about how other kids at school have glasses.  That they don't take them off, and they help them see.  And she talked about her glasses are there to just protect her eyes, but don't help her see.  She said most kids with glasses don't change to "outside glasses" (her sunglasses) when they go to recess.  But she said this not with regret, but more like it was something special that just she gets to do.  We have made the sunglasses into something fun for her.  She has about 20 different pair - colors, sparkles, big, small, you name it.  So she has never viewed them as a negative.

Her biggest concern was that every kid on the show got in the back seat, and even though most of them were high school age, they weren't driving.  She asked me "how am I going to drive if I am blind?"  I reminded her that her friend "L" has volunteered to drive her anywhere she wants to go, and this cracked her up.  I told her she will always have someone who will help her with what she needs, but that she will be so independent that most of the time she won't need help.

"No worries then mama?"  she asked me.

No worries.

Sunday, January 27, 2013

Last Friday the littles had Crazy Hair day at school.  Finley was really excited about this.  She wanted about 50 ponytails in her hair, but had to settle for 9.

Cainan's hair was a bit tougher.  He has such dark hair - nothing I used showed up very well.  He has silver and blue in his hair, but you can't tell in the picture.  He looks like he has bed head.

This weekend we bunny sat our friend's bunny while they were away at a wedding.  The bunny was really sweet, and the kids loved her.  We had her out playing with her a few times over the weekend, and she liked hopping around the house.  No we are not getting another pet.  We will just bunny sit her whenever we get a chance!

Thursday, January 24, 2013

Update on RDH12 from Mat and Dr. Thompson

Mat finished his blog post for me in the wee hours last night.  Just kidding.  He actually finished it and I hope this helps explain what we learned.

I wanted to say, also, that Mike (our other RDH12 dad that went with Mat) took a framed picture of his daughter Bella and our Finley together, and Dr. Thompson put it on her desk right next to her computer.  She also took our RDH12 magnets for their lab as well.   So now we are right there for her to see each day at work.

Without further ado, here is Mat:

On Monday, Mike Fiore and I had the chance to visit the laboratory of Dr. Debra Thompson at the
University of Michigan. Dr. Thompson was the recipient of the second ever research grant from the RDH12 Fund for Sight and is the leading expert on RDH12 biology. She has also taken the lead in developing the gene therapy for RDH12.

It was a full day. We were given tours of the laboratory, the vivarium (where the mouse work is
conducted), the clinical and diagnostic facilities, and the operating rooms in the hospital. We also got a chance to meet with Dr. Thompson’s many collaborators that work in these diverse areas. The facilities at the University of Michigan and its Kellogg Eye Center provide a comprehensive environment to take a potential therapy all the way from concept to execution. From the lab to the clinic.

When we sat down to discuss the progress of Dr. Thompson’s research, we were quite pleased with
what we heard. Currently her work is focused on ensuring that the gene therapy is safe. She already has the data that shows that by putting RDH12 back into a mouse missing that gene corrects defects in that mouse. The concern is that if the gene therapy expresses RDH12 in the wrong place or in the wrong amount, damage could be done to the eye. Thankfully, the early data seems to indicate that there are no negative consequences.

One topic that we wanted to make sure we covered while we were with Dr. Thompson was the future - where were we headed and when would we get there. Lest we ever forget, our goal is to get this gene therapy into the clinic as soon as possible. We wanted to make sure we were doing everything we could to make that happen. In real practical terms, that means enabling a meeting with the FDA (termed a pre-IND meeting.  IND means Investigational New Drug) to understand from them what they are going to require before they grant permission for a clinical trial. Dr. Thompson felt it was necessary to get more safety data from her current mouse study before visiting the FDA. As a result, we are going to work with her to get her the extra support necessary to speed the delivery of that additional data. We also discussed other laboratory work that we know is going to be required by the FDA. Recognizing that these experiments are a necessity, we wanted to ensure they were happening as soon as possible. Again, Dr. Thompson was receptive to stepping up the timetable for delivering this work. She is going to work with her collaborator, Dr. Ali, to establish a plan for this work so it can be initiated.

Mike and I came away from our visit knowing that our children’s vision is in good hands. We are on the threshold of big things. Our goal is within sight. When we discuss having meetings with the FDA about a clinical trial, they are no longer fanciful ruminations. All of the fund raising we have done is now coming into play. Because of it, we have the resources now to back up these requests for expedited work. When Dr. Thompson tells us that extra personnel will make the difference, we can deliver that to her. We are fortunate to be in that position because of the support of our friends and family. A cure will never come fast enough for us. But we have every reason to believe it is coming.

Wednesday, January 23, 2013

News and cold weather

This week is the coldest we have experienced since we moved to New England.  We were truly spoiled last winter after our "Halloween surprise snow" of 2011 to not really get any snow/cold weather for the rest of the winter.

This year - Mother Nature is back with a vengance.  She is a mean old witch when she wants to be.  Finley will tell you that she is not pleased that she is being required to wear pants every day this week due to the weather.  She is not pleased at all.  Being 5 degrees at the bus stop and a high of 11 - well.....not exactly dress weather.  Thanks Mother Nature for that.

The cold is supposed to last the rest of the week, and then we will see a break.  38!  Heat wave on Sunday!

Right now, Mat is busy writing a blog post for me.  You are going to hear from the man of the house. Eventually.  He writes a sentence or two in between reading emails, playing on his ipod, working, playing on his ipod......he has ADD.  I am sure of it.

He went to visit with our University of Michigan researcher, Dr. Thompson, on Monday.  He and Mike - another RDH12 dad - went and had a wonderful day full of meetings and question and answer sessions.  They took a tour of the lab, and got a lot of answers.  And some great news.  You will have to wait to hear, though, because I want him to tell it.  After all - he is the one who understands it best.  I just looked over at him - he is playing on his ipod.  Yeah - it is going to be awhile.

Tomorrow Arlington and Cainan are going to the orthodontist.  Arlington is in need of braces, I am afraid, and Cainan has quite the underbite.  Tomorrow is just the appointment to take a look and discuss what to do next.  Arlington is mostly worried about still being able to eat cake for her birthday in a few weeks.  She definitely has her priorities straight.

Only two pictures to share today.  I have got to get better about picking up my camera for every day cuteness.  I am finding myself being lazy about this during the winter.  We don't leave the house much after school, so I feel like we don't have anything to photograph.  But that isn't true.  I need to remember that this blog is a journal for our family, and I don't even want to miss out on the mundane.

Finley had a playdate on Sunday.  She and "A" spent some time painting their nails:
 Finley wanted to have a party for Rosie on Saturday.  Arlington was at a playdate, and Cainan was at Kumon with Mat.  Mat took Scooby along for the ride, and Finley felt that Rosie was lonely.  So she did this to her:

Sunday, January 20, 2013

My Liebster Award Post

Here goes my post!  Thank you - Amber and Max for the award!

The rules for the acceptance are:
1) Visit and thank the blogger who nominated you
2) Acknowledge that blogger on your blog and link back
3) Answer the 10 questions posed by the blogger who nominated you
4 ) Select 3 – 5 bloggers for the award
5) Pose 10 new questions to the new nominees
6) Post the award on your blog 

So, here are my answers to the questions posed by Amber and Max

1. What is the reason you started blogging?
       We originally started blogging when we adopted our son, Cainan in 2007.  We felt this would be the easiest way for Mat to tell us what was happening over in China and post pictures of our new little man.  When we returned home, we decided to keep the blog going to use as a memory book for him and for the girls.  Because we have never lived within 600 miles of family since we had children, it has become the perfect way to keep in contact with everyone.
2. What is the most surprising thing that has happened to you since you began blogging?
       I actually have followers!  People who actually come and read about our life.  And since Finley was diagnosed with Lebers Congenital Amaurosis (LCA) we have gained so much support through the blog.
3. What is your proudest moment?
        Starting our foundation.  We were so lost when Finley was diagnosed.  We just wondered around the internet soaking up information, and becoming deeper and deeper aware that nothing was being done for a cure for LCA RDH12.  We started having fundraisers, and the next thing I know, we are an actual 501(c)3 and 2 1/2 years into being a foundation we have raised $800,000 for research.  That makes me proud every time I say it.  We were told we could never do this as a "group of parents" - that we would have to wait for the "big boys" to catch up and fund this for us.  We showed them.
4. What do you find to be the toughest thing about dealing with a child that has a special need?
          Not knowing what her future will hold.  Finley is a full time job.  I am constantly on high alert when we are out to make sure she isn't getting hurt.  She needs help with everything - eating, dressing, homework, daily tasks.  Sometimes I just look at her and sigh.
5. What do you find to be the best thing about dealing with a child with a special need?
        How much she has taught us.  As "needy" as she is, she is twice as strong.  I am her mother, so I constantly worry, but Finley has shown us how full her life is.  She is happy, smart, healthy, and silly.  I can't imagine her being any other way.  This is the hand she was dealt, and she is choosing to not let it run her life.
6. What is your "lazy rainy day" to go plan?
        This is a funny one!  I wish I had lazy days.  While the kids are in school, I work on the foundation or work around the house.  Or volunteer.  But when we are all home, and all together, we make time to watch movies together.  Or we order pizza and put on some music and the kids dance around.  
7. You're a superhero, so what's your name and what's your special power?
       Hmmmm.  I would want to be Storm.  I know - that name is already taken.  I want her powers.  Maybe I could be Cyclone?  This is how my life is anyway!  I make noise where ever I go.  I am easy to get excited - especially when it comes to Finley.  Or politics.
8. What's your most used phrase, either in your blog, your head, to your kids...?
       I say "Awesome" way to much.  "Are you flippin' kidding me" comes out of my mouth way too often.  To the kids? "stop bothering each other".  
9. Do you live by any motto or philosophy?
       Life is 10% of what happens to you and 90% how you deal with it.  My motto for sure.  No one lays down and does nothing for their child.  This is the hand we were dealt.  And we are dealing with it by making sure her life is the best it can be.

The Three blogs I choose are:

          - Jennifer and I became friends when Finley was first diagnosed.  She is a powerful person both in soul and in life.  You will never meet a stronger mama than this one.  You have to read her blog, and meet her family.  She is such a mover for LCA and her son - go check her out.  You will be blown away. 

          -Another family of movers and shakers.  Liam has Oculocutaneous Albinism.  She also runs Liam's Project   to help families who are going through what her family is going through.  She is an amazing mama, and I am so glad we met.  We are lucky to have such support in our community of blindness.
       This mama is a wonderful resource.  I have learned so much from her.  Her daughter, Abby, has Lebers Hereditary Optic Neuropathy - DIFFERENT Lebers than Finley (although I think it might be named after the same man.....).  I cherish her blog post.  Her daughter is slightly older than Finley so I love reading about what accessibility items her daughter uses.  She is an amazing advocate for her daughter, and a force to be reckoned with.  Like all three of my mama's I chose for this award!
Never underestimate the power of a parent.

My 10 questions for them to answer

1. When you first got your child's diagnosis - what was your immediate reaction?
2. Why did you start blogging?
3. What is the best thing you have learned since your child was diagnosed?
4. What are you proudest of?
5. Do you have any regrets?
6. What would you say to a new parent that just was told their child was blind/going blind?
7. How do you balance family life and life with a child with special needs?
8. On a down day - what is your favorite activity?
9. What scares you the most?
10. Do you have a favorite motto or saying?

Have fun!


Friday, January 18, 2013

Another week of being MIA

Man!  I am getting bad!  This week has been me using every free second to search businesses and get things ready to go in the mail for our first round of mailings for Finley's June race.  It is sucking up all my time, but I don't mind.  I am getting excited to get things moving.

One thing that has already arrived for our raffle is pretty exciting.  We received in the mail the other day a Signed Master Chef Apron and Master Chef Cookbook from Christina Ha.  Christina was the winner of Master Chef this year, and - if you remember from my previous post about her - she is blind.  She is a huge inspiration to our family.  We have been in contact back and forth for several months, and she is about the sweetest person on the planet.

I am so excited to have these items for our auction.  So if you are a Master Chef fan - you are going to want to bid on this:

Other things are coming in as well, but I will save those for when we get packages all together.  Another great raffle to look forward too.

Today I had two of my "mommy friend's" daughters here to help me stuff envelopes.  We send out tons and tons of request for products and monetary donations for our events, and packing all those envelopes is very time consuming.  The girls were a huge help.  It took us about 3 hours, but we got most of it done.  One of the girl's asked to take her remaining pile home, and I finished the rest.  The girls were really funny, and I was very grateful for their help.
 This week we also had another snow storm.  It wasn't too bad - we got about 5-6 inches, but because of the timing of the storm school was canceled.  Which was not awesome because Mat was in New York City for the day.  Once the snow stopped in the afternoon, I chased the kids outside to play, and our wonderful neighbor came over and plowed our driveway.  So by the time Mat got home that evening, the kids were good and tired and the drive was clear.

That is the story of my week.  Well - I worked Monday and about died there, and then spent the rest of the week......working.  And volunteering.  It is hard to believe it is the weekend again.  And a 3 day one at that.

Enjoy a few random pictures of the kids!

Finley put her hood up for some reason:

 Brother and sister hanging out together:
 What Finley's hair looks like in the morning:

Monday, January 14, 2013

Rare Disease Day

This year, February 28th will be Rare Disease Day.

Mat plans on going back to Washington DC to meet with legislators about Finley and about other kids with RDH12 LCA.

I know all of my lovely readers know how rare Finley's disease is.  With less than 100 people affected with RDH12 LCA, money isn't flowing in from all angles to cure our girl.

We fight every day for awareness for Rare Diseases.  We want to make awareness for RDH12 LCA so great that it becomes a household name!

Well......we wish.  We want you to tell someone who tells someone who tells someone.  You never know who may be listening.

In 2 1/2 years we have raised closed to 1 million dollars for RDH12 research.  But it isn't enough.  It isn't the only thing that matters.

While we work hard on the cure, we work equally as hard on the awareness.

So visit the Rare Disease Day blog and learn!  Knowledge is power and knowledge will lead to a cure for our girl and kids just like her.


Saturday, January 12, 2013

Online Registration

Yes, it it early, but if you think you will be going to Finley's race here in Massachusetts - you can register online now.  There is also an option to download and print the form and mail it in as well.  Your choice!

But it is out there for those early birds.  First person to register, our 100th, 200th, an so on registrants get a special prize on race day!  So don't delay!

If you want to check out the site - click HERE.    You will find all the information you need as well as a link to online registration.

It is going to be a GREAT day - don't miss it!!

Friday, January 11, 2013

A whole week

I just realized I haven't blogged at all this week.  We are in the January blues.  Back to school, snow on the ground, cold and gloomy days.  Not much to blog about these days.

Arlington was sick at the beginning of the week.  Over the weekend she was at a Girl Scout event, and 4 of the girls got the flu.  She didn't, but she had a headache, stomach ache, sore throat and low grade fever for two days.  So she and I stayed home, hung on the couch, watched movies and bonded.  Yeah.....bonded.

No one else got sick, thank goodness, and Arlington went back to school on Wednesday.

This week I have started working on our race sponsor letters and putting out a small fire.  Hopefully it is resolved, but it took two days worth of phone calls.  See - our small town has a huge "World Cup Soccer Day" every day, and this year? falls on June 15th.  I about died when I found out.  I called the president of the soccer club, and couldn't have gotten a nicer man.  He thinks he will be able to move the date back a week, so we don't have to worry about it.  But I was pretty panicked there.  I really let it upset me.  I think because I have worked alone on this race.  And when I mean alone, I mean without my parent's contacts.  I didn't realize how easy I have it in Connellsville getting that race together.  40 years living in the same community will do that for you.

Thank goodness I have wonderful friends and a wonderful neighborhood that have been helping find who I need to contact.  And I was pretty proud of myself that I got everything I needed to do this race in Massachusetts.  Things were sailing along.......until.  So that is why I lost it.  My wonderful friend Maria got to deal with my tears and hyperventilation, and talk me down off the ledge.

So.....back on track.  Today the sun was shining, and I got to meet my friend Lindsay for lunch.  We are like minded sushi lovers, and I haven't seen her (or had a chance to eat sushi) since before the holidays.  So I was glad to see her.

Down side?  My GPS (and Boston) hates me so I got really, really lost.  It took me over 2 hours to go on a 45 minutes trip.  Luckily Lindsay is patient and easy going, and helped me get where I need to be.  It was quite embarrassing, but I am so glad I got to catch up with her.  She is so fun to be with.

So now on to a busy weekend.  Girl Scout field trip for Arlington, play date for Finley, tennis, Kumon, on and on.

Hopefully I will remember to take some pictures this weekend so you can see that all the kids are still alive and well!

Monday, January 7, 2013

In the works

School is back in full swing now, and we are recovering from the holidays.  Looking forward to the snow melting, the weather getting warmer, and the flowers starting to bloom to get us through the last two months of winter.

This is the time of year that planning begins for our biggest event for Finley.  This year, we are planning two.  Because we have gone completely crazy.

This year we have decided it is time to do an event in the town where we live.  We think we have finally found the right town for that, and we were right.  The support has been amazing.  I hope we never have to move.

I am starting with that event first because we are having that one in June.  June 15th for anyone who lives close to us here in Massachusetts.  I am really looking forward to it.  We are going to mimic our event we have in Connellsville because it has been so successful.

I am starting to find, though, how spoiled I was to have my parent's - who have lived in that town for 40 years - connections.  Really, my friend and Maria and I started doing leg work for this race in September.  Site, tents, tables, garbage pick up, bathroom facilities, timer, music, food......all things that come so easy to us after 4 years of doing Finley's race in Connellsville became quite a "to do" here.

But we did it.  I am proud.  We got all the big things settled, and most for low cost to no cost thanks to come very generous folks.

So - we are on our way.  I am lining up some young people to stuff envelopes and help us advertise at the beginning of next month, and people are signing up to volunteer.  At our Bunco fundraiser we had last Friday (which made $1000 for our Foundation by the way) I handed out "what we need help with" forms to all of the guest and people were so willing to help us get this fundraiser done.

Small town.  Big hearts.

I have had some people ask me about Finley's vision and if it is improving.  I was to state - sadly - that Finley's diagnosis does not allow her vision to get better.  She will never be better without a cure.  She will lose more and more vision until it is completely gone.  Nothing will save her sight besides a cure for her disease.  This is why we work so hard.  We have a very small window to stop her from going blind, so we push with all of our might.

Never under estimate the power of a parent. 

Friday, January 4, 2013


Thursday, Finley and Cainan started gymnastics.  I have been looking for something active for both of them to do over the winter.  Finley had done swimming, and Cainan had done soccer in the fall, but we have a lull now during the winter.  They can't be outside much because most days the temperature is below 30 degrees, and they are going crazy in the house.

Since Arlington has tennis, we were looking for something that was once a week for the littles as well.  They both wanted gymnastics, so I went online today and started researching gymnastic centers around our area.  I think I have found a good one.  This one was also the cheapest of them all (a common theme for our family, I know) which was also a plus.  We get a sibling discount by enrolling them both - score!

Anyway, once I found a day and time that worked for us, I got them all signed up.  Then realized that it started today.  Luckily Arlington has taken gymnastics in the past and had a leotard that fit Finley pretty well, so we were set.

The class was from 5-6pm and will be every Thursday until we decide they don't want to go any more.  You pay by the month and can quit any time, which is nice.  Plus, we can make up a class we miss any other time during the week, which was another reason I chose this place.  I am hoping that they both love it and want to continue for a long time, but Cainan may have to give it up once T-ball starts.  We will have to wait and see.

They both seemed to really like it.  I took the camera, but the gym is huge, and the parent area is kind of far away from where the kids were most of the session, so the pictures aren't great.  We could watch the whole time.  I wish I would have had the video camera because Finley was hilarious.  That girl loves to dance.  There was music playing in the background, and while she was standing in line waiting her turn, she would do a little dance.  If there was a modern dance class around, I would enroll her in that.  She loves to boogie.

Enjoy the pictures:

Finley and Cainan stretching:
 Finley walking on the balance beam.  She was pretty good if she held the instructor's hand:
 Cainan has really good balance:
 Finley trying a low balance beam:
 Crouching Tiger, Hidden Dragon:
 Finley is a little Monkey, so I knew she would like the flipping:

 Waiting in line:

Thursday, January 3, 2013

New Year's Day

New Year's day was our last day of vacation.  I was proud of us that we did more than just sit at home the whole week the kids were home.  Our kids are old enough now that we can go out and do things with them without it being a big undertaking.  The kids said they had a great vacation, so I consider that a win.

I am glad they are going back to school, but sad at the same time.  This vacation was a good one.  There was very little fighting, very little boredom, and a lot of good memories.

New Year's day morning started off with the news that we had a new baby in the family.  Mat and I became an aunt and uncle for the 9th time.  Little baby Addie Ting (Mat's sister Teen's baby) was born this morning at 8:30am.  We were so excited!  She is beautiful and mom and baby are healthy.  She was the second baby born on new year's at this hospital - so close. :)  Hopefully I will share some pictures of our new family addition soon.

Today is also my father in law's birthday.  Two New Year's babies in the family is pretty awesome.  Today Ben turns 70 years young.  We wish him the best birthday yet and are looking forward to celebrating with him the next time we are together.

We had breakfast at home, and de-Christmased the house.  Is that a word?  Probably not.  It was very sad to take all the stuff down, but I was glad to have my parents here to help me.  It went much quicker that way.  We had everything down by the time the Rose Bowl parade started at 11.

The kids enjoyed watching the Rose Bowl parade.  We ate lunch and then we left to go roller skating.  We had a great time.  My kids love roller skating.  Plus, we had tickets where they got in for $1 to skate.  Score.

After skating, we came home and had our traditional new year's meal - sauerkraut, polish sausage, and potatoes.  Yum.  We burned our Bayberry candle.  It was a good day.

Enjoy our pictures from our roller skating adventure.  Happy New Year to all of you!  Have a great start to 2013.

Cainan takes a whirl around the rink:

 Arlington doesn't need help skating any more.  She even has her own skates now:
 Finley loves skating, but she is a maniac:

 My dad helping Cainan go a little faster:

 Finley made a little friend:
 They remind me of two little old ladies with walkers:

 He was really concentrating hard:
 Papa trying to get her to skate a little smoother:

 Grammy took a turn on the roller skates.  She said she hasn't skated in 20 years:

 Yes she is running.  No it didn't end well:

Wednesday, January 2, 2013

New Year's Eve

Today we took the kids to the New England Aquarium.  We have never been there before, and we were looking for something to do while my parents were visiting.  We had a couple of choices.  We thought about going to the Science Center, but Mat and Arlington had recently been there.  We talked about going to a cool village, but 90% of it is outside, and it was only about 25 degrees today.  So, the aquarium it was.

The aquarium was nice.  The kids had a great time.  It is going through major renovations, so that was a bit of a downside.  The construction was taking up the whole center of the aquarium and had displaced many animals.  But it was still fun.

We stayed there for the afternoon (after we had a late breakfast at Panera Bread) and then came home to enjoy New Year's eve.  We ordered pizza, we watched movies, we played Wii, we played games.  Arlington put a million tattoos on all of us.

I let the kids stay up for as long as they thought they could make it.  Cainan, our sleeper, made it to 9pm.  Finley made it to 9:30, and Arlington - our kid that needs very little sleep to function - made it to midnight.  She kept all of us adults awake because I am not sure we would have made it if it wasn't for her.

Here are just a few pictures of our day:

Arlington putting more tattoos on Finley:
 Finley working on a butterfly project that Aunt Renee got her:

 Arlington petting a sting ray at the Aquarium.  The other two were two chicken:
 Baby penguins in a holding tank:

 These two seals stared at the ceiling the whole time we watched them.  We have no idea what they were looking at: