A post all his own

I realize that Monday was Finley's birthday, so she got a post just for her.  Tuesday Arlington had done something fun, so she wanted to post it on the blog - so that post was all her.

So today is Cainan's day.

 Cainan is turning more and more into a boy every day.

 His newest passtime - jumping off the couch pretending he is Spiderman.

 Yes, yes.  I know this is not a safe activity.  I don't love it.  But he still does it.

Cainan is still our earliest riser.

But he is also our quietest.  He gets up, goes to the potty, then goes back to his room to play without disturbing a sole.

He loves to tell people he is Chinese.  He will tell complete strangers.  I am glad he is proud of his heritage.

We are coming up on our three year anniversary of having Cainan as part of our family.  As of August 13th, it will be three years since the first time Mat met him.  Amazing.  I cannot say enough about how different he is now.

 I still remember the first time we saw his little face.  He was 10 months old, and those big brown eyes were shining back at us from the computer screen.  Here he is just a few days old - just arrived at the orphanage:

We have this outfit to show him someday.  His earliest clothes.

It is like he has always been with us.  We can't imagine our family without him.

I love the fact that we will get to watch him grow, turn into a wonderful young man.  That he will always be a protector of his sisters.

I hope he always stays the gentle soul who loves to eat.  I hope he continues to become more and more outgoing and confident in himself.  I always hope he has good friends he can count on.

 I hope his worries stay small and his dreams grow big.  That he realizes that we support him no matter what.

We love you Cainan.

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Okay - even though this post is about Cainan, our BBQ for Finley is only 1 week away.  I have to say - we are going to have a WONDERFUL turnout!  I cannot believe the response!  Remember that walk-ins are welcome.  But if you think you can join us - please let us know!  Please go HERE and sign up.  OR - you can sign up using this little form right here on the blog.




See?  Wasn't that easy?  You fill it out, and I get a private message that you RSVP'd.  And you didn't have to leave your comfy couch!!

We are going to have wonderful food!  For the kids we will have face painting, balloon animals, hula hoops, crafts.  Each family will get a Finley's Fighter's magnet, and each person can get a bookmark with their name brailled on it.  I am bringing the brailler.

There will also be information about the foundation and about Finley's diagnosis.  We will be happy to answer any questions.  Finley and our family can't wait to see you!  It is from 12-4 - open house.  Come any time - stay all afternoon or just a little while.  Your choice!  Just come and join us!!

And we hope that many of you will walk with us in October.  We hope to have the biggest team.  We know how many of you support our family in finding a cure for Finley.  And we thank you.

I have been asked to speak at the Pittsburgh Foundation Fighting Blindness luncheon on August 7th.  I hope to tell them then about all the wonderful support our family has, and how much easier this has been for us because of all of you.

I will see you Tuesday!

Guest Blog Post by Arlington

Arlington and  Mat went to a demolition derby and fireworks show at a local place the other night.  It was......interesting.  We knew Arlington would love it, so that is why they went.  So - since not much is happening right now, except that it was 105 degrees today, I thought I would let Arlington tell you about it.

Daddy and I went to see a monster truck show and fireworks.

First there was a ski race.  Well the cars had the skis as back wheels.  Instead of back wheels they had skis.  And we all took a vote.  Daddy picked 229 I think?  Car 229.  I picked car 84.  Then a police car came out and kept running into the cars and having them spin.  At the end 84 won right before the police car hit him.  I wanted him to win because he had a stuffed animal on the side of his car.  I like stuff animals.  I think it was a wolf.

After that was the bowling.  This took very long.  There were 3 teams.  The animals team was the one who lost.  Well animal is short for the car 84.  There was a partner with him.  He would go backwards.  But they didn't win.  Another guy won.  I forget their name.  The way the game worked was they would set up bowling pins which were cans - like the big ones you see on the road - and then the cars would knock them down.  And some would get a spare and some would get a strike.  The longest was setting the cans back up.  And that is it.

Oh yeah....then we went to go get ice cream.

Then came the flag pole race.  I forget how this worked.  Oh yeah - all the cars would go around a big tire in the middle of the course.  The car would have to go around it one time.  One car - 777 - he, well, another guy lost his tire, and 777 kept being silly and he didn't want to run the race - he just wanted to run over the tire.  He was too far behind so he lost.  They had to go one lap around the thing - the tire - before they finished one lap they would have to....uh.....go around the tire one time.  And they went around 8 times, and who ever finished first and the end was the winner.

 Then it was.......the motorcycles.......maybe the motorcycles were before the flag pole.  No.....they were after the flag pole race.  Um.....and....they were doing cool tricks.  Wait - THAT is when we went to go get the ice cream.  We didn't get to see all the tricks because the ice cream line was VERY long.

 Some of the tricks were the guy on a motorcycle would plop up on his legs and then he would not put his feet on his pedals.  Then he got off and he would push stop and go at the same time.  He then spun in circles making big smoke until his back tired popped off.  I had no idea how he was going to get home because he lost his tire.

 Then there was the demolition derby.  Some of the beat up cars went in it and kept getting more beat up.  The winner would be the one that was still alive at the end.  Well, and, it was the most beat one.  Its back bumper fell off.  Well almost - it was hanging by a string.  How they got out is that a giant truck came that had little hands and would pick up the cars and put them in a row.  There was this guy that looked like another guy - I thought they were twins - and they were riding in the cars.  And the guys tried to get out but couldn't, so another guy had to run behind him because his car that fell apart.

 There was a little kid that helped pick up the stuff from the cars.  He brought it over to a place - I don't know what it is called - but....... (I lost her)

 Then there was a trailer race.  This went on until all the trailers were knocked off the back of the truck.  Or until they ran out of gas.  The last one alive would win.  There was one truck that had a giant camper attached to it.  And there was one that only had two wheels behind it.  There was a guy who said "I'm losing my cool".  That is what the sign on the side of his truck said.  I hoped he would win, but everyone else wanted him to lose.

 The first trailer that got knocked off - guess what?  It was the camper one.  It got crushed to pieces and you could see inside of it.  One guy - nobody touched him and his trailer fell off.  That was really fun.

 And guess what?  The winner was "I'm losing my cool".  I hoped he would win.

 Then the fireworks.  The first ones were very loud.  And then came the second ones.  BAM!  We stood up, but we could sit down if we wanted to.  So I sat with daddy.  There were a lot of kids there.  Most of them were sitting down.  I thought mommy could hear the fireworks all the way back at our house since it was so loud.  These went on for awhile.  At the end, all the fireworks shoot up at the same time.  Then there would be a little break, and then they would shoot up lots.  This went on for awhile.  I liked the parts where they shot up lots and lots.

 My first favorite was the demolition derby.  My second favorite was the skiing.  Third was the trailer race.

The end.

See you Saturday!!

Happy 4th Birthday Finley!

Today is Finley's birthday

 I can hardly believe that our youngest is 4 years old.

She has gone by many nicknames in her short life.

 Finn.  Finney.  Finmato.  Finmiester.  Finnster.  Rotten.

You get the idea.

 She loves baby dolls most as toys.  She loves to cuddle and hug and kiss.  She can be wild but also can be sweet.

She is a free spirit.  We wouldn't change one thing about her.

This last year has been a trial for our family where Finley is concerned.  While she is none the wiser about what is happening with her vision, I can't help but remember that last year at this time we had no idea this was coming.

But here we are - almost 1 year since her diagnosis.  We have learned so much and have met such wonderful people.

We know that Finley will do great things with her life.  She is smart, and witty, and caring, and funny.

She was born in the middle of an afternoon 1:59pm.  She entered the world quietly, if you believe.  She cried, but was easily settled.  And that is how she spent the first 6 months of her life.  Quiet and cuddly.

 Then......she figured it out.

Finley throws caution to the wind.  We hope that she is always willing to take chances.  To leap with two feet.

We don't know what Finley's vision will be in the future.  But we do know that it will never get in her way of being great.

We love you Finley.  We can't wait to watch you grow.

"If ever these is tomorrow when we're not together, there is something you must always remember.  You are braver than you believe, stronger than you seem, and smarter than you think.  But the most important thing is, even if we're apart, I'll be with you."

Please come to the BBQ on the 17th!!  Go HERE: 

THE BBQ

for details and to sign up!!

-by the way - Lightroom is my new picture editing program (some of you wanted to know).  As you can see - I am totally in love!!  My husband rocks.

See you tomorrow!

Finley's birthday celebration #2 and tibits

I know that I never updated you on 6 flags, so I will do that at the end of this post.  The pictures we took were with our little camera and didn't come out well, so I passed on posting those.

Today we celebrated Finley's birthday (again) with Mat's parents.  They have been in visiting us since Wednesday and we have been enjoying their time with us.

While Finley's birthday isn't officially until Monday, we let her open the rest of her presents today.  She was pretty excited about that.

We did take her also to Olive Garden - her restaurant of choice - today for her birthday.  She had her fill of bread and salad - her favorites.

 She opened her presents from her Gramma and Pappy

Her Uncle Zac (they were so awesome Zac!)

Our friends the Kelleys (thanks so much!!)

And us.

(we got her more than just this - the pictures didn't turn out!)

We were going to save our presents to her from us until Monday, but we just decided to do them today - we are so close.

Monday she will be taking her gift card from Aunt Jess and Uncle Tom to Toys R Us for her birthDAY present.  (thanks guys - she can't wait!)

I cannot believe my baby is turning 4.  I will blog again about her on Monday - her true day.

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Anyway - just a few tibits.

I turned 35 this week.  Gray hair found. Boo.  But got Lightroom as a present.  Yay.  moving on.

I got asked to speak at the Pittsburgh Foundations Fighting Blindness luncheon on August 7th.  I was pretty excited about that - love any opportunity to raise awareness for LCA.  I am really nervous as well.

We really had a great time at Six Flags last weekend.  Finley was so much better this year.  She had a great time riding everything.  Even Cainan did better.  He wasn't thrilled about all the rides last year, but did ride more than Finley.  But this year, we all had a fantastic time.  It was a really hot day and we drank about 600 liters of juice, but we stayed for 7 hours and enjoyed every minute.

Finley started horse back riding lessons this week.  Check the post right before this one (dated July 1st) and you can see her riding the horse.  She loved it!

Finley saw the Geneticist for the last time this week.  Check another doctor off the list.  Honestly - Mat knows more about her RDH12 diagnosis than he does.  And we don't plan on having any more children, so we decided that is one doctor we don't have to see.  So yay!

Finley saw her regular eye doctor this week as well.  She sees the retinal specialist once a year and a regular eye doctor once a year - 6 months apart, so we have two checks a year.  Does that make sense?  Anyway - we really love him.  He took some time to look up RHD12 and think it over.  He agrees with us that light (not UV rays) will deminish her vision faster.  So he was on board with trying some "indoor" sunglasses.  We had a long discussion with the optomitrist and he came up with a color he thought would work for now.  So we let her pick some frames (she chose pink).  And we will get them in about a week!  So she will continue the dark sunglasses outdoors, and these all the time indoors.  So we will see.

The bad news we got is that her central vision is now gone.  That was a real bummer.  We have noticed some changes (she seems to be searching more for things, tripping more) and the occupational therapist noticed that she is turning her whole body to look at books.  So......that was kind of disappointing.  We knew this was coming - that it would get worse.  But we were kind of hoping for a few more years.

Mat and I (and BESB) met with the elementary school this week about Finley.  Our school building MAY be rennovated and we want to make sure that we put our input about Finley in there.  It was a really successful meeting and we came out of it feeling that we are on the right track.  The highlight was that they want Finley to come to the school Kindergarten class one day a month next year and spend the day there and get used to the building.  Either her BESB teacher or her orientation and movement specialist will be with her during that time.

The lowlight - Finley is probably going to be fitted for a cane within the next couple of months.  It is time.  We have mixed feelings about it.  But in all honesty - if it stops her from tripping so much and gives her confidence to get around, than so be it.

Cainan has developed a little "stinker" streak.  He is pouting more when he doesn't get his way.  A little personality!  Not that we love it, but it is nice to see it.  He isn't just accepting any more - he is making choices.  He has also started Kumon and that is going well.

Arlington has really been improving her softball skills.  She and her grandparents were playing quite a bit this weekend and she was hitting most of the softballs that came her way!  She went to Bible School this past week.  I wanted Cainan to go as well, but the pre-K was full by the time we got there!  Ah well.  She had a great time there as always.  So many of her school friends go that she loves it.

Tomorrow is my in-laws 37th wedding anniversary.  Happy anniversary to them!  Here is to another 37 years together.

I think that wraps the main points.  I will post again on Monday for Finley's birthday so see you then.  Enjoy your holiday weekend!

Finley on the horse

Just an extra post because some wanted to see Finley's horseback riding lesson.  She did have a good time. 

Here is her new outfit

The hat and boots were from a co-worker of mine who has girls who ride.  That was a nice treat!

Here she is when she first started riding around the ring

She stayed pretty quiet, but did everything her trainer wanted her to do.  In case you didn't know - Finley started riding due to balance issues she has due to her vision.  She she had to do many exercises as well while she was on the horse.

 She did have to sit backward on the horse.  The trainer had her turn all the way around on the horse a few times to help her control her balance.  Finley was not in love with this.

But she did manage to make it all the way around

 They practiced walking over a few different size poles.  The trainer had her have one hand on the reins and one hand on the back of the horse so she could feel the movement over the poles.

She never asked to get off, but she did want to ride over next to me a couple of times.  She was very cooperative, but out of her comfort zone.  The trainer said that was very normal, and that it may take several months to a year before she really takes "joy" in it. 

Great.

She had a really great time.  She was pretty quiet during the ride, but did talk about it non-stop on the way back, and can't wait to try it again.

See you Saturday!!