Soccer

Today Finley and Cainan had their first soccer practice today.  They had a great time and are looking forward to going back again next week.  They are on two different "teams".  Finley is with our neighbor, Andy.  His daughter, "M" is also on the team so that helps as well.  I was glad to see that because he knows about Finley's vision, so I know he will be patient with her and understand when she needs a little extra help keeping up.

But they did great.  Last night we bought their balls, their shin guards, and their cleats.  They were excited and liked running around.  By the end of the practice, they were happy and tired.

Here are the pictures of Finley and Cainan playing.  Finley first:

Finley got the idea pretty quickly, and seemed to be having fun.  When they played their little game, she got the ball several times and dribbled it.  It was great to see.  Only once did she go the wrong way (ha) and when her team mate encouraged her to turn around, she patted him on the shoulder and told him to take the ball.  It was pretty cute.

 

Cainan next:

Cainan had a great time as well.  Ran all around and tried his best.  He was a little nervous because he wasn't sure what to do sometimes, but he stuck with it.  He did not make much contact with the ball during their little game at the end, but he will get better.  Arlington was the same way at first - she didn't want to get kicked, so she didn't go near the action.  We had to explain that is what the shin guards were for, and then she was fine.  He will be the same.  I am just glad he liked it.

Arlington came along this morning as well too.  Did a good job on the sidelines.  Walked the track a few times around and got some fresh air and exercise.  It was a great morning.

The rest of the day was spent outside.  It is cool today, but not too cold.  Arlington and Finley spent the day with the neighborhood girls.  We are so lucky to have 3 other little girls right in our neighborhood.  I think they spent about 5 hours together this afternoon just running back and forth to each other's houses.  It is great.  Cainan hung out with us for the most part, playing with them occasionally.  We wish there was another little boy on the block for him.  But he did great just digging in the dirt and keeping us company while we worked.

He even dug for worms.  I was amazed to watch him pick 3-4 of them up bare handed and carry them around.  He has really changed.  Such a boy.  He kept the worms as "pets" for most of the afternoon in a bucket full of dirt, and then released them into the yard before we came in for the night.

We had a great day.  Mat and I celebrated getting the front yard raked and seeded with some Kimball farms ice cream and a movie.  Tomorrow we are hopeful to finish up the front yard planting and mulching for good. 

Tennis time

 Arlington had her first tennis lesson today.

She was looking for a fall sport, and when I asked her what she wanted to try, she said tennis.  She has been talking about it for awhile, so we decided to try it.

We found a place near by that does lessons through the fall and then moved them indoors in the winter.  So - if all goes well, she will be set until spring when softball and lacrosse start.

The lessons had 5 other little kids.  She did pretty well.  She hasn't ever really played before - just here and there.  She really seemed to like it. 

I am glad she isn't afraid to try new things.  I wasn't really a sports girl growing up.  I did softball, and that was about it.  But Arlington has tried them all.  And the only one she really didn't enjoy was soccer. 

 Arlington's present for reading her next set of books arrived the other day.

Yes - it is Harry Potter related.  It is Harry's quidditch robes and the snitch. 

She has to read one book for every $1 the item she wishes for cost.  This has worked well, this bribe.  :)  She reads much faster if there is a reward at the end. 

Tomorrow the littles start fall soccer.  They haven't played before, so they are pretty excited.  Cainan is a bit nervous, as usual.  But tonight we got their soccer balls, their cleats and their shin pads, so they are all set.  Should be interesting.....

I forgot

It is 10pm and I just remembered I never wrote a blog post for today.  So sad, I know.  But I am tired now, so I will blog tomorrow.  We have been keeping so busy.  Today I had a meeting to sign up to volunteer in Finley's class.  It is a new world for me, this staying at home thing.  But volunteering will help.  I am actually really looking forward to it.  I will volunteer 2 Tuesdays a month in her class helping with a reading activity and then every Wednesday I will do a Braille lesson with the class.  It is going to be fun.

Tomorrow I will blog more.  I promise.  I got busy finishing up the last of the thank yous for the Bike Walk Run (for all the people who donated and couldn't come) and going through all the school notes that I have received in the last few days, and my brain is fried.

Have a great night.

Retina Rockstar

Today Finley had her biannual checkup at the retinal specialist.  For those of you who may be new to the blog, every 6 months Finley sees a specialist that deals with people who have her condition and people like her.  Mostly, it is people KIND of like her - older folks who are losing their vision to macular degeneration.

But among the older folks and many doctors at the Yale New Have Eye Center (fabulous place by the way - supported and built completely by the Lions) is Finley's pediatric retinal specialist.

We originally started with a doctor in Boston two years ago.  But we didn't like her.  She was not a people person, which I thought was weird for a person in pediatrics.  But she is older, and close to retirement, so I will try and give her a break.  Try.

So we switched.  And for the last 1 1/2 years, we have been going to Dr. Huang at Yale.  And we love him.  He is young, and very interested in research in retinal diseases, and actually is involved with some of the research at the University of Penn.  He knows our Dr. Bennett.  So - we have stuck with him.

Finley is kind of a rock star when she goes to these appointments.  She has a rare condition (LCA) with an even more rare type (RDH12) so when she comes to the office, we see a TON of people.  We don't mind.  It helps spread the word and it helps teach others about LCA.  We are not ones to keep quiet about it, that is for sure.  I am happy to talk about Finley and what we are doing to cure her and what it is like for her with the vision she has (what we know, anyway).  So today was a record.  The doctor had about 20 people during Finley's appointment.  Medical students, residents, etc. all came to ask questions and listen to her appointment.  Finley did her best to show off.  Dr. Huang asked a lot of questions about where we are in our research efforts and how many families we have gathered so far.  So it was a great appointment.

Today, Finley and I drove nearly 3 hours for her appointment (each way) but it was worth the trip.  Today's appointment showed that there has been very little change in her vision.  Her vision last February was 20/200 in one eye and 20/100 in the other.  Now they are 20/200 equally.  And, as most of you know, her vision is not correctable with glasses.  Normal vision is 20/20.  So - her vision is pretty blurry.

But there has been NO increase in her "black areas" in her retinas.  That means that her loss of central vision hasn't gotten any worse.  For the last 6 months - really for the last YEAR - the loss of central vision has remained STABLE.  We are so thankful.

We would like to thank everyone for their prayers for Finley.  We know that God has heard you and has bought us more time to find a cure.  We have also been watching her diet and increasing her intake of antioxidants, which research has shown will help slow the degeneration.  We keep her eyes covered during all waking hours with dark glasses or sunglasses since that has also shown to slow things down.

But we know that you having her in your thoughts and prayers is what sounds the highest when it comes to Finley.  We ask you to continue to help  our fight and continue to pray for Finley.  We thank you for EVERYTHING you have done for our family and our little rock star.

An act of goodness is of itself an act of happiness. No reward coming after the event can compare with the sweet reward that went with it.  

Kindergarten Parent Night

Tonight's post is going to be quick because I was away tonight.  Sorry - no pictures either.  I know you are bummed. (Gigi).

Anyway - tonight was Kindergarten Parent night at the little's school.  I did actually meet some other parents.  People are really friendly here and just walk up to you and introduce themselves and talk to you.  It is nice.  I am getting better about being more forward like that.

We got to hear from the principal about the cirriculum and then the classroom teachers.  I did not realize we would be seeing the teachers at the SAME time - Mat didn't go.  In Salem, they repeated themselves.  Two half hours, same information.  That gives us parents, who have more than one, a chance to listen to whole presentations.  I just assumed it was like that everywhere, so Mat stayed home with the kids.

But, it wasn't, so I split myself the best I could.  I have met and spent time with Finley's teacher, so I spent more time in Cainan's classroom.  It was nice to hear what they were doing and it seems like he is really liking school.  He did have one "Cainan moment" (that is a story for another day) the second day of school, but we talked and he is doing well now.  If you know Cainan, it was NOT a behavior issue.  He has learning needs.  But he is making friends and hanging in there.

I did have a chance to go into Finley's classroom and speak to her 1:1 aide.  They are loving her and Finley is doing great.  The room is well marked, well labeled, and well laid out, so she is getting around well.  Their biggest focus for her this year is social.  Finley can be a bit of a loner, and doesn't always look people in the eye (she isn't always sure where to look), so they are pushing that a bit.  So far it is going well.  She has made two little friends and that is so nice to hear.  We are off to a good start.

It really is a great school.  I love both of their teachers.  Finley's teacher is easy going, sweet, and really funny.  Cainan's teacher is young, energetic and very schedule oriented.  They are perfect fits for my kids.

Today Cainan also had his first "trial" class of Karate.  We wanted him to start that up again because he did really like it.  But it wasn't a good fit.  The class was boring and he was not enjoying it.  So, we won't be returning.  We will be looking for another Karate school.  Hopefully we will be as lucky as we were in Salem.