Friday, April 18, 2014

Spring has Sprung

Today is the first day of our spring break.  For the next 12 days, we don't have to get up to an alarm, we don't have to pack lunches or do homework, or go to tons of after school activities.  As much as these breaks drive me crazy because we don't finish school until the end of June - I do like them for those reasons.

Today - we stayed home.  Mat wasn't off from work, so the kids and I spent the morning tidying the house some and getting ready for Easter.  This afternoon we spent 6 hours outside in the yard.  The three of them played great together - no fighting or crying - all afternoon.  I had a chance to do some serious yard work and get a lot of projects done that I have been itching to do.  The yard looks much better, and the kids went to bed tired.  Even the dogs ran around outside afternoon and now they are happily sleeping on the floor.

I love spring in the yard.  Yes, there is a lot of clean up work to do from the winter.  (oh the leaves!)  But to watch those plants peek through the ground and then grown leaps and bounds each day - it truly is amazing to see.  And after a long (long) winter, the kids have wanted nothing more than to be outside riding their bikes, swinging on the swings, and just generally running around the yard.  We are lucky we have a large yard and are tucked away from streets, so they can be pretty free.  AND our yards all join in our neighborhood, so they can run from friend to friends house without every crossing a street.  I love it.

Here are some pictures of our day.  Enjoy!











Wednesday, April 16, 2014

A Good Day

Today was a good day.  This morning we had Finley's IEP meeting and it went really, really well.  Mat and I went in with a list of things we wanted to put in the IEP and came out with all of them in there.  And even better - the team was already predicting the same wants, and they had already put a lot of things in place.

We learned how much work Finley's teacher and aide are doing to keep her going through the day.  They working like a well oiled machine together and we were very pleased with what they had to say.  The whole meeting stayed light and there was a lot of laughter and sharing of stories.  We left there feeling pretty good and pretty relaxed.

Mat and I even went out to lunch afterwards to celebrate the success.  So different than last year's IEP meeting.  We feel like the team is much more in control, and working well together and that has made a big difference.  I left there pretty happy that Finley will have the same teacher next year (and the same team) because it went so well.  For the first time, I didn't feel sad that she won't be moving on to 3rd grade with her peers.  She is in a good place.

Happy!

Her teacher was a rock start at the meeting today.  She really fought for Finley and is going to work hard to get Finley extra help in Math next year which she really needs.  She is even going to help us gather materials to help us work with her over the summer so that she is off to a great start in the fall.  AND - just yesterday, she made something for Finley that was so special, that when I shared it at the meeting today, everyone cried.  Her teacher was worried about Finley's feelings about being a failure (which is what Finley has expressed to us how she feels about repeating 2nd grade) and she wanted to try and come up with something that would show Finley that she has a lot of people who are on her side.

So she made this.

And she gave every member of Finley's team a little puzzle piece charm (including Finley).  We are to keep them with us, and Finley can fit her puzzle piece into ours.  And each one came with this little saying.

Isn't that the best??  Finley was so excited about it.  She couldn't wait to pass them out to everyone.  Her teacher was really winning points with this one.

So - things, today, are good.  We are getting ready to go into Easter and Spring Break, and take some time to visit family in Pennsylvania for a few days.  We are looking forward to not having to get up early for 10 days and just relaxing.

Of course, Mother Nature decided that she wanted to show us that winter wasn't quite over yet this morning.

My poor plants.

Wednesday, April 9, 2014

The more we learn

Today Finley had another Vision Field test appointment.  If you read our post after her last one, Dr. Mayer wanted to see her again to review some other areas of her field due to questions we had about how she was seeing.  Dr. Maybe had started to plot our her vision field after the last appointment, and had some concerns, so she called us back in.

Finley was a trooper.  She knows she only has to go to this appointment once a year, so to go twice in less than 3 weeks - she wasn't thrilled.  But I bribed her, and she did great. :)

Tuesday we will receive the "official" report from the doctor about all of her findings and her recommendations, but we did leave with more information than we had.  The doctor spent more time on her peripheral fields and trying to see what might be causing Finley to completely ignore the top left corner of her paper.

It seems that her peripheral fields are intact - which are good.  This does not solve the mystery, but the doctor had several theories that seemed to fit.  1) Finley's loss of central vision is quite vast when she is up close and personal with a piece of paper (I will explain in a minute).  2) she is left handed.  3) her left eye is very weak.  Dr. Mayer believes that with all of these things working against her, that probably explains why she is writing the way she is.  Only time will tell, and she thinks Finley will just have to be taught to be more aware of it and learn to scan better.  Also she suggested a tactile line be placed on the left hand side of the page that Finley can feel with her fingers to help guide her to line up correctly.


So.  To put things into a language I could understand, Dr. Mayer drew a picture.  She said if you could lay Finley's vision out on an 8x11 piece of paper, then the picture I attached to this email would be it.  With Finley sitting around 12 inches away from a piece of 8x11 paper, the WHITE areas of the page represent what she CAN see, and the BLACK areas of the page is where she is blind.  Meaning she sees nothing there when she centrally fixates on a page.  So.  If she is starting at a picture - she doesn't see ANYTHING on the rest of the page unless she scans.



Finley does scan, though.  I watched her during the test.  (she tried to cheat.  a lot).  Especially with the left eye.  It is human instinct to try and "Search" for what we seek, and so naturally that helps her when she is looking at things at school.  But it is a lot of work, and tiring on her eyes.  The doctor said that the amount of information she must seek and find on a page with her vision like this is overwhelming and exhausting to her eyes.

Where does this leave us?  Who the heck knows. I was shocked when I saw it explained like this.   But at least now we have a better idea of what she sees when she looks at a worksheet, or a book, or anything on her desk.  Now she will have to have strategies put in place to help her learn to use her vision to the best of her ability, but also not to the point that it becomes more work than it is worth.

Wednesday, April 2, 2014

Meatloaf

True to my word, today I took Finley (and the other two kiddos) to the American Girl store so that she could get her present for staying in 2nd grade.

She wanted a little dog named Meatloaf.  I got lucky - it was on sale for $10 - a win/win.

Today was also Finley's conference with her teacher.  It was a good conference.  It gave the teacher and I a chance to talk about next year a bit, and what is going on with Finley right now and what we would like to add to the IEP to support her academically next year.  We were on the same page, and it was great.  Made me feel good about our decision.

Tuesday, April 1, 2014

No one will ever say her stubborness didn't pay off



Finley told me today that she is fine with "round two" of second grade.  And she felt that her saying that should earn her a present.  What a riot!

So - after checking in with her therapist to make sure this was an okay thing to give in to, we decided to give in.  I asked her what she wanted, and she wanted a dog from the American Girl store.  It isn't an expensive want, so we decided to go ahead and do this for her.  She promised me that this is the end of it - that we can continue to talk about how she feels about it, but the decision is made.  And she agreed.

For now.


Sunday, March 30, 2014

The Annual Dinner Dance

Each year, one of our powerhouse families in our RDH12 Foundation does a dinner dance.  They always raise an incredible amount of money for our group, and we have attended the last three years.  We have so much fun, and are so glad that the kids get a chance to play together.

Last night was this year's dinner dance, and this year the Fiore family raised over $26,000 for our Foundation.  Amazing.  We had a great time, and I took some pictures.

We are so grateful for them.  We are so happy that Bella and Finley will grow up knowing each other and being able to share with each other what they are going through.  No one will understand them like they understand them.  So very lucky.

Enjoy the pictures!  The event was beautiful, the food amazing, and the kids had a blast.

The three lovely ladies.  Finley is participating in a Flat Stanley project, so he came along:
 Cainan and A:
 The girls held hands all night:
 The hors d'oeuvres table gets set up:
 The basket raffle table - there were over 50 of them!

 The room was huge, and beautiful:

 Mike and Maria - Bella's parents:

 Finley watching it rain outside one of the big windows:
 The three girls:



 Arlington took our picture:


 This girl barely sat down all night.  She just wanted to dance:

 Mike and Maria talking about the Research:
 Maria giving an update on Bella:
 Bella's teacher for the vision impaired.  We would be lost without our TVIs:





 Bella and her TVI:
 The crowd:

 The ice cream bar!




 The morning after: