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:

Tuesday, March 25, 2014

If I write it down, it will be easier

This week has been kind of the pits.  And it is only Tuesday.

As you know, Arlington had broken her foot.  Well Monday, I got a call from the school nurse that she had slipped and fell - again - and she hurt her knee.  She wouldn't move it and couldn't stand.  It was on the SAME SIDE as the broken foot.  Sigh.  They were worried, so they wanted her checked out.  I was subbing - my one day a month - so Mat offered to go and get her.  I called the orthopedic doctor and they wanted to check it out.  We took her in and thankfully it wasn't broken.  She has a very deep bruise in her bone and in her cartilage and fluid on her knee, but the ortho doctor is hoping it will heal within a few weeks.

This morning she was still in a lot of pain and the swelling was worse.  So I didn't make her go to school.  I called the doctor and he agreed to crutches to get her up and moving again.  Took us the whole day to get that taken care of, but by 3pm this afternoon, she was learning how to use them and trying hard not to break anything else.

Fun times.

Today Finley had her annual vision field test.  This test tells us how she sees and where her "dark spots" are in her vision.  The vision field specialist will also give a report to the school on their recommendations for services and accommodations that Finley will need.  This appointment lasted nearly 3 hours - always does - but Finley was a trooper.  She has lost a little more vision, but it wasn't terrible.  We are definitely in the "slow progression" when it comes to her loss.  Which we are very grateful for.  She lost a little more central vision, and a little more peripheral vision.  But very minor.  What changed the most is her vision in her left eye.  It is twice as worse as it was last year.  We knew it was because Finley will actually call it her "bad eye" - and will actually close it sometimes to see things.  We have also noticed that eye "wandering" - she has lost control of it because it has become pretty useless to her.  Even with her glasses on - that eye just is so very weak.  It does look like she has lost some vision in her upper left field - she is showing that in her school work.  The doctor was fascinated by this and wanted to think on its exact cause a little more before she reports on it.  So we will see what she comes up with.  They want Finley to get more vision services at school - so we will see what can be done about that.  (meaning from her teacher from the vision impaired).  They also want her to have a low vision visit where they will do some tests on her to determine what accommodations are the best for her.  We are going to try to do that one near the end of the summer so that it gives us a good start to next year.

This appointment always makes me apprehensive.  I don't like to watch when Finley sits in the big machine and has to hit a buzzer every time she sees the light flash in her field of vision.  The doctor started seeing Finley since she was three, and we just adore her.  She is never allowed to retire.  She is so loving and patient with Finley and she is very nice with me when she has to give me bad news.  So we always leave there feeling okay even when the news isn't good.  We know the disease is progressive.  We know she will go blind.  But knowing that someone is there to help us figure out what she sees and what will work for her to help her see better, is great.

This week we also made a tough decision regarding Finley and school.  Last week we had her IEP meeting, and the team recommended retention for Finley.  Meaning, they would like to see her repeat the second grade.  Before this year, we have always felt this was not the way to go with Finley.  But this year, we have felt otherwise.  We see her struggling academically, emotionally, socially.  It is a bad combination.  She doesn't like school.  She begs not to go every day.  She will tell us it is too hard and that she can't see it.  We have her in counseling to work through her emotions, but it isn't enough.  She is very anxious about what is happening to her vision, and has really started to express how she feels about it.  And what she is worried about.  Which is good!  But it is getting in the way of her learning.  She spends a lot of time worrying, so then she struggles.

So - we were given a few weeks to think on the situation before our next meeting in mid-April.  This past Sunday, Mat and I were sitting around and I asked him what we were waiting for to make the decision.  He said "divine intervention".  So.....since that isn't going to happen, we decided to do it.  We are going to retain Finley in the 2nd grade.  We have not come to this decision lightly, and I wish every minute of every day that I didn't have to make it.

We have talked to Finley about it, and she is pretty upset with us.  Today she and I talked about it and how the decision has been made, and that it was okay to be sad, but that we are doing it anyway.  She made me feel terrible because she just looked out the window and her little lip was quivering.  I about died and took it all back right there.  But I held strong.  She told me she is going to miss her friends.  And she is.  But she will make new ones.  And we will work really hard to keep her with the old ones.

I am trying to look to the future.  She is a girl who is going to need more confidence than all of her friends combined.  That in order for Finley to be independent in the community, she is going to have to feel it.  She is going to have to be strong.  And I think if we keep pushing her into situations she isn't ready to handle because she gives us the "sad eyes" she is going to fail.

Will this fix everything?  No it won't.  There is a chance it won't make a bit of difference.  Heck, there is a chance we can make it worse.  We can't see the future.  All we can do is take the information that the team has given us, and what we see ourselves, and hope we are making the right decision.

Please pray for Finley's little heart while she goes through this.

Saturday, March 22, 2014

Finishing up our Plans

Since I am no good at remembering to whip out the camera for any little old thing we do around here, I am going to distract you.  I can promise to be better in the future, but we all know that is fool hearty.  So what's the point.

Tonight we put our London/Paris trip to bed.  I have been spending quite a bit of time planning it all out, and getting each day organized.  Since we decided we were not going to go with a tour group, it meant a little extra effort on our part to get the trip exactly how we wanted it.  Until today we were hung up on the last place we wanted to travel in France before heading home.  Finley actually helped us with that when she requested to see "more castles".  She will only be little and wanting to pretend to be a princess for a little while longer, so it was easy to give in to her request.

We had let all the kids go through the tour books that our neighbor lent us and they marked all the things they would like to see.  If we followed their lead, we would have to stay in Paris for a year.

We spent the last week narrowing down the choices and then making the trip make sense.  I researched travel and booked tours, and booked cars, and booked trains, and booked tickets.....I even booked a few restaurants for meals.  (Finley wanted hamburgers on her birthday - not as easy to find as you would think).

We are flying into London first - it was actually cheaper to fly in and out of London than in and out of Paris, so we will begin and end here.  We will be in London for 4 1/2 days before taking a high speed train to Paris.  (which Mat tells me goes under the water.  Not a fan of that).  Then we are in Paris 6 1/2 days.  Then back to London for one more day and then home.  A nice long vacation - but I am sure it will be nothing more than a taste of what those two cities have to offer.

A friend of mine lent us a CD that will speak French to us while we ride in the car so we can learn how to pronounce some things.  Something tells me that even with practice, I am going to be hopeless.  The kids are going to take an "Introduction to French" class that our Parks and Rec department is offering this spring for fun.

And in the mean time - we are working on how to get Finley ready to travel.  Her braille teacher is putting together a picture book for her so she can study all the things we are seeing up close.  Her classroom teacher and her aide loaned her books on Monet (who lived in France and went blind at the end of his life but continued to paint).  Her orientation and movement specialist is going to help me figure out the best way for her to navigate the busy city, buses, and subways when she doesn't want to use her cane.  (although my understanding is that she is going to have to give in to that a little bit).  We are all going to make sure this will be the trip she wanted (which in Finleys eyes means just getting a beret)

One of the most exciting things I was able to figure out for us was to take her to Giverny - which is where Monet lived, and where he painted his famous water lily paintings.  We get to see his grounds, and the pond and bridge from all of his famous paintings, and Finley is very excited about that.  We all are.

We are looking forward to this trip of a lifetime for all of us.  I am excited we decided to go with our gut, and not to a tour group and make the trip what we wanted.  I hope Finley comes home with memories she will always remember whether she can see or not.

Wednesday, March 19, 2014

Never Boring

When I come to the end of my life, I plan on saying "whew!  what a ride".  Life around our house is never dull.

Today was Finley's IEP meeting.  I really don't have much to say on the subject because I felt that it went very well.  Her team is very large, and I think we worked well this morning to come up with some plans for Finley and Mat and I left with good things to think about.  We have to get back together in a few weeks to finish her plan for next year, and I was grateful to be given more time to make sure we get it right.

In other news, Monday Arlington fell at school and hurt her foot.  She was really complaining how much her foot was hurting Monday night, but  - being a dramatic child - I didn't believe it was that bad.  I told her she should rest it overnight and then we could see what the morning brought.

Tuesday morning - she didn't want to put any weight on it.  I had no idea how she would function at school, so I let her stay home and we called the doctor.  We went in for x-rays.  The doctor said that it looked broken, but she wanted radiology to review it.  In the mean time, she was put in a boot - which she hated.

Today she went to school in the boot and did pretty well.  I got the call from the doctor and she wanted Arlington to see an orthopedic doctor and review her case.  By some miracle we got in this afternoon.  He looked at her x-rays and said she had two breaks.  One in her growth plate and the other by her ankle.  So - the boot stays.  The fractures are small, so he wants to check her again in 2 weeks and see how she is.


Sunday, March 16, 2014

Bonjour! And other French words

Okay - that is the only French word I know.  I took Spanish in high school.  French seemed too scary.

A few weeks ago, we asked Finley if she could go anywhere in the world, where would she like to go.  Her first thought was Paris.  She wanted to go to Paris and see the Eiffel Tower.

This made Mat and I pause and think.  We know that her vision is getting worse.  She seems to have had significant changes this year, and it is showing.  We know a cure is in her future, but it won't bring back what she lost.

And that cure isn't something we can depend on until she actually has it.  Until then, she is just a little girl going blind slowly but surely.

So we asked her to make a list.  All the places she would like to see before her vision is gone.  The list was pretty hysterical.  It started out good with places like France, Leaning Tower of Pisa, Japan, and so on.  Then it got a little stranger when she asked to go to Connecticut (where we just lived and is 1 hour away and we are there all the time) and her old home in Florida. But then she picked places like Colorado and Hawaii which are both equally beautiful.   And then it got down right funny when she wanted to go to Idaho.  Idaho??  When we asked her why, she said she wanted to see a cow.  You know - since we don't already live in the country and have neighbors who own them.  Where she can see a cow for free.  No - Idaho has some kind of special cows.

We hung her list up on our kitchen bulletin board.  And then Mat and I started to talk.  What if we made one trip a reality this summer?  Waiting didn't seem like a good option because we don't know what is going to happen from year to year with her sight.  Right now her vision is still good enough that I think taking a trip - she will get a good visual memory out of it.

So we took the leap.  We decided to go to PAris this summer.  And London.  We are going to go this summer for 13 glorious days.  We have been hard at work over the last few weeks getting everything booked and getting the kid's passports.  We have a pretty good idea what we are doing.  We decided to stay in apartments in both London and Paris because we have 5 people AND we need more space.  We are getting pretty excited.

Mat and Cainan are the only ones who have ever traveled abroad.  And Cainan was too little to remember.  I hate to fly, but I think my excitement of getting to do this for Finley will kill most of the jitters.  I still can't believe we were able to make this a reality for our girl.  For all of our kids.

So, in a few months we will say "au revoir" and head over to Europe.  Hey - I know two French words!  We can't wait.

Thursday, March 6, 2014

What a week

This week needs to end.  It is Thursday and I feel like it has been a month since Monday.

This week started out well - got up on Monday morning, everyone healthy. Monday went GREAT.  No problems, no activities.  Got news from my mom that my Grandma's chemo session went well and her blood levels were looking good.

Tuesday - same thing.  Started great.  Got Arlington off to school on the bus then drove Finley and Cainan to school because she had to take her Diorama:

I was also volunteering in Cainan's class on Tuesday.  I was looking forward to seeing the kids - he has quite a few little cuties in there -  and seeing what his class was up to.  

I came home from volunteering and as soon as I walk in the house, I am hit with a smell I can't place.  My first thought is that I left my little space heater on and it was making that smell because it was leaning on something it was burning.  Nope - that wasn't it.

My second thought was the dogs had done something.  They didn't look guilty, but I started to roam the house looking everywhere.  Nope - that wasn't it.

So - I started to relax.  I had started a big project before I left, and had tons of things all over the floor - I thought maybe that was what I was smelling (I really couldn't place the smell) - maybe something in my millions of piles of papers, braille stuff, etc. that I was organizing.  That must be it.  

I went into the bathroom and I heard it.  Running water.  It sounded like it was coming from our floor board (baseboard heater).  This wall is also against the outside wall, and I know there are very few instances where pipes are in outside walls.  I thought it could be from the roof - so much ice - maybe it was melting.  But it just sounded so consistent that I just didn't know.

Then it hit me.  We had problems about two months ago with freezing pipes in our master bedroom.  It has been so cold for so long that even the best built houses are having freezing problems.  I went down into the basement to see if I could locate the problem.  When we discovered it last time, the pipe was ice cold that lead to the master bedroom.  But when I touched it - it was hot.  Hmmmmmm.  I looked everywhere.  The smell was strong in the basement, but everything seemed to be working.  Boiler - check.  Water - check.  What was going on?

Dogs were following me all around - no help at all.  They thought it was fun going all around the house.  "What are you looking for mama?  A ball?  Did you hide a ball?".  Dumbos.  Why couldn't they tell me why I left a good smelling house, and came back to this?

I came back upstairs and sat down.  It was driving me nuts, but so far I have found nothing.  I was being paranoid.  The pipes were obviously not frozen because they were warm.  Right?


I went to our bedroom to put some laundry away and I was hit immediately with the smell when I opened the door.  I was immediately filled with dread.  I started in the main part of the bedroom - nothing.  I went into the bathroom.  Nothing.  Then I went into our sitting area and as soon as I stepped on the carpet I knew.  Squish.  I looked at the baseboard in the corner, and there was water all around it.  The carpet was soaked and the smell very strong.

My first call was to Mat.  I had no idea how to shut off the water because we have a stupid well.  So - he took his best guess, and I went down into the basement and tried it.  Nope - didn't work.  So he told me to call the plumber.

We have a local plumber that is great.  He helped us last year when our water heater decided to die and flood our basement.  So I called and they put him on the phone.  He talked me through shutting off the boiler and the water (unfortunately both needed to be shut down to stop the flow of water) and in the mean time had his guys on their way (he is local, so it was less than 10 minutes).

They got here and were able to discover the problem pretty quickly.  We were lucky on a lot of levels.  1) I was at home and not gone for a whole day.  2) a part on our boiler had malfunctioned or we would have had a lot (a LOT) more water.  3) the break was above the carpet and not deep under the floor, so they could get to it easily.

Within a few hours, they had the pipe fixed and the water/heat back on.  They told me the smell was antifreeze that was in the lines.  They told me that the part on the boiler that had malfunctioned would have to be replaced, but that it was working enough that it could wait for them to come back.  They told me that they would have to come back on Friday and re-antifreeze the lines (since it would take 4-5 hours to do that).

As long as we were not going to flood and we had water and heat - I didn't care.  And it wasn't even that expensive.  Whew.

They cranked up the heat and told me it would take a few hours and that we were to leave the bedroom at atleast 68 degrees until they came back on Friday to treat the lines.  

At 5pm - 4 hours after they left - I went into the bedroom, and the thermostat read 61 degrees.  I felt the base boards - nothing.  GREAT.  I went into the basement - pipes were cold.  GREAT.  I called the plumber and he came right back and found that we had to have our lines purged of air.  Took him about an hour (during the time we were supposed to be at Cainan's Karate class) to get it up and running.  He came up to report that the pump was about dead (the one to kickstart the master bedroom's heat) and that it should be replaced.

Super great.

But we had heat again.  

The smell and wetness were still there, so I called Stanley Steamer to come out and see what they could do.  They told me they couldn't do anything while the carpet was wet, but that even if it dries, the chances of us not getting mold and not having that smell long term - not good.  They suggested we replaced the carpet.

Mat wanted to try a dehumidifier first.  AFter all - it is winter - the air is very dry - so he felt our chances of problems were very low.  So - we drag out the dehumidifier just to find out that it is no longer working.  It has breathed its last breath and would not be helping us at.all.

Where is the hidden camera.

Wednesday morning - Mat and I wake up and hear running water again.  This time behind the bed.  I about died.  I thought we had another pipe burst in the night (since it was down to about -2 degrees outside).  I called the plumber and he was pretty sure it was just the sound of air in the system (since we didn't have any water leaking on the floor this time), but he advised me to shut down the heat in that room and he would send someone out.

And it was just air.  So.Glad.  I thanked them for easing my panic and that we hopefully would not need to see them again until Friday.

Finley did not go to school on Wednesday because she woke up sick and miserable.  She wasn't running a fever, but she was all stuffed up and crying, and when she gets in this mind set, it is very hard to get her to school and for her to stay there.  So - instead of torturing the teacher, and me, I kept her home.  She did lay around all day and did rest.  But her staying home, and having to wait for the plumber threw a big wrench in my day.  I was supposed to meet with Finley's braille teacher.  Then I was supposed to work in the Library.  Then I was supposed to meet up with one of our donors for our June event.  All had to be canceled.

But we had heat!  And water!  And no leaking!!

I made myself a sandwich for lunch once Finley was settled.  A yummy, Islay's ham sandwich.  People who don't live in the Western PA area will not understand how delicious this ham is.  And how I painstakingly brought it back from my last trip to Connellsville because I can't get it anywhere else.  After a rough few days, I was looking forward to sitting for a few minutes and eating.

The door bell rang.  I had to leave my sandwich.  Which was made of meat.

Do you see where this is going?

Even though I put it in the MIDDLE of my counter, Scooby still managed to get it and eat it.  Whole thing.  Then he just sat there looking at me daring me to accuse him of doing anything wrong.


To top off my day, I got an email from Finley's braille teacher.  We couldn't meet that morning, but she didn't want me to have to wait to tell me that they had noticed a change in Finley's vision at school.  She took these pictures:

She has started writing on the right side of the paper.  Even with a guide on the left - she seems to not be seeing the left upper part of the paper.  The braille teacher is guessing that she has had a significant change in her left field of vision.  Finley was not aware that she was doing this, and when it was brought to her attention, she was surprised.

This always tightens our chest.  We go along for so long that we relax about Finley, even if it is just a little bit.  We have not seen this before so this really, well, stinks.  Finley has a vision field test on the 25th of March, so we will take this along and then see what the vision field results are, and go from there.

Stupid research needs to hurry up.

Today tried to redeem itself, and it went pretty well.  Thursdays are always busy because Finley has gymnastics and it involves me taking all 3 kids for 2 hours.  Thank God for electronics.

So we will see what happens tomorrow when the plumber returns.  He is hoping for no surprises once he starts replacing parts and getting all the pipes squared away.  But the way this week is going - I am thinking that surprises are in store.

Monday, March 3, 2014

Arlington's Birthday Party

Since Arlington's birthday always hits our winter break here in Massachsetts, we have been having her birthday party with her friends a few weeks late each year.

This year she wanted another sleep over party.  Obviously I didn't learn my lesson from the last time, because we said yes.  As long as she kept it to 5 girls.  (Last year she had 10 and that didn't work out so well).

So she had her 5 besties here Saturday afternoon to Sunday morning this past weekend.  She wanted a Hollywood theme party this year.  Worked out great, since it was the same weekend as the oscars!  She is definitely a pre-teen, so this party made sense.

They had a great time and were all dead tired after staying up until 4:30 in the morning.  We took just a few pictures.  Enjoy!

The decorations:

 The friends: