Saturday, October 29, 2011

Started with a walk and ended with a snow

This morning, the family was up bright and early for the VisionWalk in Boston.  Foundations Fighting Blindness holds visionwalks all over the country each year to raise money for retinal diseases.  They are a leading foundation for suppling millions of dollars to people with Retinitis Pigmentosa, Stargardts disease, macular degeneration, and of course, LCA.  When we first found out about Finley, we raised money for Foundations Fighting Blindness.  They are an amazing organization, and we will always be loyal to them.  While we can no longer give them $1000's of dollars, since we have our own foundation to support, we donate to them every year and make this walk.  LCA research would not be where it is today without FFB.

 We wore our Finley's Fighters shirts, and took Scooby and walked the 5K this morning.  It was only about 40 degrees, so we were dressed warm, and walked fast.  Scooby was the hit of the day.  He had his picture taken so many times, you would have thought our little teddy bear was a doggy celebrity.  He was petted and cuddled and picked up so many times that we had a delayed start to the walk, and after the walk, he had the same reaction.  He is a cutie.

After the walk, we came home so that Finley and I could go to a playdate.  One of her new little buddies in Kindergarten invited her over to play.  I stayed with her since this was a new situation, and I am glad I did.  The mom is very sweet and we had a great time talking while the girls played.  We stayed for a little under two hours, but due to the weather, we had to head home.

Around 3pm, it started to snow.  We had originally been told that it was going to start around midnight, so we thought we had the day.  Mat and I jumped in the car with the kids and headed off to do a little last minute shopping.  We have not been really thinking snow boots and snow clothes because - you know -it is OCTOBER.  But alas, we headed to the store for salt and snow boots.  We were not alone, apparently, and the stores were cleaned out.  We came home empty handed of snow boot for Finley and Cainan (Arlington has a pair from last year that still fits her).  It was crazy.

by the time we headed home at 5, the snow was really coming down.  It is sad, really.  The fall foliage was just getting started, and I think this will be the end of it.  We got home and Arlington and the dog wanted to play outside for awhile.  Finley ended up putting on an old pair of Arlington's boots and heading out with them.  Cainan - always fine with watching from a warm house - stayed inside with us.

We had to drag the girls in after 6 - wet, and happy - promising them they could go out again first thing in the morning.  The dog was shivering, but had a good time out there.
Now it is 9:30pm, and it hasn't stopped snowing since 3.  The lights have flickered a few times.  The snow is very wet, and very heavy, and the winds are whipping around.  They went from saying we were getting 1 inch of snow two days ago, to now getting 12 inches.  In October.
Tomorrow there is a Halloween parade in our little town.  It has been moved indoors, which should be interesting.  Disappointing because our Scooby gang will not be allowed to bring their Scooby to the parade.  Thanks to snow.  In October.


Friday, October 28, 2011

Salem Book Sale

After school today, the family (including Scooby) jumped in the car and drove to our old stomping grounds in CT.  On Halloween weekend, there is a big apple festival, basket raffle and book sale in Salem.  Since moving there in 2008, this was my favorite weekend and we looked forward to it every year.

Thankfully, we didn't move that far away that we can still attend some of the activities on this wonderful weekend.  The Apple Festival is tomorrow (and if you live anywhere near Salem, you would be foolish to miss this it is so yummy) along with the basket raffle, and sadly this year we had other Saturday plans we could not get out of.  Next year, I hope to make a weekend out of it.

Anyway - we went for the book sale.  This book sale is huge.  They fill the gym at the local school with 1000's of books.  We go mostly for the kid's books, but we always manage to find a few adult books as well that we haven't read, or haven't listened to (Mat and I listen to a lot of books on CD). 

We came away with 80 children's books (mostly chapter books and classics) and 6 adult books (including two large gardening books) for $30.  $30!!!  And they are in wonderful shape - these books are very, very lightly used.  The kids have their stacks to peruse all weekend long, which is always the best part.

If your local library runs a book sale, you should find out when and attend.  Especially if you have children who love to read, or listen to you read to them.  In a world of computers, ebooks, Ipads, Ipods, and all kinds of electronic ways of reading, I still get joy out of watching my three sit on the floor on a Saturday morning and look at a pile of books - talking about the pictures, or something funny they read.  Nothing beats it.

Thursday, October 27, 2011

Is It October or December?

This evening, after the kids had their bath and were tucked into bed, I looked out the window and this is what I saw:

How long did it take me to put the kids to bed that 2 months went by?  You know, the time in the year when it makes SENSE to snow?
Of course, if that made sense, that would also mean that all the stores wouldn't have been decorated for Christmas since the end of September.

Even Scooby is having an off day.  He has had 3 accidents in the house today -which he hasn't had since he got home.  I think the white stuff is confusing him and he doesn't want to go out there.

Wednesday, October 26, 2011

Meet the Mann Family

I would like to introduce you to our newest American family to our group - Lynn and her family.  Lynn found us in the spring of this year, and she has an amazing story.  Lynn's children, on top of two of the three having RDH12 gene affected LCA, also had a hard start in life.  Now they are doing amazingly well, no doubt to this super momma. 
We are so grateful to have the Mann family with us on this journey.  They live in Arizona and we hope that one day we can convince them to come this way so that we can all meet in person!

Here is their story:
My husband, Joe, and I have 3 children and 2 of them have LCA.  Aiden is going to be 8 next month, Caleb is 5, and Gabby is 2.  My husband and I have been married for 10 years and he is a military bomb tech.  Aiden had a rough start right from the beginning.  He was put into the neonatal intensive care unit right after delivery and stayed there for 2 1/2 weeks.  He was 6lbs 12oz and born on 11-30-03.  Once we got Aiden home I sensed something was wrong from the start.  He just wasn't acting like a typical newborn.  The doctors thought it was just from the traumatic birth.  Finally when his nystagmus started at 4-6 months they sent us to specialist.  The doctors didn't tell us a whole lot in the beginning.  Finally after the retinal specialist and neurologist got together they composed a list of 5 possible diseases it could be.  LCA was on the list.  In fact it was the only one that wasn't terminal.  They dismissed it because they felt like Aiden's condition was too advanced for his age.  He already had lesions and a bulls eye maculopathy.  He has pale optic nerves.  After hearing that they thought Aiden was terminally I flew him from Az to Philadelphia to try to get some answers.  Even Dr.  Grant Lui from CHOP told us that he was terminal and had something called Batten's Disease.  We went on believing this for 3 years.  He had several hospital admissions and a feeding tube placed.  During that time we got the Air Force to move us to the East Coast to be with the best doctors and family.  Finally Dr. Eric Pierce  had noticed that Aiden's development had progressed so much and wanted to do more testing.  He was the one who sent out the lab work for LCA.  I few months later Joe and I were asked for a blood sample.  A month after that it was confirmed that Aiden has the RDH12 defect.  We had a huge party to celebrate.  At that time we also tested Caleb who had just been born.  We feared the worse because he had the same issues at birth and was only 5lb6oz.  Fortunately, he was negative for it.  During this Aiden started out in PT, speech, and OT.  He also had a vision teacher come once a month and O&M once he started walking.  When he turned 3 Aiden went into the school system.  The first major battle was getting them to teach Aiden braille. We ended up having to get him evaluated by a doctor of their choosing to prove that his vision was that poor.  Once we did that I received an apology for the trouble they put us through and the delay.  Aiden soaked up braille like a sponge. 
Over the following 2 years we moved several times and received varying services from different places.  Once we got settled in Tucson and Aiden started kinder we demanded he have a one on one aide.  I said it was either that or send him to the school for the blind.  We really lucked out with an AMAZING aide.  He also has a TVI come in for 2 hours everyday.  She has done amazing work with Aiden.  He is currently reading and writing short stories in braille and is in 2nd grade.  Aiden went from being behind to now testing for the gifted program.  I was hesitant at first but after some convincing I agreed.  His self help and life skills are still lacking.  He uses a cane and has O&M once a week. 
Aiden's interests are all things related to rocket shuttles and space.  He loves going to space museums and knows more about space then any adults that I know.  He's also interested in tunnels and bridges.  He always ask how tall/far/wide/long and so on.  His questions never stop.  He's very talkative.  My husband on occasion will bring Aiden out to an abandoned flight line to ride his bike.  I'm always a nervous wreck when they go but he hasn't had any more then minor cuts so far.  Some things Aiden doesn't like are any kind of digital lights like in alarm clocks and trying new foods.  He will be starting feeding therapy next month.  He still has his feeding tube.  He's hasn't had an exam recently, but needs new glasses so I will be scheduling him ASAP.  His acuity in 20/900 and his visual field is down to 5% in one eye and no recordable vision in the other, just some light perception.  If some thing is within his little window he can see it pretty well, but his window is very small. 
 Gabby's experience with LCA has been quite different.  I decided to test in utero for RDH12.  It was a complicated process but it worked out.  I'm glad that we had time to cope before her arrival.  It was hard getting the diagnosis for the second time, but once she got here most negative thoughts went away.  She was born at 5lb 4oz on 5-4-09 with no major issues.   He first retinal exam was at 6 weeks and was completely normal.  Her first year was very typical.  She had some developmental delays, but after raising Aiden around therapists and docs we took a break from all of that and worked on things at home.  Her muscle tone is much better then Aiden's.  At 1 yr. her retinas did start to show minor changes.  I didn't see any visual issues until her 2nd birthday in May.  Her depth perception has been off since then and mobility is becoming more difficult.  Her exam was a month ago and has gone through pretty big changes.  Her retinas have a "salt and pepper" look.  The strange thing is that her eyes don't look anything like Aiden's.  Her optic nerves are also too small.  About a year ago Gabby was diagnosed with seizures and was put on medications.  She's been hospitalized 3 times because of it.  Once that started to happen we plugged back in with the doctors and therapists.
 Currently she is getting OT, speech and feeding therapy.  The TVI was a no show on Gabby's functional visual assessment and I haven't heard from her since.  I'm very interested in what her results will be.  She is very light sensitive and is starting to tilt her head a lot.  Gabby does have tinted glasses that she wears on occasion.  She needs an updated prescription and I am waiting to hear from the Lions Club to see if they will help with that.  She also has a severe astigmatism.  Since she does have quite a bit of usable vision so I think glasses help when she keeps them on.  Overall, Gabby has handled everything very well.  She can be fearful in crowded and new places.  She has a hard time with my husband being away a lot, but as she gets older and can understand more I hope that will get better.  Gabby loves animals and blocks.  She is starting to like baby dolls, too.
 So there you have it.  Another reason we fight so hard.  Gabby is our youngest child with RDH12 in our group right now.  We hope that Abby will never have to learn braille, never have to use a cane, and know how hard her momma and the RDH12 Fund for Sight fought. 

Tuesday, October 25, 2011

Upcoming Finley Event in the PA area

Last year, this Casino trip was a HUGE success!  We filled two buses and made over $2000 for the fund. And all people had to do was pay $25 and have a really fun day at the Rivers Casino.  There are games and prizes on the bus ride down and Nancy Schultz always makes it a really good time (in the form of jello shots).

If you can't make it to Connellsville to ride the bus, you can STILL participate!  My dad is working on you being able to get your voucher, and get $5 worth of 50/50 tickets for your $25 and just meet the people at the casino.  So - if you can make it to the River's casino, but can't make the bus, you can STILL support our fundraiser.

So - if you like going to the Casino every once in awhile, please consider supporting this trip.  All profits go to Finley and the RDH12 Fund for Sight.  Thank you, as always, in helping us reach our goal.

Thank you, Nancy for organizing this fun event again this year!  And it is on light up night in Pittsburgh!  Whoo hoo!  What more can you ask for?

Monday, October 24, 2011

Monday without the mania

Today was the first time in a long time I was glad it was Monday.  There was very little we had to do today, and I took advantage of that.
Today I volunteered in Cainan's class for the first time.  It was fun getting to see him in class and see how he was doing.  Seems to be doing very well from what I could tell.  The kids were sweet and we had a good time.
 After that, I came home to a quiet house with just me and the dog.  I made a batch of pumpkin chocolate chip muffins, and Halloween cupcakes.  The muffins I needed for the Garden Club meeting I have tomorrow morning (my groups turn to provide the food) but the cupcakes were for the kids to enjoy this week.  The muffins I made from scratch, and I make them every year.  So yummy!  I will share the recipe at the end of this post.
Cainan came home at lunch time and we spent the afternoon hanging out and relaxing.  Nothing on the agenda, and I tried not to get antsy and start a project.  I wanted a down day and forced myself to take one.
We played with the dog outside and then around 2 - Cainan went to his room to play.  I went up to check on him and he was asleep.  And warm.  This is the weirdest virus ever.  Yesterday - he was fine.  This morning - fine.  This afternoon - asleep and warm again.  I gave him motrin when he woke up and this evening he was back to himself.  We will see what the morning brings.  It hasn't even turned into a cold.  So weird.
After the rest of the kids and Mat were home, we carved the pumpkins we picked yesterday.  We let the kids design their own, explanation on their looks.  Or what they were going for.  But they had fun.

I think Arlington's MIGHT be a vampire.  Cainan's has three eyes because that is scary.  And Finley just drew what came to mind.  Which was a whole bunch of stuff.

The dog was very curious about the pumpkins and even stuck his head inside Cainan's at one point.

It was difficult carving the pumpkins with him around, but cute as well.

 We roasted the pumpkin seeds.  Well, part of them.  We found a recipe to roast them by first soaking them in apple cider, and then baking them covered in brown sugar and cinnamon.  They are yummy.

And now we are relaxing.  A great end to a great Monday.

Pumpkin Chocolate Chip Muffins:

  • 4 eggs
  • 2 cups sugar
  • 1 (16 ounce) can pumpkin
  • 1 teaspoon vanilla extract
  • 1 1/4 cups vegetable oil (yes, 1 1/4 cups)
  • 3 cups flour
  • 2 teaspoons baking soda
  • 2 teaspoons baking powder
  • 2 teaspoons cinnamon
  • 1 teaspoon salt
  • 12 ounces semi-sweet chocolate chips (Regular or mini, I like mini best)

  1. In large mixing bowl beat eggs, sugar, pumpkin, vanilla and oil until smooth.
  2. Mix dry ingredients together and mix into pumpkin mixture. Fold in chocolate chips.
  3. Fill greased or paper-lined muffin cups 3/4 full.
  4. Bake at 400 F for 16-20 minutes.

Sunday, October 23, 2011

Where did the weekend get to

It is 8pm on Sunday night and I am sitting down on the couch for the first time since Friday night.  This weekend was one I was both looking forward to and dreading all at the same time.  This weekend has been staring me in the face for a few weeks - a build up I knew I would not be able to avoid.
Now - don't get me wrong.  Everything I did this weekend was worth it or fun.  But if I don't have a weekend like this again for a long time, I will not be sad.
It all started at 6am yesterday morning.  We had to be at the yard sale by 7am to set up.  This weekend Mat and I had a table at a local yard sale to sell some of our things and things people had donated to us for the sale.  All the money we raised was going to our non-profit.  But it was an early start to a already very busy day ahead.
We are lucky that we have incredible neighbors.  At 7am, our neighbor Andy came over, loaded his van and went with us to the school to unload.  He stayed until we were completely set up, which was amazing.  We are very lucky he and his wife Lisa are right next door.  The sale started at 8:30 and lasted until 12:30.  In all, we made $315 at our little table, and we thought that was pretty good!  A nice little donation to our fund.  Every little bit helps. Plus - everyone who stopped by got a book mark brailled and information on Finley and our fund.  So, the word was spread.
Cainan and Finley had soccer practice Saturday morning as well.  Again -our wonderful neighbors came by and picked them up at the sale and took them to soccer.  After soccer, Cainan came back and was complaining he was cold.  That boy is never cold.  He felt a little warm, and the sale was coming to an end.  I wrapped him in a blanket and he fell asleep on one of the seats at the sale.  I knew we were in trouble.
By the time we got him home, he was burning up and exhausted.  I gave him medicine and put him to bed.  By this time it is 1:15, and I am supposed to be on my way to Connecticut to meet some of my CT friends for dinner.  (we had made these plans before I signed up for the sale).  Mat was in control of the situation so I headed on my way.
It is a 2 hour drive to where I was going in CT.  I was having dinner with my girlfriends from my old job in Haddam and had been looking forward to it in weeks.  Before meeting them, I stopped by and gave hugs to my little ones (the little girl whose picture I had a few posts ago in the green braille shirt and her brother) and give her mom some braille products she ordered.  It was great to see them.  And they had a great surprise for me.  They had raised a couple $100 at a bake sale (where they and their mom made the baked goods) and wanted to give it to me.  I about cried right there.  My little sweeties.
 I then met my friend Jess and we had time to catch up before we went to dinner with our other friends.  We had a great time - I was so glad to see them all.  I loved being able to catch up. I am lucky this time we only moved a few hours away so that we can still be in contact with each other.
At 9:15, I knew I needed to hit the road if I was going to get home, so I bid them goodbye and headed hom.  By 11:30, I was home and ready for bed.  Now you see why the blog didn't get written yesterday.
Our little puppy is doing well, but he still needs some attention over night.  Last night I had to let him out twice to use the bathroom, and already being exhausted, this was not my favorite.  But he is quick and we weren't up long, and so I didn't mind to much.  Besides - he is extremely cute, so that helps a lot.
By 7am, I was up.  Kids were hungry, dog was hungry, and we still had a busy day ahead.  Finley was supposed to have a playdate, but it was canceled because the little girl was sick.  Mat spent the morning with our neighbor cutting wood for firewood.
 Once the playdate was canceled, we had lunch and loaded up the kids and the dog and headed 45 minutes north to a corn maze and (what we thought) pumpkin patch.  We spent about an hour in the corn maze and the kids had a great time.  (the pictures in this post are from our day today).  Once we realized that the advertisement we read was wrong and there wasn't a pumpkin patch, we headed back home knowing there was one near our home.  We got our three pumpkins and came home.
We walked in the door, Mat headed back out for some groceries, and Finley and I headed to her Daisy troop meet and greet.  Thankfully it was at the house next door, so we didn't have far to go.  Finley had a great time and met some new friends.  We were over until about 5:30, came home for dinner, played a round of candyland, and everyone went to bed.
And that brings me to right now.  On the couch.  Drinking some hope apple cider and watching the dog wrestle with his toys on the floor.  Barely keeping one eye open.  Actually glad that Monday.

PS - Scooby is doing great.  As of Saturday, he was already going right to the door and giving a little whine if he needed to go out and use the bathroom!  We knew the dog was smart, but this was pretty crazy.

PPS - Cainan is much better today.  Had kind of a rough day yesterday, but woke up and wasn't warm and ran around all day.  Kids are so weird.