Tuesday, April 27, 2010


Okay - so don't be mad. I don't have any pictures. And I forgot to post on Sunday and Monday. I have a horrible memory and too many things going on. But meals from last week - good! We found we are not big fans of Halibut. But if you are- that was an easy recipe. And I am not making anything new this week. My mom and I cleaned and freezer and I found a few gems in there I need to cook before buying more food.


I wanted to update everyone on Finley. Monday we received the long anticipated blood results from Carver Lab. For those of you who have long forgotten- in August (yes almost 9 months ago) we had to send Finley's blood work off to find out what type of Lebers Congenital Amaurosis (LCA) she has. Or really, to find out if that is what she has at all. Our doctor was 99% sure this is what it was, but without a "for sure" the blood work was sent off. Plus, there are 14 different known types of LCA. 14 different genes that can cause problems with vision like Finley's. And it was anyone's guess which of the 14 she had. (it gets a little complicated, so I will skip that part).

So, blood work went off. And for the last 9 months, we have waited. And wondered. And waited some more. Monday, the results were in. Finley definitely has LCA. She has the gene labeled RDH12. This does not mean much - this number/letter combo - I know. But it is definitely an answer. LCA affect 3000 people in the United States. It is very, very rare. Out of those 3000 people, around 120 of those people have the RDH12 gene affected. So Finley has about the rarest of the rare.

Of course she does.

LCA and RDH12 is autosomal recessive. What that means is that both Mat and I have to have the "problem" (a gene that is affected) in order to pass this on. Finley had a 25% chance of getting LCA because Mat and I both have a defect on the RDH12 gene. This is like a 1 in a billion chance of happening.

And it did happen. Mat and I both have the defect - and we passed it to Finley, and that is why she has LCA RDH12. That is as simple as I can make it.

We have not found much information on RDH12 because it is so rare. There are not many people out there researching this particular gene. But what we have found is this: 1) it is progressive. How fast it will progress to total blindness is not clear. It could take a year, or 20. A few studies said that most people with RDH12 LCA are completely blind by 18-25 years of age. If we have that long, I would consider ourselves lucky. I am hoping research catches up by then.

2) The sunlight can make it worse. From what we can tell, it seems like sun rays might be damaging her retina further with this particular LCA. So - we have a lot of sunglasses now for her. She has to wear them all the time while she is outside. She doesn't seem to be ligh sensitive inside, but that may come with time.

3) Vitamin A is not processed properly in the eye. This one - I really don't have a lot to say about. We are not sure if an increase in Vitamin A would make a difference or slow things down. That is going to take more time to research.

That is all we know. There is very little else known. It is highly variable, and from what we can tell, Finley seems to be on the better end of the deal. She has pretty good sight right now (for a kid with LCA) and we are hopeful that means she may be in her teens before she goes completely blind.

We have an answer. I actually feel some relief. I have been waiting for so long just for something to work FOR - to know exactly what we are dealing with, that I have forgotten to just breathe. It is now a chapter closed. The waiting for the answer is over. Now we know. And now we can move forward.

Today we had a chance to meet a first grader who has LCA. We were able to meet her braille teacher, her vision teacher, and see her classroom/workroom. She has her own room with a lot of equipment where she learns braille. And then her vision teacher spends the day with her - translating all of her work into braille, and visa versa.

At first - I was overwhelmed. I looked at her, and watched her type away in braille and felt a complete sadness. I saw Finley sitting there. But then- the little girl took the braille paper out of he Brailler, and started to read what she wrote. She read a whole story. I was then AMAZED. A 7 year old - who still has some vision like Finley - who just started braille in Kindergarten, was READING braille. Fluently and with her fingers. I was blown away.

My sadness quickly turned to joy as I watched this little girl in her class. She was energetic, and engaging. She had her desk among other children and her brailer at a desk right next to her. Her vision teacher was off to the side - doing her own thing. She was not "helicoptering" her at all. The little girl was responsible for getting her work done, and the vision teacher was just there to translate her worksheets into braille and then when the little one was done with her work, the vision teacher would translate back into print for the main teacher to read.

I saw a glimpse into our future. And it was okay. Finley is going to still be independent. She will not be hand held. She is going to know how to read Braille by first grade. She is going to have friends, and classmates, and fun. I left there feeling uplifted with a feeling "okay. We can do this. SHE can do this."

Is this what we wanted for her? Of course not. Do we feel guilty that we passed this to her? Of course we do.

But it is what it is (sorry Carrie - I know you hate that saying). And Finley is Finley. Stubborn little firecracker.

We will continue to update you as we find out more. But for now - we have ended one road, and begun another. And we are going to fight! We are going to fight for research. Fight for a cure! But we need your help. We cannot do it alone. We need all of your to help us find a cure for LCA and, of course, LCA RDH12. WE know they are close.

If you want to join us and walk on Finley's behalf, go to the Finley's Fighters Visionwalk page. (go to the top of the blog and click on Finley's Fighters in WHITE and it will take you there). Donate to a wonderful organization that will be responsible for funding the cure that we know is in Finley's future. Your help means everything to our family.

Alone we can do so little; together we can do so much. - Helen Keller.

Saturday, April 24, 2010

Cow Patty Bingo Day!

I cannot believe that I am going to do a post about Cow Patty Bingo. But I am. So deal.

For those of you who don't know what it is, this was a fundraiser this year for Arlington's school. I suggested it last fall, and honestly didn't think the school would go for it.

I was wrong.

We sold raffle tickets. Each ticket was numbered, and each number corresponded to a sqaure on a 1600 square grid.

Here is what our grid looked like when it was all finished and fenced in.

Here it is a little closer.

Then a cow (which came in this gigantic trailer)

is lead onto the field.

And it spends time eating grass.

Lots and lots of grass.

Where ever he "does his business" - the person who had bought that square wins. In this case - they won $5000.

It is a huge money maker for the PTO. And it is a TON of work. But now it is done. It was a pretty fun day.

It took longer than I hoped for our cow to "patty" the ground (chuckle). 2 1/2 hours to be exact. So not a lot of people were left when he finally decided he had eaten enough grass.

But it was exciting none the same.

Here are some facts about our cow. Well, for one- HE was an ox. He is an ox - not a bull - because he doesn't have his "family jewels" any longer. We couldn't have a cow because we were told they are a little more skiddish around people. Ox are used to doing shows, so he didn't care about us at all.

His name was Tom.

He weighed 2800 pounds

He was the biggest ox I have ever seen. He got off that cart, and we all about died about his size. He ended up being very gentle and sweet.

Finley and Arlington got to pet him when he was done, well, you know.

He is 5 years old. Cows that are under 5 years old are called Steeds. No idea why.

We were told he is still a "Baby" and will still grow a bit more. Kind of hard to believe because of the size of him. He was a Brown Swiss. Very gentle, and used to doing shows. So he didn't mind the people at all.

He used the fence to scratch his chin and his horns. It was pretty amusing.

I thought he was very cute.

But - I did have a hamburger for dinner. Sorry Tom the Cow.

A fun day. The kids had a good time watching him eat and eat and eat and eat. We thought he would get sick if he ate the grid. And that if he ate the grid we might be in trouble.

But he just nibbled. The school won't have to cut the grass in a long time.

And here is the proof of the "deed".

Just so you know that we didn't cheat!

We called the winner when it was over.
She was a local woman and very excited. That was the fun part. I didn't get to stay around to watch her claim her prize. She was going to come down and have her picture taken with Tom the Cow and pick up her money.

And to all my "hometown" friends/family who have done this before - no one stuffed cabbage in their bra. It was a good day.


In other news - Arlington lost another tooth! Two front bottom ones are gone and the new teeth already coming in. The top middle are loose now. Won't be long now!

We had a conference with Finley's teacher last week. She is doing very well and is right on track for Kindergarten. However - she needs to work on her "picking up toys" ability and bossiness. Big surprises there. Not. She is making good friends, though, which is good. The teacher also wanted to make sure it was okay to share with the class about Finley's sight. Gail, Finley's vision teacher came in and read a story and talked to the class this past week as well.

Cainan wasn't feeling well this morning. He woke with a bad stomach ache and just wanted to lay around. But, by this evening (and honey nut cheerios, a doughnut, a push up, and pizza later) he was back to his old self. Food cures everything for that boy.

Have a wonderful weekend everyone! I will see you tomorrow for "So How Did It Go Sunday"

Don't forget!!! Sign up for your T-shirts, the BBQ, or donating to Finley's Fighters Vision Walk! You can do all of that from the top of this blog - on the right and left side. We appreciate your support!

Tuesday, April 20, 2010

Stay a Child While You Can Be a Child

Some of you may know that I love musicals. I grew up going to NYC with my family taking in show after show. My cousin Kirsten lives in NYC and has done her fair share of Broadway shows. It is a big part of our life.

That being said - my title! It is from another show. Kudos to my beautiful sister in law, Tricia and my cousin Kirsten for getting the title "What Makes Us Special, Makes Us Strong" right. It was from Shrek. Kirsten - your points are null and void because you were in the show. That is probably, somehow, cheating. :)
So - what show is my title from this time? And it honestly has a point. Too many times I am wishing for my kids to be at the next stage in their lives. Out of diapers. Then out of preschool. Then old enough to be independent. Old enough to get their own milk out of the fridge so I don't have to get up one.more.flippin.time.

I don't give them enough time to just be kids. Too soon they are going to want to be more grown up and want to be away from us, and I am going to be begging them to stay children while they can still be children. They have plenty of time to be grown ups.

Thursday and Friday this week, we let them be strictly kids. No responsibilities, no places we had to be. We went to the zoo and to the children's science center. We had a blast!

Thursday we went to the zoo. It was the first time we have gone to this zoo, and it was really nice. It is a little less than 1 hour away, so not terrible. And it is in Rhode Island. We still find it funny that we can be in three different states in 2 hours or less.

Thursday was really warm. We took our coats, but quickly were able to shed them and enjoy some outdoor weather coat free.

The kids enjoyed going around and seeing the different animals. Cainan mostly just observed, but the girls were really into hunting out the animals that were trying to hide.

We were there for about 4-5 hours. It was a nice day.

Finley's favorite animal was the elephants, of course. It was the first thing she wanted to see.

We ended up seeing the elephants several times during the day, much to her delight.

Arlington's favorite animal was the seals. Mostly because she thought they were funny because they would scoot along the rocks and then roll into the water.

After we finished at the zoo, we rode the carousel that was in the park near by. I didn't take pictures because I had to ride the carousel with the little ones.

Finley does not like to go up and down. She has a hard time with spinning and the world going in many different directions because of her vision. The up and down AND round and round is a little overload for her. So - she always settles for a stationary animal.

Cainan - well he likes it.....sort of. He is frozen solid on the horse, but he doesn't cry. He wants to ride it, but he is nervous about the whole idea.

Friday we went to the science center in Hartford. That isn't a very far drive for us, either, so I am glad we decided to go there. The weather on Friday was cold and rainy, so a good day for an indoor activity.
This science center is huge! I would like to thank my neighbor, Michelle, for recommending it. We spent the whole day there.

The kids had a great time going around to all the exhibits and trying them out.

Arlington and Finley weighed themselves to see how much the weighed in comparison to a bear.

Even all 3 of them together didn't weigh as much as a baby bear.

I would have to say that the water zone was by far a favorite.

We got to see a 3D movie about Dinosaurs, which all three kids enjoyed.

We left around dinner time and headed over the the Cheesecake Factory to finish off our fun day.

We didn't get to go to six flags on Saturday because it ended up being rainy and cold. Bummer. So we spent the day doing things around the house.

Mat and my dad took Arlington bowling in the afternoon.

Then we went to dinner and then Mat and I got to take in a movie. We saw Date Night. It was really good! I recommend it.

Cainan said something funny at school the other day that I wanted to share. His teachers were feeding the kids lunch (it was hamburger day). Cainan raised his hand and asked if he could have "another hamburger, without the ham". It took the teachers a little while to figure out what he meant, but in the end, he didn't want the bread! Too funny.

Today was a completely crazy day. It started with me having to be at an 8am meeting at school.
Then after school Arlington had gymnastics until 4:30.

Then she had to swallow dinner and be at the softball field at 5pm for her first official softball game. Their color is navy blue and they have the cutest hats!! Go coach!

Then I had to drop the babies off at the game at 6:30 because I had to go to a PTO meeting.
Actually - Mat had the hardest day because he was in charge of children all day long. Poor guy.

I am glad today is over. It is 10pm and I just got in from PTO.

Don't forget to sign up for the BBQ or for T-shirts for Finley's Fighters! And if you want to join my team, go to the right hand side of the blog and click on the words "Finley's Fighters" in white and it will take you to our team page. If you want to sign up for the BBQ and shirts, go to the LEFT side of my blog, and click on the link to the website!! Can't wait to see you all there!

Enjoy your week. Remember to let those kids be little for just awhile longer. I am trying to be better at it.

Personal victory for you if you guess what musical my title is from.