That is what I had today. Between all the happenings, it was crazy. I volunteered at the library, weeded for the garden club, went to a consignment sale, picked up a kid from school, went to a volunteer meeting at Cainan's class (with all three kids in tow - so not fun), and went to Arlington's Tennis practice. At least we went for some dinner afterwards. We didn't sit down until 8pm. For the 6 phone calls I missed today - I am SO sorry. I promise I got them.
Braille shirt orders have started to come in! Keep them coming! We are having fun making them - love what everyone is coming up with.
Tomorrow Mat is going to a gene therapy conference at Massachusetts Eye and Ear. Dr. Eric Pierce - a leading Dr. and researcher for LCA will be speaking along with some others. We are anxious to hear what they have to say. I wish we could both go, but alas, I will be staying home with the kids. The littles have soccer in the morning, so I didn't want them to miss that. But we will share with you what we learn.
I spoke with Finley's teacher today. She likes to touch base with all her parents, and today was my turn. She is pleased on how well Finley is doing and they seem to have adjusted. She was bumping her head on some coat racks, so now they covered them with tennis balls and things are all good. Her teacher is fantastic. We are so lucky. She told me that she was PLEASED that she had to speak to Finley for talking when she wasn't supposed to once and when she was being silly with a friend. I know - this sounds weird, but we are pleased too. Did we talk with her about not doing this? Of course. But the teacher saw her come out of her shell with her friends and WANT to be with other kids. And recognize her friends faces well enough that she can be silly with them. It was great. But it was funny to see a teacher be happy about a kid doing something wrong.
Friday, September 30, 2011
Thursday, September 29, 2011
Rainy day randoms
Today it has rained a ton and we have been stuck inside. I know - this is soon to be the theme daily once winter gets here. But it was okay, I got a lot done around the house.
Did you think what you wanted your braille shirt to say? Keep thinking! I am sure you can come up with something good. Remember to go to:
Mat and I bought a canning system. For an upcoming holiday bizarre, we are going to have a Finley's Fighters table. So - we are going to be canning my Grandmother's homemade pasta sauce. If you haven't tasted it - you need to. It is amazing. So - we are going to can it and sell it at the sale. Along with some homemade cookies. We are going to try the canning this weekend. We will taste it in a week or so, and if we don't die - we will make more.
The pictures in this post were taken this morning before school. My mom has been asking for an updated picture of the three kids. This took awhile - lots of whining. I hope she appreciates my pain.
I had to pick the kids up in the car at the bus stop today because of the rain. Cainan NEVER remembers to close the door when he gets out. I mean, never. Today, I was inside before I realized he left it open. "Cainan", I say, "how many times have I told you to close the door." He looked at me, very seriously and said "25 times.. at least". That made me laugh.
Finley decided to draw on her carpet with a crayon. I didn't even realize you could do that. Was it a washable crayon? It was not. It was a cheap restaurant crayon. She spent time in the corner, crying the whole time "I need to get out of here!" It was interesting. She's special.
Tonight we had the local paper come by and do an article on Finley and our cause. Our sweet neighbor had mentioned it to them. They ran a school story about us already, and so it was nice to have an article to explain more about us. We are going to be starting fundraisers in our new area, so they might as well know who is knocking on their door. We talked with the reported for an hour and a half and I think she got plenty of information for her article. Now another town is going to be aware of LCA. So awesome.
Arlington and I have started "girl talk" at night after we finish reading our book together. She is able to ask one girl/woman related question a night, and if I feel she is the right age, I will answer it the best I can. In return, we talk about smoking, drinking, strangers, etc. I can't believe it is really time for these types of talks. I know she has a lot of things on her mind and a lot of questions, so it is important to show her that we aren't afraid to talk about them with her.
Tomorrow is Friday already. The weeks go by so quickly.
https://sites.google.com/site/brailleshirts/
And order your shirt today! They make great Christmas presents.
Wednesday, September 28, 2011
October is Braille Awareness Month
We are gearing up for National Braille awareness month, which is October.
What better way to help us raise Braille awareness than to order some braille products? I have already started making a few items, and would like to continue full speed ahead.
My goal is to make another 200 braille items this year to raise over $2000 for our RDH12 Fund for Sight and for Finley.
I am going to be sending out some order forms, but you can ALSO go to the website I made and print out your own.
At this time, you have to print it out and send it to me. Or you can scan email it to me, if you want to. Or you can just email me the information. My email is on the form. Whatever you like!
Checks need to be sent to me, or given to my parents (if you are near them).
So, check out the website (click on the link below and it will take you there)
Thanks so much for your support. We are creeping our way to the $250,000 goal, so this would really help us. We appreciate it!
Tuesday, September 27, 2011
Pletcher Wildlife Santuary.
No - I am not talking about our children, but their daily dance party in the living room kind of qualifies.
No, I am talking about the outdoors. Our yard which has proven to be a place animals, and insects of all kinds like to gather.
You know - bunnies, skunks, squirrels (in unimaginable amounts - what are they looking for?), chipmunks, woodpeckers, ground bees, regular bees, some weird jumping/flying grasshopper thing, snakes and now.....deer. I knew it wouldn't be long.
This morning, I was startled when I looked out our family room window and there 4 of them were. Standing in the middle of our newly planted grass. I grabbed the kids and the camera and we watched them mosey around our new grass. I didn't see much munching, thank goodness. When I snapped the picture, the biggest deer looked up. They were so close to the house. He was not pleased that we spotted them. Sorry there buddy - you are in our yard.
I have a feeling they were wondering where all the plants went - they had easy access to those bad boys just a few weeks ago. Now....they are sniffing around. Where did they go? Who took our yummies? Move on deer, move on.
When I am working in the yard, nothing surprises me anymore. Not the 500 worms per every inch of dirt, not the spiders who stare at me when I knock there web down. Again. Okay - the snakes....they kind of bother me. The little ones I don't mind, but every once in awhile I get surprised by a nice sized one, and I go running for the house.
But I have all these beautiful flowers..........
And so - I can deal with the wildlife.
In other news, Mat was away on a trip for the last two days, and he came back tonight. It is nice to have him home. Of course, as travel goes with Mat (always always always), his plane left an hour and a half late. So - the kids and I had to trek it to the airport around the time I would be getting them ready for bed. So - that was not that pleasant.
I got Mat a present for our upcoming anniversary, and I picked it up today, so I gave it to him already. I had his license plate changed to RDH12.
He loves it and I am glad. It was fun to surprise him with it tonight.
You know - bunnies, skunks, squirrels (in unimaginable amounts - what are they looking for?), chipmunks, woodpeckers, ground bees, regular bees, some weird jumping/flying grasshopper thing, snakes and now.....deer. I knew it wouldn't be long.
But I have all these beautiful flowers..........
In other news, Mat was away on a trip for the last two days, and he came back tonight. It is nice to have him home. Of course, as travel goes with Mat (always always always), his plane left an hour and a half late. So - the kids and I had to trek it to the airport around the time I would be getting them ready for bed. So - that was not that pleasant.
I got Mat a present for our upcoming anniversary, and I picked it up today, so I gave it to him already. I had his license plate changed to RDH12.
Monday, September 26, 2011
Thinking
Mat and I have been doing some serious thinking about what our next fundraiser is going to be for Finley. We are in a new area, and we have new people to teach about LCA and RDH12. We would like to do at least two big fundraisers a year and have several small ones in between and so, my mind has been reeling on what to do next.
Mat and I are thinking that we would like to try a dinner in the dark. For those of you who are not familiar with this concept - it really is house it sounds. You eat dinner.....in the dark. The reason being, is to show what it would be like if you were blind and trying to have dinner. It is done quite often among the fundraising crowd for retinal degenerations. It is unique, and we thought we would like to try it. I am hoping that it does several things - make a lot of money for the fund (of course), but also bring about more awareness for what it is really like for people who can't see at meal times. The servers will all have night vision goggles, and all the food will be in front of the people before the lights are turned out, but the meal would be in the dark. Does this sounds interesting to you?
I have also decided that our Fund needs a quarterly newsletter. We want to make sure that all the wonderful people who have donated their time, their money, and their prayers to Finley and to the other children in our RDH12 Fund for Sight know that when an event is over, their charity is not forgotten. It will be a great way for all the families to update everyone on how their kids are doing, what is up and coming with the fund, the research, and fundraisers. We are going to put out our first newsletter in early November, so October will be spent getting it all together. So - if you are a friend of ours, on our mailing list, or have donated - expect a newsletter in the near future!
Mat has also been thinking it is time to contact our local reps and senators. We are going to need their help in getting NIH's (National Institue of Health) attention for funding for the last step.(the one AFTER the next step, which we are covering with our RDH12 Fund funds). We need to get NIH's attention that this is something they want to put their money toward. And with NIH getting tighter and tighter with their money, it isn't going to be easy.
Always thinking. Always planning and hopefully it will all pay off in the end.
By the way - an LCA mommy of mine asked me to be a guest blogger and so I wrote a little post for her about Finley. Check out her cool blog here: http://livingwithlca.com/2011/09/guest-blogger-jennifer-pletcher/
Mat and I are thinking that we would like to try a dinner in the dark. For those of you who are not familiar with this concept - it really is house it sounds. You eat dinner.....in the dark. The reason being, is to show what it would be like if you were blind and trying to have dinner. It is done quite often among the fundraising crowd for retinal degenerations. It is unique, and we thought we would like to try it. I am hoping that it does several things - make a lot of money for the fund (of course), but also bring about more awareness for what it is really like for people who can't see at meal times. The servers will all have night vision goggles, and all the food will be in front of the people before the lights are turned out, but the meal would be in the dark. Does this sounds interesting to you?
I have also decided that our Fund needs a quarterly newsletter. We want to make sure that all the wonderful people who have donated their time, their money, and their prayers to Finley and to the other children in our RDH12 Fund for Sight know that when an event is over, their charity is not forgotten. It will be a great way for all the families to update everyone on how their kids are doing, what is up and coming with the fund, the research, and fundraisers. We are going to put out our first newsletter in early November, so October will be spent getting it all together. So - if you are a friend of ours, on our mailing list, or have donated - expect a newsletter in the near future!
Mat has also been thinking it is time to contact our local reps and senators. We are going to need their help in getting NIH's (National Institue of Health) attention for funding for the last step.(the one AFTER the next step, which we are covering with our RDH12 Fund funds). We need to get NIH's attention that this is something they want to put their money toward. And with NIH getting tighter and tighter with their money, it isn't going to be easy.
Always thinking. Always planning and hopefully it will all pay off in the end.
By the way - an LCA mommy of mine asked me to be a guest blogger and so I wrote a little post for her about Finley. Check out her cool blog here: http://livingwithlca.com/2011/09/guest-blogger-jennifer-pletcher/
Sunday, September 25, 2011
A race day and a Birth day
I also have 2 beautiful nieces, but the boys definitely out number the girls.
Welcome to the world, Jet. We have been waiting and waiting for you and we are so glad you are here and you and mommy are both healthy. We can't wait to meet you.
Saturday, September 24, 2011
This and That
Today we had a very busy day. We had to go down to the old house (yes we still own both houses - don't even ask) and set up the dehumidifier again. With all of this rain and muggy weather, we want to make sure the house stays nice and dry.
The kids did great with the trip. Luckily it is only 1 1/2 hours both ways, so not that bad - it goes by quick. We weren't there long, but it was nice to check in on the house. It won't be long and it will no longer be ours. It seems odd to go there now. We are used to our new house and the layout. The old house doesn't really feel like it is ours anymore. It needs a new owner to love it.
After we returned from our little trip to Connecticut, we did yard work all afternoon. We have been spoiled between cooler weather and also rain and yard work has been less painful and just.....less. But today, we had a few things in the (gulp) back yard that we wanted to do, so we trudged forward. We got bit by about 1 million mosquitos, but we got what we wanted to get done. We have found a lot of mint plants and wild flowers in the back yard, so we were finding new homes for them. If you thought the front of the house looked crazy "before" you should see the back.
Tonight we went to a near by farm/grocery/plant place near by that was neat to look at. Finley was whiny, though, which cut our trip short. She was hungry and about to die any moment from starvation, so we got a few things and left. Hoping we can go back soon - it was really neat.
We went to dinner at Chili's and then came home. The kids were exhausted. After baths and reading, Finley fell right to sleep for about the first time ever (she usually likes to look at a few books on her own before she falls asleep).
Tomorrow we are doing a local road race. There is a 1 mile fun run for the kids, and the Kindergarteners get a little special prize if they go. So we are heading there for a few hours tomorrow.
Sorry I don't have any pictures. We did so much running and working today that I didn't bring out the camera. Hopefully I will remember to take it tomorrow and take pictures of the kids "running".
The kids did great with the trip. Luckily it is only 1 1/2 hours both ways, so not that bad - it goes by quick. We weren't there long, but it was nice to check in on the house. It won't be long and it will no longer be ours. It seems odd to go there now. We are used to our new house and the layout. The old house doesn't really feel like it is ours anymore. It needs a new owner to love it.
After we returned from our little trip to Connecticut, we did yard work all afternoon. We have been spoiled between cooler weather and also rain and yard work has been less painful and just.....less. But today, we had a few things in the (gulp) back yard that we wanted to do, so we trudged forward. We got bit by about 1 million mosquitos, but we got what we wanted to get done. We have found a lot of mint plants and wild flowers in the back yard, so we were finding new homes for them. If you thought the front of the house looked crazy "before" you should see the back.
Tonight we went to a near by farm/grocery/plant place near by that was neat to look at. Finley was whiny, though, which cut our trip short. She was hungry and about to die any moment from starvation, so we got a few things and left. Hoping we can go back soon - it was really neat.
We went to dinner at Chili's and then came home. The kids were exhausted. After baths and reading, Finley fell right to sleep for about the first time ever (she usually likes to look at a few books on her own before she falls asleep).
Tomorrow we are doing a local road race. There is a 1 mile fun run for the kids, and the Kindergarteners get a little special prize if they go. So we are heading there for a few hours tomorrow.
Sorry I don't have any pictures. We did so much running and working today that I didn't bring out the camera. Hopefully I will remember to take it tomorrow and take pictures of the kids "running".
Friday, September 23, 2011
Guest Blogger - the Fiore Family
I have decided to have some guest bloggers from time to time. I would like you to get to know more of our RDH12 family and more of our LCA (Lebers Congential Amaurosis) family. We have met so many wonderful people along our journey with Finley that I feel it necessary that their stories be shared as well. I want you to see that - along with Finley - these are the people we are fighting for. We now know 12 children with RDH12 and I am hoping to get the majority of their to come on here as guest bloggers to share their personal stories so that you can see other children like Finley.
Without further ado, I would like you to meet Bella. We met Mike and Maria - her parents - at the 2010 LCA conference in Philadelphia and soon after had a chance to meet Bella. They have done a vast amount of fundraising for our RDH12 Fund for Sight. We are so glad we know them and we have them beside us in our fight to cure our children. Here is their story.
--------------------------------------------------------------------------------------------------
Bella is our oldest child. She is currently 6 years old, and she has a younger sister Ava and a younger brother Anthony who are almost 4 years old and are twins.
We live in Syosset, NY, and most of our family and all of the grandparents are within 30 minutes of us.
When Bella was about 3 years old we started noticing some very peculiar things with her eye sight. For
one, she was VERY cautious about going down steps. Also, she was very cautious about transitioning from one type of floor to another. For example, if she was on the lawn, and she came to the sidewalk, she would take that step with a lot of hesitation. The same thing would occur going from carpet to hard wood. In the spring of 2009, during our Easter egg hunt, she had a difficult time finding the eggs. At this point, knowing that Bella’s mom has some pretty thick glasses and poor eyesight herself, we decided to take Bella to the eye doctor for some glasses.
It was now early summer of 2009, and Bella and her mom went to the pediatric ophthalmologist. Within 60 seconds of him looking into her eyes, he said “Something is very wrong with her retinas. Is there a history of eye disease in your family?” Maria called me at work while still at the Dr. She also called her parents, trying to find out if we have some history of eye disease. There was none, at least none that would apply to what Bella was showing. The Dr gave us some opinions about what she may have (Leber’s, RP, even some sort of infection which was attacking her Retina), and told us to go see a Retina specialist who would be able to help identify this.
At this point, to say that most of our time was spent on the internet googling these diseases and the terrible outcomes would be an understatement. There was definitely some denial, and hoping that the Dr. was mistaken. There was no way we could believe that our daughter was going to go blind. In July of 2009 we saw the Retinal Specialist. He took pictures, spoke to colleagues, and brought numerous others in to look at Bella’s eyes. After the visit he told us “your daughter has a retinal deisease, it is most likely genetic, I think it is Lebers Congenital Amaurosis, but it might not be.” He wanted us to go into Manhattan to Mt. Sinai hospital and meet with someone who would give Bella an ERG. This test would determine if her eyes were converting light into electric basically.
It was now August of 2009. Our summer was not going so well. We still didn’t know what was wrong and what to blame, and all we knew was that Bella’s eyes didn’t work so well, and might get a lot worse. We went to Mt. Sinai hospital and met with another specialist. He performed the ERG on Bella, and the poor thing had contact lenses with electrodes attached to her eyes. Not an easy thing for a parent to witness. But, she was a total rock star. She, thankfully, really enjoys going to doctors. When he was done, he told us “Your daughter has LCA, her ERG is extinguished and she doesn’t have much vision at all. Her vision is good for someone with LCA, but it will probably continue to get worse as the years go by.”
That was it. He said there was no cure, there wasn’t much research being done, and there wasn’t much we could do. We left the hospital, which for those that don’t know is right next to Central Park. We took Bella to the Central park zoo, and proceeded to use about 200 minutes of our cell phone time trying to explain what just happened to our families. We were still very confused.........
After about a month or so, we decided to get Bella genetically tested to confirm if she really had LCA. We were planning on sending her and our blood samples to the University of Iowa. But part of us was still confused by all the different things the doctors were telling us. So, we decided to go directly to the U. of Iowa and see the doctors there who were researching LCA. It was February of 2010, and we left NYC in a blizzard and landed in the midwest in a blizzard. We saw Dr. Ed Stone, and Dr. Arlene Drack at the U of Iowa. They were both working on a project call Project 3000; an attempt to find and identify all of the people in the US with LCA and their different mutations. We were at the hospital for about 8 hours. Bella again was a champ and took it better than us. We left Iowa after giving blood, and we were told, by the experts “We’re about 60% sure Bella has LCA, but we can’t be certain because she is showing some signs of an autoimmune response infection, and we need to rule that out.” Ok, so now we’re headed back to NY, not sure what to tell the grandparents and Bella still doesn’t see very well. So we waited and waited, and in April, Iowa called and said that Bella was negative for the “infection.” But they’re still not sure about what type of LCA she has.
In May of 2010, we were in Disney World, at the Lion King show in Animal Kingdom when our phone rang. It was Dr. Drack, and she told us that Bella has RDH12 LCA. We were relieved to finally have a definite answer. We were now going to try and see what we could do to help our daughter.
The first thing we did was check Ava and Anthony to see if we passed this on to them. Thankfully we did not. At this point we were over the initial shock of knowing that Bella would most likely loose her vision and go blind. That terrible phase lasted about 6 months I think. Now, we were in the pro-active phase and we were going to do everything we could to help Bella.
We started plans for a golf outing fundraiser in the summer of 2010, hoping to raise money for LCA research. Two weeks before the golf outing, we went to the LCA conference in Philadelphia, not sure of what exactly to expect. We met some wonderful people, and learned about some exciting research. By Saturday night, we knew that raising money for LCA was important, but we wanted to make sure a cure for RDH12 was happening at the same time, and we didn’t get that impression from the first day of the conference. By Sunday morning, we met Mat, Jennifer, Bill, Ginny, Louis and Lulu, and the RDH12 Fund for Sight was born!
I can’t describe how relieved we felt driving home from the conference having met other parents going through the same thing as us, and all equally excited and wanting to make a difference about it. We were thrilled to tell our friends/family back home about our plans.
We started a group called Bellas-Buddies (www.bellas-buddies.com), somewhat of an off-shoot of Finley’s Fighters, with the same basic concept. We hold a dinner dance in the spring and a golf outing in the fall. Between the two, we plan on raising $50,000 - $60,000 a year for our Fund.
Bella is in 1st grade now; her eyes have not gotten much worse. She wears transition glasses to protect her from the sunlight. She is night blind, she see’s nothing in the dark, and she has zero peripheral vision. Her right eye is about 20/50 and her left about 20/150. She is considered legally blind. She’s learning braille as well as learning to read and write, and she wants to sing and dance like lady gaga!
She’s a typical little girl, and she’s doing well, but her eyes are a little special....
Mike & Maria Fiore
Without further ado, I would like you to meet Bella. We met Mike and Maria - her parents - at the 2010 LCA conference in Philadelphia and soon after had a chance to meet Bella. They have done a vast amount of fundraising for our RDH12 Fund for Sight. We are so glad we know them and we have them beside us in our fight to cure our children. Here is their story.
--------------------------------------------------------------------------------------------------
Bella and her Special Eyes
We live in Syosset, NY, and most of our family and all of the grandparents are within 30 minutes of us.
one, she was VERY cautious about going down steps. Also, she was very cautious about transitioning from one type of floor to another. For example, if she was on the lawn, and she came to the sidewalk, she would take that step with a lot of hesitation. The same thing would occur going from carpet to hard wood. In the spring of 2009, during our Easter egg hunt, she had a difficult time finding the eggs. At this point, knowing that Bella’s mom has some pretty thick glasses and poor eyesight herself, we decided to take Bella to the eye doctor for some glasses.
I can’t describe how relieved we felt driving home from the conference having met other parents going through the same thing as us, and all equally excited and wanting to make a difference about it. We were thrilled to tell our friends/family back home about our plans.
We started a group called Bellas-Buddies (www.bellas-buddies.com), somewhat of an off-shoot of Finley’s Fighters, with the same basic concept. We hold a dinner dance in the spring and a golf outing in the fall. Between the two, we plan on raising $50,000 - $60,000 a year for our Fund.
Bella is in 1st grade now; her eyes have not gotten much worse. She wears transition glasses to protect her from the sunlight. She is night blind, she see’s nothing in the dark, and she has zero peripheral vision. Her right eye is about 20/50 and her left about 20/150. She is considered legally blind. She’s learning braille as well as learning to read and write, and she wants to sing and dance like lady gaga!
She’s a typical little girl, and she’s doing well, but her eyes are a little special....
Mike & Maria Fiore
Subscribe to:
Posts (Atom)
