So here they are - enjoy!!
This is what happens to you when you mingle with a skunk and the skunk wins. You get a bad hair cut and a bandage. Dumb dog:
This past Saturday was the pine wood derby for the boy scouts. Cainan was so excited:
Thursday, March 21, 2013
Picture Catch Up
Between working on the races, getting ready for our next bunco, and stuffing 1000's of envelopes, I did actually take some pictures. You're welcome.
So here they are - enjoy!!
This is what happens to you when you mingle with a skunk and the skunk wins. You get a bad hair cut and a bandage. Dumb dog:
Rosebud looks huge next to Scooby now:
On March 14th, Rosebud turned 1 year old. We got her a doggie cake:
Which she threw up later that night because she ate the whole thing all at once:
She got two new toys and Scooby promptly stole one and got it stuck on his head. Yes my life is a circus:
This past Saturday was the pine wood derby for the boy scouts. Cainan was so excited:
His car is the second one from the left:
Yesterday a local artist, Bruce Davidson, who has taken an interest in our cause for Finley came over to paint with her. He heard about her love of art, and brought over a 6 foot canvas and all kinds of art supplies and spent 4 hours painting with her. She was in heaven!!
So here they are - enjoy!!
This is what happens to you when you mingle with a skunk and the skunk wins. You get a bad hair cut and a bandage. Dumb dog:
This past Saturday was the pine wood derby for the boy scouts. Cainan was so excited:
Monday, March 18, 2013
Excitement, Stress, and Being Busy all at once
This week and last week have been extremely busy. Okay, when is it not busy - that would be easier to write about.
The kids have had a lot of appointments, and I am deep in the thick of planning both our June race and our August race for Finley and our foundation.
As the months move along as an alarming pace, I realize that our first Massachusetts race will be here before I know it. It has been so exciting getting daily mail with gift cards and goodies for our basket raffle, money from our sponsors, and just general good will. An article was printed in one of our local newspapers and it has generated phone calls and donations, both very welcome. Our town newspaper will print our article this week and hopefully that will bring in even more race registrations to get this party started.
We are at the beginning stages of our race in Pennsylvania but have already had great response from sponsors and goodies for our basket raffle. I just never am less amazed at the generosity of the people who care for Finley. It makes me smile to write each thank you to all of our generous donors to let them know how truly thankful we are to them.
The stress comes when I realize that running two large events so close together can cause me to lose sleep. Somedays I never leave the computer for the whole 6 hours that the kids are in school and realize I haven't eaten a thing in that time. I am in a zone and trying to get everything entered - not wanting to make one mistake. I keep a notepad by my bed so that I can write notes at 3am when they come to me. Thankfully we have two kitchen tables because our dining room table has been divided into Massachusetts race and Pennsylvania race. I have file folders for each. I have countless spread sheets. I have the constant taste of envelope glue on my tongue. It is an interesting world.
But I enjoy every second. My type A, love for all things office supplies side kicks in high gear and relishes in the set up. But the tired mommy side of me looks at the table and thinks "I need to hire a secretary".
We are also running a "Half Way to Race Day" donation program. I came up with the idea to try this year. Right now we are just running it for our Pennsylvania folks because......it is half way to our August race. I sent everyone a reminder letter about the race, updates on Finley, and a form and envelope if they wanted to donate to our foundation. In the week since I started receiving replies we have received $750 in donations! It is wonderful. We so appreciate the generosity. Hopefully this program will become a yearly thing and a nice way to generate extra funds for our foundation without having to hold an event. As much as I love our events and getting to see everyone face to face - this is eons easier. So we will do this, plus our annual event in each town, and our foundation is going to grow by leaps and bounds!
Today Cainan has his Cleft Clinic appointment. He saw his Cleft palate doctor, the dentist, an Audiologist and a speech therapist. The consensus of the group was to wait until he is around 8-10 years old and do all the work at once - fix his jaw, do his bone graft, and fix his nose. This made me happy because I didn't like the idea of doing them at all different times and keep invading his space. He has already been under sedation 9 times in his short life, and had his lip and nose messed with 5 times, so a break is nice. The speech therapist would like to see him get speech therapy once a week at school, so she is going to make a recommendation.
Tomorrow Finley is having some teeth pulled. She has way too much crowing and adult teeth coming in over top of her baby teeth - she is a mess. She will be under sedation for it because she is young and squirmy. She is not thrilled about it, but she will be home tomorrow with me after the procedure, and we can just snuggle and relax all day.
Friday Finley has her annual retinal specialist appointment. I am looking forward to this appointment for the fact that I think things have changed with her vision and I want to see how much. This appointment, though, tends to last 5-8 hours, so it is not a fun day for anyone. Mat can't go with me this time, so I am there alone with her all that time. Should be interesting. Thankfully we have the Ipad, so she can stay occupied. I will share the results after that appointment.
Tomorrow we are expecting snow. Again. If I ever see that Ground hog, he is a dead man. Spring starts in a few days, and my tulip buds are making their appearance. But it is going to be 18 degrees and we are getting 8 inches of snow. What.the.heck.
The kids have had a lot of appointments, and I am deep in the thick of planning both our June race and our August race for Finley and our foundation.
As the months move along as an alarming pace, I realize that our first Massachusetts race will be here before I know it. It has been so exciting getting daily mail with gift cards and goodies for our basket raffle, money from our sponsors, and just general good will. An article was printed in one of our local newspapers and it has generated phone calls and donations, both very welcome. Our town newspaper will print our article this week and hopefully that will bring in even more race registrations to get this party started.
We are at the beginning stages of our race in Pennsylvania but have already had great response from sponsors and goodies for our basket raffle. I just never am less amazed at the generosity of the people who care for Finley. It makes me smile to write each thank you to all of our generous donors to let them know how truly thankful we are to them.
The stress comes when I realize that running two large events so close together can cause me to lose sleep. Somedays I never leave the computer for the whole 6 hours that the kids are in school and realize I haven't eaten a thing in that time. I am in a zone and trying to get everything entered - not wanting to make one mistake. I keep a notepad by my bed so that I can write notes at 3am when they come to me. Thankfully we have two kitchen tables because our dining room table has been divided into Massachusetts race and Pennsylvania race. I have file folders for each. I have countless spread sheets. I have the constant taste of envelope glue on my tongue. It is an interesting world.
But I enjoy every second. My type A, love for all things office supplies side kicks in high gear and relishes in the set up. But the tired mommy side of me looks at the table and thinks "I need to hire a secretary".
We are also running a "Half Way to Race Day" donation program. I came up with the idea to try this year. Right now we are just running it for our Pennsylvania folks because......it is half way to our August race. I sent everyone a reminder letter about the race, updates on Finley, and a form and envelope if they wanted to donate to our foundation. In the week since I started receiving replies we have received $750 in donations! It is wonderful. We so appreciate the generosity. Hopefully this program will become a yearly thing and a nice way to generate extra funds for our foundation without having to hold an event. As much as I love our events and getting to see everyone face to face - this is eons easier. So we will do this, plus our annual event in each town, and our foundation is going to grow by leaps and bounds!
Today Cainan has his Cleft Clinic appointment. He saw his Cleft palate doctor, the dentist, an Audiologist and a speech therapist. The consensus of the group was to wait until he is around 8-10 years old and do all the work at once - fix his jaw, do his bone graft, and fix his nose. This made me happy because I didn't like the idea of doing them at all different times and keep invading his space. He has already been under sedation 9 times in his short life, and had his lip and nose messed with 5 times, so a break is nice. The speech therapist would like to see him get speech therapy once a week at school, so she is going to make a recommendation.
Tomorrow Finley is having some teeth pulled. She has way too much crowing and adult teeth coming in over top of her baby teeth - she is a mess. She will be under sedation for it because she is young and squirmy. She is not thrilled about it, but she will be home tomorrow with me after the procedure, and we can just snuggle and relax all day.
Friday Finley has her annual retinal specialist appointment. I am looking forward to this appointment for the fact that I think things have changed with her vision and I want to see how much. This appointment, though, tends to last 5-8 hours, so it is not a fun day for anyone. Mat can't go with me this time, so I am there alone with her all that time. Should be interesting. Thankfully we have the Ipad, so she can stay occupied. I will share the results after that appointment.
Tomorrow we are expecting snow. Again. If I ever see that Ground hog, he is a dead man. Spring starts in a few days, and my tulip buds are making their appearance. But it is going to be 18 degrees and we are getting 8 inches of snow. What.the.heck.
Thursday, March 14, 2013
A Great Experience
Last Friday Mat and I were invited to a HBO Documentary film premiere. Mat's lab has done some work on Progeria (read about that HERE) and so we got to go. It was a really unique experience and I am so glad we got to go.
The film was in Boston because the family lives in Massachusetts. The theater was REALLY cool.
.jpg)
The film was about Sam.
The family that was part of this documentary runs the Progeria Research Foundation which has raised millions of dollars for clinical trials to help cure progeria. Right now they have found some medications that help control the symptoms which will hopefully prolong these kid's lives.
Kids with Progeria live an average of 13 years. Some more, some less. The boy that the film was about - Sam - just turned 16 years old. He has outlived his life expectancy by 3 years.
.jpg)
Sam was the most well spoken kid I have ever met. It was great to listen to him and watch his life story on film.
His mom said a lot of things that Mat and I say when it comes to Finley. She saw a problem and she is working to solve it. She races the clock to save Sam's life and the lives of all the kids with Progeria. Listening to her solidified for us that we are doing the right thing for Finley and kids like her.
Parents will change the world of science. They have been for many years, and we are getting stronger. There is nothing like the will of a mother to save her child to get science to move forward. We will never stop.
Sam's mom is determined to save him. She has devoted her life to saving his. And so far, she is winning!!
Sam's movie - "Life According to Sam" will premiere on HBO this fall and then will be out on DVD in the spring. You should try to catch it. It was amazing.
The film was in Boston because the family lives in Massachusetts. The theater was REALLY cool.
.jpg)
The film was about Sam.
Kids with Progeria live an average of 13 years. Some more, some less. The boy that the film was about - Sam - just turned 16 years old. He has outlived his life expectancy by 3 years.
.jpg)
His mom said a lot of things that Mat and I say when it comes to Finley. She saw a problem and she is working to solve it. She races the clock to save Sam's life and the lives of all the kids with Progeria. Listening to her solidified for us that we are doing the right thing for Finley and kids like her.
Parents will change the world of science. They have been for many years, and we are getting stronger. There is nothing like the will of a mother to save her child to get science to move forward. We will never stop.
Sam's mom is determined to save him. She has devoted her life to saving his. And so far, she is winning!!
Sam's movie - "Life According to Sam" will premiere on HBO this fall and then will be out on DVD in the spring. You should try to catch it. It was amazing.
Monday, March 11, 2013
RDH12 Dinner Dance
This past weekend we had the honor to go the the Fiore family's dinner dance for their daughter, Bella, and our RDH12 Fund for Sight.
Like Finley, Bella has RDH12 LCA. We met their family at the LCA conference in Philadelphia in 2010, and we are so glad we did. They are an amazing family who have grown our foundation by leaps and bounds. We would be no where near our cure if it wasn't for them. They have two amazing events a year - the Dinner Dance in the spring, and a golf outing in the fall.
The Dinner Dance is so fun because we get to dress up, and dance, and have a great time. This year we were able to bring the kids. It was nice for the donors to be able to meet Bella and Finley and see how well the girls are doing, and for us to express how grateful we are for all of their support.
Bella's Buddies raised $20,000 Saturday night for our foundation. How amazing is that news?
I took some pictures of the night, and the Fiore's sent me a few - so here they are. Enjoy!
Finley and Bella at the beginning of the night:
Maria and I with our RDH12 girls:
Bella and Finley doing some crafts at our table:
Anthony (Bella's brother) and Cainan playing the ipad. Cainan was so happy to see another boy:
Ava (Bella's little sister - she and Anthony are twins) coloring at our table:
My favorite picture of Finley and Bella:
They were goofy all weekend:
Ava and Finley:
The Fiore's getting ready to start the night:
The girls were thinking of dancing:
Finley and Arlington start tearing up the dance floor:
Cainan did was he did best - stay in one spot all night:
The Fiore family and our family:
Finley and Arlington dancing:
Mike and Ava:
The girls did this most of the night:
They held hands all night. By the end of the night they said their feet hurt from dancing so much:
I won a raffle prize1 I never win anything! I won a REAL Kate Spade bag.
I love it so much:
These were the centerpiece of the tables. Arlington won one - she was excited:
Like Finley, Bella has RDH12 LCA. We met their family at the LCA conference in Philadelphia in 2010, and we are so glad we did. They are an amazing family who have grown our foundation by leaps and bounds. We would be no where near our cure if it wasn't for them. They have two amazing events a year - the Dinner Dance in the spring, and a golf outing in the fall.
The Dinner Dance is so fun because we get to dress up, and dance, and have a great time. This year we were able to bring the kids. It was nice for the donors to be able to meet Bella and Finley and see how well the girls are doing, and for us to express how grateful we are for all of their support.
Bella's Buddies raised $20,000 Saturday night for our foundation. How amazing is that news?
I took some pictures of the night, and the Fiore's sent me a few - so here they are. Enjoy!
Finley and Bella at the beginning of the night:
Monday, March 4, 2013
Arlington's "Sleep" over
This past weekend was Arlington's sleep over birthday party. She hadn't had a party for her friends, and since her birthday hits our February school break each year, we had to move her party into March.
She was so excited. She had 6 of her little friends here started at 4pm on Saturday. The did some craft projects we set up for them, had pizza for dinner, sang and ate cake, and then retired to the playroom which we set up all their sleeping bags. We have a TV/DVD player, cable up there, and it is at the opposite end of the house from all the bedrooms, so they wouldn't disturb Finley and Cainan.
It was a good plan because in the end they tried to stay up all night. I slept in our family room in case they came down from the playroom and needed something. I got as much sleep as they did. I heard the last sound at 3am. Who thought 10 year olds had that much stamina?
In the morning they were all up by 7:30 am. That was crazy. I have not gone on 4 hours of sleep in a very long time, and even then I couldn't handle it. I felt like I was in a haze. But they were up, chipper, and ready for breakfast. Mat made them cinnamon waffles, and they played until their parents came for them at noon.
By mid afternoon, Arlington was melting down and by bedtime she was a mess. She was so over tired that she was sobbing, and once she fell asleep, she slept like a rock. This morning she woke up and was back to her normal self, but fell asleep early tonight. It is going to take us both a few days to right ourselves.
I am glad she had a great party. The girls were great, and I heard lots of laughing and giggling. But if Finley asks for a sleepover when she is 10, I am making sure it is a weekend the grandparents are in town.
Enjoy the pictures
Wait until you see her cake! Our good friend, Courtney Hamilton, makes these amazing cakes. Arlington wanted an Ipod. So Courtney made her one. Each app is a piece of fondant that she decorated and then placed on the cake. They are all things related to Arlington - softball, tennis, dogs, monster high, scooby doo, her age, her birthday - really, really clever. It was so pretty I didn't want to cut it.
Arlington wanted Monster High for her decorations. Here is our dining room before the guest arrived.
The goody bags for her guest, and the table where we put the cake:
The party guest having dinner:
Opening presents:
Singing happy Birthday:
She was so excited. She had 6 of her little friends here started at 4pm on Saturday. The did some craft projects we set up for them, had pizza for dinner, sang and ate cake, and then retired to the playroom which we set up all their sleeping bags. We have a TV/DVD player, cable up there, and it is at the opposite end of the house from all the bedrooms, so they wouldn't disturb Finley and Cainan.
It was a good plan because in the end they tried to stay up all night. I slept in our family room in case they came down from the playroom and needed something. I got as much sleep as they did. I heard the last sound at 3am. Who thought 10 year olds had that much stamina?
In the morning they were all up by 7:30 am. That was crazy. I have not gone on 4 hours of sleep in a very long time, and even then I couldn't handle it. I felt like I was in a haze. But they were up, chipper, and ready for breakfast. Mat made them cinnamon waffles, and they played until their parents came for them at noon.
By mid afternoon, Arlington was melting down and by bedtime she was a mess. She was so over tired that she was sobbing, and once she fell asleep, she slept like a rock. This morning she woke up and was back to her normal self, but fell asleep early tonight. It is going to take us both a few days to right ourselves.
I am glad she had a great party. The girls were great, and I heard lots of laughing and giggling. But if Finley asks for a sleepover when she is 10, I am making sure it is a weekend the grandparents are in town.
Enjoy the pictures
Wait until you see her cake! Our good friend, Courtney Hamilton, makes these amazing cakes. Arlington wanted an Ipod. So Courtney made her one. Each app is a piece of fondant that she decorated and then placed on the cake. They are all things related to Arlington - softball, tennis, dogs, monster high, scooby doo, her age, her birthday - really, really clever. It was so pretty I didn't want to cut it.
Subscribe to:
Posts (Atom)
