Rick Guidotti, of Positive Exposure, received a humanitarian award on Thursday, May 15th, 2008, In NYC. My parents had the pleasure of going last night and meeting Rick for the first time. He is such a wonderful, caring person, who does such good for others. He is an inspiration and a fun person to meet. He is so full of energy! Of course, they were excited to meet him and my mom called me first thing this morning. He remembered meeting Frankie and Lizzy last year at Perkins and has some great pictures he took of them.
My parents met some other wonderful people who had children with albinism, or who had it themselves. My mom has emails from all of them to give to me, so I can chat with them and ask any questions. She expressed how nice everyone was and how welcoming!
I am really excited to see Rick again at Perkins in a few weeks!
Friday, May 16, 2008
Sunday, May 11, 2008
Happy Mother's Day!
Happy Mother's Day to all the wonderful, dedicated mothers I know. I got to have my mom, grandma and aunt up for the weekend for Frankie's party and Mother's Day. It was a great weekend. My mom even dressed up as Curious George for Frankie's party and my dad as the man with the yellow hat!
Things that made me happy this weekend:
Mom (Ghee to the kids)
Frankie's party
Family
John's mom (Nana to the kids)
Nice weather
George Cake
Lizzy's homemade gifts
Thinking about my pedicure
Things that made me happy this weekend:
Mom (Ghee to the kids)
Frankie's party
Family
John's mom (Nana to the kids)
Nice weather
George Cake
Lizzy's homemade gifts
Thinking about my pedicure
Aquarium
Last Sunday, Frankie's birthday, we took him to the New England Aquarium. He and Lizzy had a great time. We got there early and it was not too crowded, he was able to run from tank to tank pointing out the "fishies". He also liked the "jellies". Lizzy had a stuffed frog that she brought home from school for the weekend, so we had fun taking pictures of him at the aquarium. She wrote about his adventures later.
This aquarium has a large 3 story tank in the middle with small exibits on the sides. It has a variety of marine life and a number of talks and feedings. We enjoy the penguins and sea turtles a lot. I recommend getting a pass from the local library which cuts the price down a lot.
I realized that fish in an aquarium are much easier to see than animals at the zoo. So we will have to rethink all our zoo trips as Frankie gets older.
This aquarium has a large 3 story tank in the middle with small exibits on the sides. It has a variety of marine life and a number of talks and feedings. We enjoy the penguins and sea turtles a lot. I recommend getting a pass from the local library which cuts the price down a lot.
I realized that fish in an aquarium are much easier to see than animals at the zoo. So we will have to rethink all our zoo trips as Frankie gets older.
Sunday, May 4, 2008
Happy Birthday Frankie!!
Frankie is 2 today! I can't believe how fast time goes, even quicker with the second child. Lizzy and I were thinking about how we had a picnic the day Frankie was born, before my water broke in her nursery school parking lot. : ) The next day Lizzy got to come to the hospital to meet him. She came to see me in my room and then we all walked down to the nursery to get him. He was in the small crib, and she was so happy to meet him! She was jumping and saying, "Frankie". The next year on Mother's Day she drew a picture of me and her meeting Frankie for the first time. : )
Frankie is such a happy child and easy going. He is a blessing to have in our lives. It is so much fun to hear him talking and he likes to laugh a lot too.
He enjoyed his trip to the aquarium today, dinner at a favorite restaurant and ice cream cake. He got a play grill that makes grilling noises that he loves. And Lizzy got him 2 cars books and musical keys. We also got to all go to church together, this evening. Frankie did so well and was quiet, doing his stickers diligently.
What a fun 2nd birthday! Happy birthday Frankie!
Frankie is such a happy child and easy going. He is a blessing to have in our lives. It is so much fun to hear him talking and he likes to laugh a lot too.
He enjoyed his trip to the aquarium today, dinner at a favorite restaurant and ice cream cake. He got a play grill that makes grilling noises that he loves. And Lizzy got him 2 cars books and musical keys. We also got to all go to church together, this evening. Frankie did so well and was quiet, doing his stickers diligently.
What a fun 2nd birthday! Happy birthday Frankie!
Saturday, May 3, 2008
Walk of FAME
Today's post doesn't focus quite so much on the kids, but on me. We had a busy day today; little league parade, little league practice, a baby shower, birthday party, errands, etc, plus fitting in Frankie's nap and wrapping his presents for his birthday tomorrow! : )
So now I am feeling very tired, worn out, and a little crabby, not to mention my headache. When too much is going on or there is a lot of stress, my body reacts negatively. For a while I thought it was just normal stress, but after Lizzy was born, I started experiencing fatigue every day, pains in my legs and terrible headaches. I was finally, after many months diagnosed with fibromyalgia. The National Fibromyalgia Association describes it: "Fibromyalgia (FM) is a chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances.
I go through good periods and others where it flares up, sometimes for no reason. Today just got me to thinking about it and I also registered to support the NFA's first annual Walk of FAME, being held in CA on May 10, 2008. Today also reminded me that is it OK to take breaks for myself and make sure I get enough exercise, rest, etc.
I am excited about tomorrow, Frankie's birthday and our trip to the aquarium!
So now I am feeling very tired, worn out, and a little crabby, not to mention my headache. When too much is going on or there is a lot of stress, my body reacts negatively. For a while I thought it was just normal stress, but after Lizzy was born, I started experiencing fatigue every day, pains in my legs and terrible headaches. I was finally, after many months diagnosed with fibromyalgia. The National Fibromyalgia Association describes it: "Fibromyalgia (FM) is a chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances.
I go through good periods and others where it flares up, sometimes for no reason. Today just got me to thinking about it and I also registered to support the NFA's first annual Walk of FAME, being held in CA on May 10, 2008. Today also reminded me that is it OK to take breaks for myself and make sure I get enough exercise, rest, etc.
I am excited about tomorrow, Frankie's birthday and our trip to the aquarium!
Thursday, May 1, 2008
Watching "Georgie"
Frankie LOVES Curious George, or, as he says, "Georgie". And he has just started watching him on TV, he says, "Georgie TV".
When Lizzy has watched TV in the past, Frankie was usually not interested at all. He could not see it from the couch and even if he got closer, he was not interested. Lately, making dinner was becoming more of a challenge; he would be crying in the kitchen, under my feet, wanting me to pick him up. So I got to thinking that maybe seeing and hearing George on the TV would do the trick! So about a week ago, I put his chair close to the TV and told him he and Lizzy were going to see "Georgie"! He was excited, yelling "Georgie" and really likes to sit there are watch it. It gives me a half hour to make dinner and relax a bit. : )
I don't want him to become a "chair potato", but it is nice to have a little "mom break". He and Lizzy enjoy talking about George while they are watching too.
When Lizzy has watched TV in the past, Frankie was usually not interested at all. He could not see it from the couch and even if he got closer, he was not interested. Lately, making dinner was becoming more of a challenge; he would be crying in the kitchen, under my feet, wanting me to pick him up. So I got to thinking that maybe seeing and hearing George on the TV would do the trick! So about a week ago, I put his chair close to the TV and told him he and Lizzy were going to see "Georgie"! He was excited, yelling "Georgie" and really likes to sit there are watch it. It gives me a half hour to make dinner and relax a bit. : )
I don't want him to become a "chair potato", but it is nice to have a little "mom break". He and Lizzy enjoy talking about George while they are watching too.
Wednesday, April 30, 2008
Gene Therapy
One of the things that was brought up at the Albinism group today was gene therapy. I had also read an article on it a few days ago.
From http://news.yahoo.com:
"The two teams of scientists, working separately, each tested gene replacement therapy in three patients with a form of a rare hereditary eye disease called Leber's congenital amaurosis. There's no treatment for the disease, which appears early in infancy and causes severe vision loss, especially at night."
Vision was improved with the gene therapy and there may eventually be therapies for other genetic eye conditions. Next week's group is going to be with a geneticist, so maybe there will be more insight on this.
From http://news.yahoo.com:
"The two teams of scientists, working separately, each tested gene replacement therapy in three patients with a form of a rare hereditary eye disease called Leber's congenital amaurosis. There's no treatment for the disease, which appears early in infancy and causes severe vision loss, especially at night."
Vision was improved with the gene therapy and there may eventually be therapies for other genetic eye conditions. Next week's group is going to be with a geneticist, so maybe there will be more insight on this.
Albinism Group!!
Today was the first day of the albinism group that we will go to for the next 7 weeks at Perkins School for the Blind. I am so excited about it. We went last year and loved it!! Today myself, 4 other moms and dads and the facilitator talked and got to know one and other and each others children. It is always nice to meet others in the same situation. Everyone had older children, 2 of the parents had an older child with albinism, which is a nice perspective to have. I am looking forward to the coming weeks and all the great speakers that are coming.
Frankie did pretty well separating. He was upset at first, but his TVI and another lady distracted him with some fun gross motor activities. He then had so much fun he didn't even want to stop for snack! : )
Frankie did pretty well separating. He was upset at first, but his TVI and another lady distracted him with some fun gross motor activities. He then had so much fun he didn't even want to stop for snack! : )
Sunday, April 27, 2008
Bye, Bye, "Ting-Man"
Frankie seems to have given up his pacifier! He will be 2 next Sunday and he has had 2 naps and 2 nights without it. John and I got to go to Las Vegas, for his brother's wedding!, and my parents watched the kids. My mom said the "ting-man" was gone and gave him his Curious George, and he went to sleep!! He has asked for it, but still goes to sleep without it, it is quite exciting.
I know, "ting-man" is a different name for a pacifier. Frankie's godmother and my dear friend is Vietnamese, and pacifier in Vietnamese is "ting-ting". So we have called it that and then I started calling Frankie the ting-man and then he began to call his pacifier "ting-man". It is pretty funny when he says,"I want ting-man.".
So he seems to be growing up by leaps and bounds. This is big to give up "ting-man"! He got his second hair cut today and was so brave and was even smiling. He did really well while we were away and had fun the whole time. We are going to move him into his big boy toddler bed for his birthday, but now I may need to wait, he's growing so fast!
Bye, bye, "ting-man".
I know, "ting-man" is a different name for a pacifier. Frankie's godmother and my dear friend is Vietnamese, and pacifier in Vietnamese is "ting-ting". So we have called it that and then I started calling Frankie the ting-man and then he began to call his pacifier "ting-man". It is pretty funny when he says,"I want ting-man.".
So he seems to be growing up by leaps and bounds. This is big to give up "ting-man"! He got his second hair cut today and was so brave and was even smiling. He did really well while we were away and had fun the whole time. We are going to move him into his big boy toddler bed for his birthday, but now I may need to wait, he's growing so fast!
Bye, bye, "ting-man".
Tuesday, April 22, 2008
Fun Day
Today was our annual trip to Boston for a swan boat ride, seeing tulips, ducklings and lunch! It was a beautiful day and the kids enjoyed the time with their cousins.
Frankie was sunblocked up and did fine. I always get a little nervous at the start of the sun season.
Today I am happy for;
Swan Boats
Boston
Sunblock
Veggie roll ups
Slides
Flip flops
Family
Frankie was sunblocked up and did fine. I always get a little nervous at the start of the sun season.
Today I am happy for;
Swan Boats
Boston
Sunblock
Veggie roll ups
Slides
Flip flops
Family
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