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.

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! : )

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".

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

How Many Years in between Children?

My children are almost 5 years apart, Lizzy was born in September 2001 and Frankie in May 2006. That is a bigger span than most of my friends. It seems that the norm is more like 2-3 years in between.
I enjoy watching Lizzy take care of Frankie like a little mother and look out for him. Lately she has been reading to him each morning and he will bring her a book and say, "Lizzy, read". She will entertain him for me while I am making dinner or bring his his favorite toy if he falls down and is crying. I think because of the span in ages, she wants to take care of him.
So I am thankful for the way my children are, the years in between and;
Lizzy teaching Frankie
Frankie asking Lizzy to help him with things

A Vivid Imagination

Where does our depth of imagination come from? What helps it to develop?
When we were at Lizzy's parent/teacher conference the other night, her teacher said she has the most vivid imagination she has ever seen in all her years teaching!! I know she loves to imagine and pretend. From a young age, she could entertain herself with making up stories and acting them out with dolls, stuffed animals, etc. She will sit with 2 dolls and make them talk to each other for a long time. She enjoys making up stories, and playing make believe. She has been into leprechauns lately. It was interesting to listen to her teacher and say to myself, "that's Lizzy". : ) She loves reading and listening to stories we read, maybe that has something to do with it.
I wonder how much of an imagination Frankie will have?

New Shoes

We went spring shoe shopping a few weeks ago for the kids. Yesterday was warm enough for Frankie to wear his new Cars sandals. He was SOOO excited! We took a walk last night and he was sitting in his carriage and he talked about his shoes the whole time; "new shoes", "cars", "piggies out", "light up?", "new shoes", "cars" . . . you get the idea. He was asking if they light up because his sneakers with a firetruck do. He wondered why these didn't, as well.
It was just fun to witness his excitement. Lizzy and I laughed while we walked, listening to how happy he was. Today he was just as excited to put them on again!

It just reminded me of happiness and remembering to be happy with little joys in life. A few joys in my life today;
warm sunshine
Frankie "mowing the lawn"
Listening to Lizzy read to Frankie
Getting appetizers with John
Wearing spring clothes

"Slide"

Frankie and I were early for story time on Friday, so we walked towards the nearby elementary school. We were about a baseball field away from the playground area, and Frankie started yelling, "Slide, slide", very excitedly. I was quite surprised because of how far away we were and I really didn't think he would be able to see the slide from that distance. So now I am debating whether he saw it clearly, not so clearly, or remember the slide was there from another time? I didn't remember being there recently, but he would probably remember better than I. : ) I just found this interesting.
He also points out all the buses. Again, does he see them every time, or maybe hear them? He knows where they are parked, so maybe he just remembers? Or maybe he sees the yellow and associates bus? I guess someday soon I will know, he is starting to talk up a storm!

Things to be Happy About

I thought once in a while, I would write down the things that make me happy and I am thankful for that day! Here are today's:

The warm weather
Walking with Frankie to Starbuck's
Tall nonfat chai tea latte
Talking with friends while the children played outside
Talking on the phone to my mom
Looking forward to our trip to Las Vegas
Sitting on the front porch with Lizzy, talking, laughing and enjoying the sun on our toes
Pancakes for dinner
Bookclub
Talking to John over chips and salsa

"Blueberry Eyes"

When Lizzy had her strabismus surgery, 2 years ago today, we read her a book called "Blueberry Eyes" beforehand. It talked about a girl whose eyes crossed, wore glasses, a patch and eventually had to have eye muscle surgery. Her family calls her "blueberry eyes" because they are as blue as Maine blueberries. The book talked about her family and things she liked to do. I liked the surgery part, because it showed the hospital and the nurses and doctors. It made things seem not too scary. I thought it was a great pre-surgery book because it was real and accurate, probably for kids 3 and over.
When I was looking for the book online tonight, I found another, "The Patch", about a girl who is a ballerina and needs to get a patch, looks cute! Speaking of patching, the Eye Patch Club is a great resource for kids who need to patch. When Lizzy was being patched, we joined the club and got a newsletter, a calendar with stickers to mark off days patched, online resources and games and puzzles for kids. She enjoyed getting the stuff in the mail and putting the stickers on the calendar with Patch the dog.

Weekend!

We had a busy weekend! Lizzy finished up her swimming lessons, complete with jumping into the deep end and swimming to the side, I'm impressed! Today we brought Frankie to church for the first time. We usually go to different masses, so one of us stays home with him. He did pretty well to start, but then got a little louder. So he and John hung out in the "crying room", and then I left with him early. So we will keep trying. We brought a snack, water, coloring and stickers, but I think we need to bring a few more new items next time. : ) I'll be on the lookout, maybe the party store.
We also had an egg hunt today and live animals with our newcomers club. The egg hunt was fun, despite the cold, damp weather. Frankie found his first egg and said "more, pees"(please). : ) Then we went in for the animals. The kids were sitting in a circle, I held Frankie behind the circle and the man held up the first animal. I was pointing to it, but he could not see it! Sometimes I even forget how close he needs to be to see something. So we didn't last long and went upstairs to play with toys instead. He didn't mind, but it just got me thinking ahead again! These same animals will probably come to his elementary school in a few years and he will have trouble seeing them! I'm sure the teacher will do her best to sit him in the front, but it still could be a challenge. Sometimes I find it hard to not know how he will do in school and what will give him difficulties. I'm sure a lot of parents feel this way anyway.

The SHADE Foundation

I came across news of the SHADE Foundation of America last spring/summer. It was started by Shonda Schilling in August 2002, after she successfully battled melanoma. From the website:

"Dedicated to eradicating melanoma through the education of children and the community in the prevention and detection of skin cancer and the promotion of sun safety."

Last summer there was a great program in the Boston area; Skating in the SHADE. Children could skate for a hour or so in late morning/early afternoon, when the sun is at it's most intense. I hope they repeat this activity again!

The website is full of great sun resources and events, as well!

Positive Exposure

I am getting excited because in about 4 weeks, Frankie and I are going to start an albinism group at Perkins School for the Blind. It meets for 6 Wednesday mornings, last year I loved it! The children are cared for downstairs by wonderful teachers and the parents get to meet upstairs; chat, listen to speakers, ask questions, etc.
One of the speakers who came last year was Rick Guidotti of Positive Exposure. He travels around the world photographing people with differences and showing their beauty. He is an advocate for people with so many different genetic conditions, one of which is albinism. He showed us videos from all over the world of people with albinism. It was so interesting and he is just the kindest person, so funny too. : )
I hope Rick comes again to this year's albinism group! He is receiving a humanitarian award in NYC on May 15, 2008. My parents plan to attend, so I will report back.

Jon and Kate Plus 8

Does anyone watch "Jon and Kate Plus 8"?
The Gosselin Family; Jon, Kate, their 7 year old twins and 3 year old sextuplets, have their life chronicled through a weekly TV show. It is funny, poignant, and parents can relate to many of the events that go on!! Since they have 8 children, the last episodes have been devoted to taking each child out individually. They each got to pick somewhere they they wanted to go with mom and dad.
It reminded me of how important it is to spend one on one time with our kids. I do get to spend one on one time with Frankie, since Lizzy is in Kindergarten until 2:00 each day. Spending time with her alone is harder. We now have Friday night game night or TV night, where she stays up an hour later to spend time with me, or me and Dad! She has short Wednesdays every other Wednesday, so we try to have his nap as soon as she gets home, so we can have lunch and play, do crafts together. On the weekends, as well, John or I try to take her out alone at some point.

Deer with Albinism

I got an email today with pictures of twin deer with albinism. So beautiful, like people with albinism! : ) I did a search and found them again on this Texas hunting and fishing site.