Albinism on 20/20

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20/20 Special: Overcoming Social Stigma of Albinism, Friday, October 2nd at 10pm

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Frankie goes to School!

Frankis is in his second week of preschool already!! He loves it and asks every day if he is going today. On his first day, he said he wanted to go back as soon as it was done. I am so glad he likes it!
I met his new TVI last week too, she seems very nice and was there again today.
We got to visit the classroom twice before he started, once with just his teacher and O and M specialist. He went another day when the kids where there for a hour, so that was great to get adjusted. John and I both stayed on his first day for about 1/2 hour.
This week they are talking about bugs. He came home with a bug stamped picture, talking about lady bugs! So it has been a great experience for him so far, and he talks about the other kids too.
Today the sun awning was also up over some of the equipment, so that will help him with the sun.
I am so glad he likes it so much!!

Grandma, I Miss You

I was able to make it down to the wake and funeral for my Grandma. It was comforting to be with family and see so many relatives and friends who came. Of course it was comforting to be with my mom.
My grandma still looked so beautiful, she was wearing the pink dress she wore to my wedding, surrounded by pink flowers. The service for her was so beautiful too. My mom and I each did a Bible reading. A lady my mom knows sang, "It is Well with My Soul" and "I Can Only Imagine". I spoke a few words about my grandma too, just spur of the moment. I talked about how she was a rare person who was always kind and gentle. She was always having fun with us; camp outs, parties, etc. We were always laughing. My mom gave a wonderful tribute, a letter to her mom. She had read it to Grandma a few years ago and Grandma had said it was the nicest thing anyone had even said about her. The service closed with some kind words by the pastor.
I just wanted to write down a few of these memories so I can keep them close. It was cold and rainy at the cemetery, but as soon as the pastor started to speak, the church bells rang out! We then went out to eat and reminisced about stories of Grandma and Pa, pretty much all funny!
I really miss her a lot. I feel sad almost every night and cry. She was a wonderful person!

Happy 3rd Birthday, Frankie!! May 4, 2009

Frankie is 3!! He turned 3 on Monday, so the 4 of us celebrated Sunday night before I left for NJ. Yesterday we had his party with family and friends in our backyard. The rain held off and everyone had fun! We played stick the hubcap on Lightning McQueen, a cars scavenger hunt, had pizza snacks and cake! Frankie's EI teachers were even able to come!! Yeah!
So my big boy is 3!!!

Grandma

My Grandma passed away today, my mom's mom. It is such a shock, she was sitting on the bed talking to Pa and she fell off the bed and died. She had a massive heart attack.
I was very close to her and Pa. We were always at their house and have such fun memories. Every year on labor day weekend we would camp out in their backyard, have a BBQ, lots of candy and snacks, games, cards, and fun! The first year they both dressed up as ghosts to scare us. I was really scared at first, but then did realize it was them.
We were always doing something funny together too. When she got her video camera, we would make up plays, sing funny songs and have lawn chair precision team skits. She always had fun toys and candy and goodies. She would say, "Save room for dessert!" She stills has fun buying things for her 4 great grand children.
We got to see her and go out to lunch 2 weeks ago. I am so glad. She gave Frankie his birthday gifts and a coloring book and crayons for Lizzy. I am glad Lizzy is old enough to remember her.
I miss you already, Grandma. I love you so much!

Life

Wow, it's been along time since I have posted, so much going on!! I have a lot of updates on TVI's, school, etc, I will write about soon.
Lizzy, Frankie and I headed down to NJ to visit my parents over spring break a few weeks ago. We got some bad news, my aunt was diagnosed with a stage 4 cancerous brain tumor. I have really been in shock the past 2 weeks and cannot even believe it. She was fine one day, and this news the next. It saddens me that she has this and it is so progressed. It is also sad for my family, she is my dad's younger sister. She will start chemo and radiation next week, we keep praying for her!
While she was having a biopsy last week, she said she could feel her dad (my grandpa) watching over her. He died year ago Valentine's Day.
That reminded me of what happened just before Frankie's surgery, and I have thought of ever since and wanted to share. Of course before his surgery, i I was quite nervous and upset. I went to mass by myself the Sunday before. I felt kind of a mess, and then 2 people sat down behind me and I smelled cologne and I immediately thought of him, it was the cologne he wore, and I was transported in my mind to their old house, in my dad's old room. It was a small room, just like Frankie's room. Then I was in my grandparents bedroom, and I knew that my grandpa was looking out for Frankie!
It helped me get through the next few weeks of the surgery and recovery.
I am praying every day for my aunt and trying to make the most of each day that I spend with my family. Life it good, but is is also short and sometimes difficult. Happy times should be cherished. You really never know what the future holds. So I am going to try every day to think of things that happened that made me smile, happy and write them down.
Frankie was sick today, but I can still think of a few:
Lizzy got to go to her little league parade, softball game and friend's house
Frankie had a yummy popsicle and jello
We all watched part of the Sound of Music together
It was a nice day and I got to take a walk.

Happy Easter!!

We had a fun weekend! Yesterday we went to the Stone Zoo for the Bunny Bonanza! The kids got their pic with the bunny, planted seeds, did crafts and played games! We got to see some animals too, including the new back bears. It was cold, though, so we had lunch in the car!
This morning we started with an early morning egg hunt and opening Easter baskets, then went to church. Then the family came over for brunch and more egg hunting! Playground later in the day!

Circus of the Senses

Frankie and I went to the Big Apple Circus, "Circus of the Senses" today, in Boston! We went with friends, the little girl has albinism, and met another family with a girl with albinism too!
The show itself was great, we were in the 2nd row, but I still don't think Frankie could see too well, he was more interested in climbing in and out of his chair! : ) There were clown acts, great trapeze and balance acts, dancing, dogs, etc!
Afterwards, we got to go up in the ring for the touch session! That was so great!
Frankie got to touch the dog and pony, swing on a rope trapeze, touch the
costumes, use the juggling pins, talk to the clowns! It was so much fun to meet the performers and see everything up close! He actually could see the people and animals and had fun talking to them!
We can't wait to go again next year!!

IEP Meeting!!!!!

Yea, Frankie got into the integrated preschool in our town and we are happy with his IEP!! I am very excited and relieved.
He will receive an hour a week of vision services and 45 minutes a week of O and M. The specialists will also have time to consult with the teachers. His teacher seems so nice. We are going to go into the school in a few weeks with the O and M specialist, so he can get used to things.
We finally got the vision report late last night, so I think the director at the preschool is going to look into getting a new person. It doesn't seem like she can take this on, at this time.
Frankie will start school right on his birthday, May 4th. He will be in the afternoons for the remainder of the school year. A little tricky with naps, but we shall see. We will start with 4 afternoons, and can always go down to 2. Over the summer we decided not to do the summer program, so he will receive his services at our house. In the fall he will be going 4 mornings, which will be great!
I am very happy with how things turned out and feel like another weight has been lifted!

Doing Better!!!

Frankie is doing much better from his surgery!! It took him, and me, about 2 weeks to feel back to normal. He is playing all the time now, happy and going outside. The sun is not bothering him with his sunglasses on! It is nice to have our Frankie back!! And we are done with the eye drops! : )

IEP Meeting Tomorrow!!!

I am a little nervous, yet excited too, because I think Frankie will get the services he deserves!!

Genetics

We took Frankie to his geneticist last week. We had been there 2 years ago and he
had one mutation on the OCA 1 gene, so he said he probably had that, but not
100% sure.
Today he told us that he does not have OCA 2, that was ruled out through genetic testing. He are going to test for 3 and 4 and revisit 1. I guess it is odd that only 1 mutation was found.
I just want to rule out HPS, Hermansky Pudlack Syndrome, characterized by bleeding tendencies and lung problems. He said the genetic testing for that was not too
accurate, only 10 % correct. But they can do a blood platelet test, but he
wasn't sure who even did that test.
I have found out from my kind online friends that there is a doctor in MN that will test the blood through electron microscopy. So when I get the results of OCA 3 and 4, I am going to ask for the HPS test, as well.
Frankie will have to have another blood draw, not looking forward to that after all the trauma from surgery! So we will wait a month or so. Poor little guy is so afraid of things now, I think he thinks everything is going to hurt him, like the surgery did! : (

Certificate of Blindness

Today, after I met with the lady from the MA Comm for the Blind, I received mail for Frankie. It was a certificate of blindness for him. : ( It struck me as sad. I have known since he was a baby that he would not see real well and probably wind up legally blind, but a paper that says you are blind is still a little shocking. So it's still sinking in a bit. I am waiting for something happier to happen!

Happy St. Patty's Day!

The kids are wearing green. We made green cookies yesterday to have today after our reuben's.
Today was Frankie's first day back to his EI class. He did pretty well, but he missed me a bit too.
His O and M specialist came again today to see him before the IEP meeting next Wednesday! Yikes, it's almost here!
A lady from the MA Comm for the Blind also came to observe him and talk to me. She will come to the meeting, as well, to advocate for services for Frankie, she seemed pretty positive about it.

My own IEP letter, what I want for Frankie

Frankie was born in May of 2006, greeted by myself, my husband and big sister Lizzy. It was not until he was about 4 months old that I started to notice his poor vision. I realized he could not track objects. A stuffed animal fell towards his face and he did not even blink. We took him to the eye doctor, and a diagnosis of ocular cutaneous albinism was given. I watched as he did not respond to any flashlights or objects. We were told he knew us by our voices, not our faces.

Frankie will turn three on May 4. There are a few reasons why I feel he would benefit from an IEP and services in the Westwood Integrated Preschool. He recently was diagnosed as being legally blind. He gets around so well in familiar places, is it sometimes easy to forget his vision impairment. He also is cognitively proficient, in things that do not require vision to learn. An example; he knows how to count to 12, sing many songs and has been potty trained since 2.7, yet he does not know his colors well, has trouble with busy puzzles and cannot always identify the food on his plate.

My first concern is the classroom setup and teaching methods. He will not be able to see a book or item that a teacher is holding up in front of the classroom. He will listen, not seeing what is going on, for just so long, then he loses interest and fidgets, gets up, etc. He will need a lot of adaptations so that he can get the most out of these types of lessons and circle time in the class. The classroom also needs to be set up the same way, so that he gets used to it, with his seat facing away from the window.

He does not see a great deal of what is happening in the classroom. If he drops something on the floor, he has a really hard time locating and finding it. Things with similar colors blend together and he has a harder time picking something out. He would not easily be able to recognize someone or something across the room. At early intervention class the other week, I told him there were bowling pins, but he could not see them across the room, and was asking where they were. I feel that a Teacher of the Visually Impaired would be beneficial to Frankie in the classroom, as well as the teachers.

He also needs extra help learning things at a close range. He has trouble pointing out animals and objects in books. For many animals, he will say it’s a sheep. He gets very close to a picture, to see it.

An orientation and mobility specialist would also benefit Frankie. He trips over toys, small obstacles or door jams in his way. In new surroundings, Frankie may trip and be hesitant to explore. He has trouble with stairs, and he can be very slow and cautious. At a familiar playground, he has trouble finding other pieces of equipment, if they are far away. On apparatus at unfamiliar playgrounds, he will sometimes stop and put his hand down, and shuffle very slowly.

My last concern is the sun sensitivity that goes along with albinism. He needs sunglasses and a hat while outside and should not be in the sun for long periods of time. Any extra shade on the playground would be beneficial to Frankie, as the sun makes it harder for him to see.

As there are special education teachers already at the Integrated Preschool, it seems like a great place for Frankie to get the services he needs. I have 2 other examples of how hard things can be for him with his vision limitations. He didn't know his EI teacher (whom he has known for 2 1/2 years) when she had a hoarse voice. He kept asking me if that was really her! He was with my parents and my mother took him to our bathroom, and he was asking her if they were in our bathroom or theirs. He could not distinguish where he was.

Recovery

Last weekend was a hard recovery for Frankie. He woke up Saturday morning throwing up, but there was nothing in his stomach to throw up except some saliva. He did start eating slowly and drinking, so that seemed to help. He was still in a lot of pain over the weekend. When he finally walked a bit he was very wobbly and off balance. It did go away, I think due to him getting used to his "new" eyes.
We used a lot of Tyenol, and the eye ointment/drops have been hard! We went for his follow up appointment on Wednesday and the doctor said his eyes are healing nicely!!! The appointment was hard, Frankie was very afraid! But it is done, we do not need to go back until May!
It was a hard recovery for Frankie and for me to! To see your child in pain is one of the hardest things! I was shaking from it for days. I still feel sad, off, not quite happy. But we had a nice night out to dinner tonight.
He has been extremely light sensitive from the surgery too! We had blankets on the windows and the lights dimmed for a while. Today he was outside for a few minutes and didn't say his eyes hurt. So we are getting there!

Surgery - March 6th

Frankie had his surgery last Friday, March 6th. I was nervous, but then felt calmer as we were there! It got postponed from 8:30, to 10, 10:30 and finally 12! A long time for a small child to not eat! He did well waiting, we watched some TV, read books.
Then I suited up in the mask, surgical suit, hat. We dressed Curious George up too and then Frankie did! He was excited about it and liked the mask. We told him he was going to go into another room and smell strawberries, and he was excited! We got in there and laid him down and he was upset, crying though the mask, it sounded so odd! He went out pretty quick.
He was in surgery a good hour and a half, he had 6 muscles worked on. 2 to help his strabismus (crossed eyes) 2 to help his nystagmus (wiggly eyes) and the other 2 to help his null point/head tilt.
In recovery I was surprised that there was blood coming out of his eyes, so sad. He woke up and wanted me and I sat with him for a few hours before we went home. At one point he got the IV out and blood was spurting everywhere!
We got home in the later afternoon, my parents and Lizzy were surprised to see how bad his eyes looked. He just laid on me and slept or cried out in pain that his eyes were hurting, so sad!!!! He had a hard time sleeping, I wound up sleeping on his floor on the couch cushions!
He was in enough pain that I do not think I would do it again.

Pre-Surgery

I am finally able to catch up writing about Frankie's surgery, he had it a week ago! We stayed in most of the week before, so he wouldn't get a cold. So that was a long week. My parents came up the day before, that was so great and helpful.
I was sooo nervous leading up to surgery! And poor Frankie didn't even know it was coming!

This week's Evaluations

Frankie was quite busy this week!
On Wednesday we went to the integrated preschool again and he had 2 evaluations. First was physical therapy. He had trouble with throwing, catching, aiming, stairs. I talked to the teacher about his being much more cautious in unfamiliar environments, and my concerns with him on the playground. It seemed that she would recommend him for services with her.
He also had his educational evaluation, and did well on that; counted to 12, knew shapes, etc. I got to talk to the special education teacher in the classroom and she was very nice. So I felt more positive about the process after I left.
Thursday an orientation and mobility specialist from the Carroll Center came to the house while his EI teacher was here. So she observed him a bit and we got to talk. She will recommend services for him as well, especially on the playground. She will also come to see him in his EI class in a few weeks.

Bowl-a-thon 2009!

We hosted our 2nd NOAH bowl-a-thon yesterday, to raise money for NOAH and people with albinism. We had about 60 people bowling with us. There were 5 people with albinism, 2 adults, 2 children (one being Frankie) and a baby. Everyone had fun bowling, the little kids just kept rolling many, many bowls down their alley. : )
Then we headed to Papa Gino's for pizza, cupcakes, cookies and M & M's, yum!
It is still amazing to me that we know so many people with albinism now! One of the families we met for the first time, their little 9 month old boy has albinism. It winds up we go to the same doctor. We are going to get together again soon so I can give the Frankie's outgrown sun protective clothing.
It was a great day, can't wait till next year!

Relying on Hearing

Today Frankie's EI teacher came and she had a hoarse voice from a cold. I told him she was coming and she came in and said hi. She was talking to me for a minute and and he kept asking me, "Is that Ms. R"? He wasn't sure because her voice sounded different and I guess he really does not see faces that clearly. We do not realize how much he relies on his hearing and tells people by their voices. It was just surprising to me.
I am still thinking about his legally blind status too. I got something from the MA Commission for the Blind in the mail today because he is registered as a legally blind person in MA. I have not had a chance to read it, but I am still getting used to it and it is still sinking in, I think.

Walden Pond

On Sunday we went hiking at Walden Pond. What a nice relaxing place to be. The pond was frozen, some people were skating on it. We did a kids' guided hike and walked about a half mile to the site where Thoreau's house stood. Frankie did good for that part and Lizzy loved the whole thing! Then we hiked back on another trail for a 1/2 mile, but it was a bit more snowy/slippery, a little harder for Frankie. It was still a fun activity, the lake was beautiful and the kids enjoyed going in the replica of Thoreau's house too!
I can't wait to go back in the spring! It is only $5 to park your car, and then you can enjoy this wonderful park.

Vision Evaluation

Frankie had his vision evaluation by a TVI from the Carroll Center for the Blind, on Tuesday, during his EI class. She said she would recommend that he receive services from a TVI (herself) at preschool. So I am relieved about that! She seems really nice and Frankie liked her too.
We talked about braille as a backup to reading, and she said it might be a possibility, because his eyes will get fatigued. But we will wait and see when he is a bit older. She also said she would se something up with an O and M specialist!
Frankie also got his prisms off this week! Less than 3 weeks till surgery. : ( I feel more and more anxious.

Happy Balentine's Day!

. . . from Frankie! : )
Hope everyone had a nice day! Lizzy and I had a girls day out and had pedicures, lunch and an American girl game and craft time at the bookstore. John and Frankie went to "My Gym". In the evening we had dinner together, made and ate cupcakes, and played "hide the hearts"!

IEP update

We have the appointments set up for Frankie's evaluations and his IEP meeting! Last week he had his occupational therapy evaluation. He did well at many of the activities, drawing a circle, line, stacking blocks. He had some trouble making a block train that the teacher made first. He did a puzzle, he just took a little longer than normal. Didn't do too well on his colors.
Tomorrow is his functional vision evaluation at his EI class. I am nervous because there is not an orientation and mobility appointment set up yet. Hopefully I can get that squared away tomorrow too.
I wish I could stop feeling like a bundle of nerves ALL the time! I really can't wait until spring, when Frankie's surgery and IEP and done! And it's nice weather!

Gold Medal!!

Last weekend, Lizzy was in her first skating competition and won the gold medal!! She was so excited, it is hanging right by her bed! She did all her elements well, and deserved that medal. It was a really fun day and we went out to dinner to celebrate.
Go Lizzy!!

Fun Weekend

We had a jam packed and fun weekend. Lizzy had her Saturday morning skating, then John took the kids to the library while I went to a school planing meeting. Then we headed to Cape Cod to our favorite lunch place, The Dunbar Tea Shop, so yummy, the kids like it too. Lizzy loves the tea! Then we walked on the boardwalk to the beach and walked on the beach a bit. It was windy, so not too long. : )
Today after CCD and church, Lizzy and John went to the zoo, while Frankie and I went skating. He really wanted to go! He was holding onto his crate at first, but then got more brave and was skating over to me by himself, a little bit away! He loved it, I think he would still have been there, if he could! He has a lot of perseverance!!

Doctor Updates

So much has been going on, I feel in a whirlwind that will not stop! We went back to his eye doctor last week, in the snow, to get prisms stuck on his glasses. He does not seem to mind them and still gets around fine. They are making him very tired, because he has to struggle more to see, I think. They blur his vision, but are supposed to help align his eyes better before surgery. They are only on for 2 weeks! The other day is his EI class, his teachers said he was almost falling asleep!

He is having strabismus and nystagmus surgery in March, I am quite nervous and upset about it, even though I have been through the strabismus part with Lizzy. He will be having both eyes operated on, 2 muscles in each eye.

He also had bloodwork last week for genetic purposes, to see which tye of albinism he actually has. Next week he has the pre-op appointment and another appointment to get the prisims off, so we are doctors' offices a lot!
He has started the evaluations for preschool also, I will save that for another post.

My Gym, your gym

Frankie had his second class at My Gym today. He has liked both classes and asks, "Mama, when can we go to your gym?" It is so cute, and a logical conclusion! : )
The first week one of the instructors remembered him from last year and put tape on the bottom stairs of the ladders, so he knew when he was at the bottom. That works well for him, because the blue stairs and blue rug and difficult for him. The other instructor did not know his vision limitations and was abrupt with him when he was not sure where to go, sat on the wrong line, etc. So I talked to her today and she seemed to be more helpful towards him. So it is a good winter activity and he can practice his climbing, jumping, gross motor skills.

Frankie's Glasses

As soon as we got back from Disney, we picked up Frankie's new glasses!! He was so excited, as was Lizzy! : ) They only have a slight prescription, I don't think they do too much to help his vision. We are going back to the doctor on Wednesday to get the prisms put on, we'll see how good he wears them then.
He is doing well keeping them on now!

Disney World!!

We got back from Disney World last week! It was so much fun, we are planning our return trip in a few years. : ) Our favorite parts:
Winnie the Pooh breakfast at the Crystal Palace in Magic Kingdom
Buzz Lightyear laser tag ride in Magic Kingdom
Light parade and fireworks
Meeting Mickey Mouse
Getting pictures and autographs from characters
Little Mermaid show and Playhouse Disney show in Hollywood Studios
Toy Story ride in Hollywood Studios
Eating in Mexico in Epcot and the boat ride
Spaceship Earth ride in Epcot
Our hotel suite at Nickelodeon Suites, 2 bedrooms and yummy buffet breakfast
Warm weather (it was 7 degrees in Boston!)

20/200

Frankie went for a low vision evaluation today at the Perkins low vision clinic. They used the Lea pictures at a distance and up close, and his acuity came out to 20/200. I am still a little shocked. I knew when he is usually tested with the teller cards, the acuity of 20/60 was better than he really was, but now I know that he is actually legally blind. So I am still digesting it and trying to get a handle on it.
It may help us as we navigate the IEP process, getting him into the integrated preschool. I would think a child who is legally blind should get an IEP and services.

Motto Lotto

I am always proud of the kids, but I was especially proud of Lizzy today. Her school has a special motto, "Work hard, do the right thing and be your best self". They sometimes have assemblies with the whole school called "Motto Lotto", where they talk about examples of the motto, etc.
Lizzy planned, with some of her classmates, a Motto Team and they came up with a motto challenge in the lunch room. Tables that are living the motto for the week, will get a special privilege on the last day. It will start out with just first grade next week, and then the whole school. She came home with what she will say to the whole school on Monday, to present the idea. Her and 5 classmates will get up and get to use the microphone too! She has been practicing her part all evening, she is so proud and she seems soooooooo grown up! : )

Reasons for an IEP - Part 2

I looked at the reasons I had written back in July of this year. I am going to add/modify for Frankie now.

He has trouble pointing out things/animals etc. in books.
He has a hard time distinguishing some colors.
All animals are a sheep to him.
He has trouble with stairs, very slow and cautious.
New surroundings make for more of a chance to trip and he does not want to explore as much.
He trips over the bottom of door jams.
He trips over toys, small obstacles in his way.
He sometimes does not know his milk is there when it is right in front of him.
He cannot see a storybook when it is held by a teacher at the front of the room, even when he is sitting on the floor right in front of her and she is in a chair.
He needs his sunglasses and hat while outside and should not be in the sun for long periods of time.
He has trouble stacking small blocks.
He takes longer to scan when doing a puzzle to find where the piece goes.
He also cannot do a puzzle if it is too busy.
Things with similar colors blend together and he has a harder time picking something out.
He would not easily be able to recognize someone across the room.
At a familiar playground, has trouble locating other pieces of playground equipment, if they are far away.
At some unfamiliar playgrounds, has trouble walking across them; will stop and put his hand down, and shuffle very slowly.
He tilts his head down to help still his nystagmus.
He gets very close to a picture/book, to see it better.
If he drops something on the floor, he has a really hard time locating it.

I'm sure I will think of more later!

Lizzy and Frankie

I am always so happy to see Lizzy and Frankie together and the bond that they have! We were talking about college with Lizzy and we were saying how Frankie would be in high school when's she's in college and would miss her. She said she would go somewhere close by so she could come home and drive him to Vellos (his favorite restaurant)! So cute and caring!! : )
She has been helping me get him to eat too. She tells hm to launch his food up in the air and then put it in his mouth! Seems to do the trick!

Transistion/ IEP class

We were to stat our transition/ IEP class today at Perkins, but could not because of the snow and ice. I was looking forward to getting more info on the process, specifically related to vision. I feel the more information the better! More to follow next week.
I dropped off Frankie's paperwork at our integrated preschool yesterday, now waiting to sign and set up assessments for him in the next month or 2. I am going to have an OT, PT, mobility and vision assessments for him.

Harvard Square

Yesterday we went to Harvard Square. When driving by Harvard, Lizzy said, "It's even bigger than the Martha Jones!"(her elementary school) I thought it was so cute!

We went to the Harvard Museum of Natural History. There were many exhibits with animals, insects, dinosaurs, fossils and a storytime. The kids really enjoyed it. Lizzy learned a lot and Frankie enjoyed pointing to everything and saying, "What's this?"

We then headed to the Curious George store, Curious George and Friends. Frankie, of course, was thrilled and kept saying there were George's everywhere! Lizzy and I did birthday shopping for him for his birthday in May. : )

Ice Skating

Lizzy, John and I took Frankie skating for the first time today! We went with the kids' auntie and cousin, so it was a fun time. We went to Larz Anderson Park in Brookline, it is an outdoor refrigerated rink. They have an indoor place to put skates on, skate rentals, snack bar.
Frankie loved the ice and skating. There is a small rink on the side with milk crates for the kids to push. He pushed his 2 milk crates all around and loved it, he could have kept going and did not want to leave! I guess we need to get him his own skates now! It was really a fun morning for us all! I can't wait to go back next week!

Doctor Visit

I am a bit behind, Frankie had his eye checkup in the beginning of December. His vision with the teller cards, seemed to be at 20/60. They tried to get him to see the distance pictures, but he could not see them well enough to identify them. He did say a spider monkey, though, that was too funny! He also looked at pictures up close and could name some of them. The phone from the 1970's he had no clue what is was because he never saw one before!
His eyes are crossing more, each one takes a turn and he uses one at a time. So he is going to get glasses, they should be ready for pickup soon! We got ones with sunglasses that clip on. Then the doctor will stick on prisms that will blur part of his vision to get the eyes to go back to where they should be. After a few weeks, we will go back again and the doctor can see if the strabismus improved, which will aid in surgery. So he will probably end up with surgery towards the end of February. I am nervous about it!
We went to Lizzy' doctor for a second opinion, more on that in another post. Frankie is very excited about the glasses!

Happy New Year!

Happy 2009!!

We watched our town's fireworks tonight, from Lizzy's window, nice and warm! The kids loved them, Frankie had never seen them before. He cried when they were over and he had to go to bed. Tonight is an early night, since Lizzy stayed up to midnight last night! : )

Looking forward to our trip to Disney this month is 2009!

Hopefully everything with Frankie's eyes and surgery will go smoothly. More on that later.