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.