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.