Lizzy's Eye Appointment

Lizzy had an eye doctor appointment yesterday. She has worn glasses since she was 3 (she is now 6) to correct near sightedness. When she was 3 her eye started to cross outward. Her vision in one eye was about 20/40, while the other was 20/500! (amblyopia). So she wore glasses and then we patched her good eye to make the bad one stronger. We patched most of the day for close to a year and her "bad" eye improved a lot. She still was not using both eyes together (strabismus) and underwent eye muscle surgery. This also helped and she now uses both eyes together and is not cross-eyed.
This past summer, her worse eye slipped to 20/40, so we began patching again. At this last appointment, her eyes were pretty much equal. So we can stop patching for now!
Lizzy loves going to the eye doctor. Dr. Reese is one of the kindest doctors I know. He is never in a rush and answers all your questions. He talks to Lizzy while he is examining her eyes and makes her feel so comfortable. She does not like getting eye drops in her eyes, so he first put them on her hands for her to see them. Now every time we go, even if she does not need drops, she asks for them on her hands. He patiently gives her a variety of colors! They would both still be there if I did not tell her it was time to go!

Pudding and Play-Doh

On Tuesday afternoon, Frankie's EI teacher and her student teacher came, along with the student teacher's supervisor. It was a bit late in the afternoon, 4:15, but Frankie did well for the first part. We started with a snack, by 4:15 he needs some extra energy! She was practicing dipping and biting with Frankie, instead of stuffing the whole cookie in. He got to dip in pudding. : ) He was hungry and ate for a while. He did some signs; more, me, and said me and cookie.
Next came Play-Doh and animals. He has not played with it too much yet, so it's an extra special treat! He was using a lot of language with the student teacher while he played; ball, roll, cow, moo, yes, no, horse . . .
Frankie then played with her on the floor a bit, with tools and bees. But he was getting tired and ready for dinner, it was almost 5:00, so he began to melt-down. But overall I think it was a success. I like that he can play and respond well to a variety of people.

"Talking"

Frankie is starting to talk more and more! His big sister, Lizzy, was talking in complete sentences by now, (21 months), but he still uses single words. Some are real words and some are word approximations. I had been a bit worried because he doesn't talk that much, but he is getting better and is more apt to imitate us and try new words. At his last EI session, he said 22 words or word approximations in a half hour! I thought that was pretty good.
He tends to put G's in front of words in place of the correct sound, such as; "gook" for book or "gead" for read. His EI teacher said it is common for kids to put a different sound at the beginning of a word, but not the G sound. That is a harder one, so it's funny he uses the G.
He has a few new favorite words, one is "doggie". He has always wanted to pet dogs, but recently he has started saying "doggie" too. We were visiting my grandmother and he was petting, feeding the dog and saying "doggie", it was fun. He also loves to say "apple", just starting this weekend. I asked him if he wanted apple yogurt and he said "apple". After he was done, he said "apple" again and I realized he wanted a piece of fruit.
It is just fun to watch him learn to say new words and be excited that he can say them. He likes that we understand and he gets what he is asking for!

Vision Update

It seems like a while since I last posted and now I have so much to blog about!
Frankie went to the eye doctor on Thursday, February 21. He first sees Dr. Sokol, an optometrist, who specializes in Visual Electrophysiology. On Thursday he started with the teller cards, large rectangular cards that he puts in front of Frankie. On one end are lines, and the other end is blank. The easier ones have the lines far apart and the harder ones (closer to 20/20) and very close together. Frankie in the past has just looked at the lines. This time he was pointing to the lines when he saw them and got all the way down to close to 20/60!! Six months ago, he was 20/90, and now he is in between 20/90 and 20/60, so improving! At other visits, Dr. Sokol has then hooked Frankie up with electrodes to a machine that can measure his vision, as well. He did not do that at this visit.
Frankie's TVI also came to this appointment, which was great for me because she could voice concerns, ask questions and explain information that I was confused about. Frankie was also excited to see her and happy to play with her while waiting for the doctors.
Next, Frankie saw Dr. Strominger, a neuro-opthamologist. He examined Frankie's eyes and used a lot of fashlights, Frankie did very well! He confirmed what I had been seeing, that Frankie's right eye does cross inward. He is going to measure it each time we go in, we go back in June. When the measurements are the same, then Frankie will get glasses. If the glasses do not correct the problem, surgery will be needed.
I think Frankie will look cute in glasses, but I fear trying to keep them on him all the time. He does pretty well with sunglasses, but they are not on all the time. If anyone has great tips, they would be appreciated!
The surgery part is scary for my. My daughter, Lizzy, did have eye muscle surgery, as well, 2 years ago. She is doing quite well now. So I will know what to expect, but it will still be nerve wrecking! With her I was nervous leading up to it, I did OK during and I felt the worse after. All the emotions seemed to come out after it was over. I also felt bad because she couldn't go outside and play, because sand or dirt might get in it. That will be an issue for Frankie too. But we will just take it as it comes and be glad now that his vision improved!

Bowl-A-Thon 2008

Today we participated in our second NOAH bowl-a-thon! We went to one last year and decided to organize our own this year, it was a lot of fun. I want to start by thanking everyone who was able to come bowl with us. It was great to have so many family and friends with us and supporting us. Thank you to everyone who donated to NOAH also. It means a lot to us.
Frankie was sick, double ear infections, so he was not able to come to the bowl-a-thon, so he stayed home with Daddy. He did do a little bowling downstairs with his kiddie bowling set. I got a picture of him tonight with the pins, ball, and 2 golf clubs! : ) I plan to send NOAH a group photo from the bowl-a-thon and Frankie at his own bowl/golf-a-thon!!
We had about 40 people bowling today, lots of kids too. We all then had pizza and cupcakes made by Lizzy.
It was also great to meet a few new people. A man with albinism and his fiance, and another lady who's daughter has albinism. I find it so great and comforting to meet other people who are connected to albinism. They were so nice!
Again, thank you to everyone who participated and donated!! We couldn't have done it without you!

"All Children Have Different Eyes" Book

My husband and I gave Frankie and Lizzy books for Valentine's Day, and one was called "All Children Have Different Eyes, Learn to play and make friends", by; Edie A. Glaser and Maria Burgio, Ph.D. They enjoyed listening too it and I think it is a great book for children, talking about a variety of visual impairments.
The main character in the first chapter has nystagmus, or "Jell-O eyes". It explains how he needs to sit close to the board in school and he explains to other kids why he needs to do things a certain way. The next chapter talks about different visual problems, such as albinism, cataracts and color blindness. Lizzy was excited to see the girl with albinism.
The last chapter is devoted to a girl who has strabismus, a lazy eye, which is what Lizzy has. The girl in the story wears a patch, so that was cool for her to see. She also explains about her eye condition to her friends. I thought it was a great book because it touched on many different eye conditions and showed ways to talk to others about eyesight. In the back are activities to help with social competency, which can be difficult for children with low vision. The pictures were fun and bright too!

Happy Valentine's Day!

Valentine's Day seems like a good day to reflect on loved ones, those family and friends who help us through hard times. So thank you to all my wonderful family and friends, I love you!
Today was an exciting day for Lizzy and Frankie; cookies, candy, cards, presents, books (one of which will be discussed in my next blog). Poor Frankie was sick, but still enjoyed his sprinkled sugar cookie!
On another note, my grandfather passed away today, he is the first grandparent I have lost. He was 88 years old. I know how lucky I have been to have all of my grandparents around for so long, but it is still hard. I feel sad for my dad, who lost his dad.

Looking ahead . . .

I have been thinking about school for Frankie a lot lately. I registered him for his EI class today and he is in the same age group he was last time with the same teacher in the same room. For the next session in June, he will be ready for "Two Time", in which he goes by himself and I go to a parent group. He is not good at separating from me (unless it's family), so I think it will be hard. I am happy, though, that he can be in the same classroom he is now. He knows the layout and where his favorite toys are. I can imagine him in a new room without me would be very hard. It has taken him a while to explore this whole room with me there.
I know as he gets older, he will be in unfamiliar rooms, but I want his first experience away from me to be as positive as possible. If he knows where his favorite toys are, that will help! I think positive first experiences lead to other positive experiences down the road. And it is also helpful for me to think about his TVI coming into his classroom as he starts school to guide him and his teachers.

Kids Fun Stop

Frankie and I went to Kids Fun Stop today, his 3rd visit. It is an indoor playground, complete with slides, climbing structures, cars, trikes, a large fire engine, a play house, dolls, sand table, a mini carousel, crafts and plenty of room to move!! He does really well on the structures, they are all perfectly sized for toddlers. Things are spaced appropriately with ample room in between. There is an area that Frankie has not ventured to, but he loves the slide, cars and house. There is even a Curious George by the house!
There is an area that is fenced off, but in view, for babies under 1, I believe. And a snack room, as well. We are usually so busy, we do not even stop to snack. They have birthday parties and mommy and me classes, also.
Overall, Frankie and I enjoy it here. I think it is a place that vision impaired children can get around in pretty well. It has been pretty crowded, but he still does quite well. I think the size of it is key to him having enough room. I usually stay in one spot, so he knows were to look for me.

Hadley School

From the time Frankie was first diagnosed with albinism, my family and I have tried to find as much information as we can. NOAH was one of the first websites we found and has been great in connecting us with others and providing us with information. I keep adding to the "Resources" sidebar, and they really are great resources. I want to take time to cover each one and what is important about it, how it has helped me, etc.
The Hadley School for the Blind will be my focus tonight. It provides online leaning to blind and visually impaired people, their families and teachers of the visually impaired. I have been interested in the early childhood and elementary courses for families. "Learning through Play" looks like a great one! It offers suggestions to parents about teaching your visually impaired child, through play and the world around them. They offer classes in braille, as well, which I would like to learn, maybe if Frankie needs to learn it in the future. The courses in O and M (orientation and mobility) provide ideas on how best to structure your home for a visually impaired child. The 3 social skills classes help with special concerns that vision impaired kids face socially. I have not gotten to take a class with them yet, but will write about it when I do.

"Jump, Jump went the Little Green Frog"

Frankie and I went back to "Books and Babies" storytime at the library today. We go their early so that we could get a good seat. Frankie got a mat to sit on, and we put it close up in the front near the storyboard, where the librarian sits. I wanted to ask her ahead of time what the story was about so I could bring a prop, but did not get a chance this week!
Frankie did much better than last time. Sitting close helped him to look in that direction and see a little more of it, I think. He even got up to jump a little to "Jump, Jump went the Little Green Frog". Overall it was a much better experience than last time and we made it to the end to get a sticker!!