Summer Days

So it's finally it triple digits here in the desert. Which means it's pool day everyday here in the Gardner household. As I've said before Oliana LOVES the water. She gets so much information with every movement in the water. She loves for me to throw her up in the air, dunk her under the water and wiggle, wiggle, wiggle, which is what Oli does best. Kekoa is a little more hesitant about the whole thing. He'll get on the steps but, that's as far as he goes. I'm hoping to do swim lessons with him to make him more comfortable. Koa has always been a little fearful of things.
I continue to be amazed at the response people have to Oli. I know she's memorable because she's blind but, I honestly think there's more to it than that. I think she would be special even without the blindness. There's just something about her that draws people to her. Just the other day we were leaving the pool and this father and his 3 kids came up to me and said, "Is that Oli?" I had never met this person and was thinking, "How in the heck does this guy know my daughter's name?" He came right up to her and said "Hi Oli, how are you?" Then he tells me that he met her last weekend at the pool. I said, "With Grandma and her cousins?" Seth and I had been out of town at the ICAN (international children's anopthalmia network) conference. The man couldn't remember who she had been with but, he sure remembered her. He just wanted to come and say hi to her. Things like that happen a lot with Oli. I guess it's teaching me to be more friendly around strangers, especially with her. I'm kind of protective of her, fearful that someone will make a dumb remark. That really doesn't happen so much anymore. Again, at the pool, there were some little girls asking questions about her. How old is she, what is her name, why does she keep splashing them? I told them that she was blind and couldn't see them but, could hear them. They looked at her and I thought, oh no, here it comes. The funny thing is, they didn't say anything about her eyes. They asked me why she had such a funny name! Kids will surprise you! They did ask me why she kept shaking her head. This is still an ongoing battle with Oli. Now when we tell her to stop shaking her head she gets so mad. She gets mad whenever I tell her no. Typical. (Kekoa right now is telling Oli to stop shaking her head. "Oli, no shaking your head!" "Mommy, Oli is shaking her head again" HA HA HA!!!)
So we went to the ICAN conference last weekend and learned so much. We learned more about the gene mutation SOX2. We think this is what Oliana has but we won't know for sure for a few more months. Basically it's characteristics include very delayed motor and speech development, pituitary and sex organ anomalies, and possibly (but not always) some form of mental retardation. Oliana is not walking by herself yet. She'll walk holding on to us but, is still very unsteady. She has delayed speech. 2 year olds usually have about 50 words and can form 2-3 word sentences. She's not there yet. She has about 10 words and has spoken a 2 word sentence one time that I can remember. She'll get there eventually it will just take her longer than others. That's why we have her in therapy and work with her at home so much. Her pituitary gland looks abnormal but, functions normally. She has 2 separate uterus's but, we are unsure about the rest of her female organs. Some girls with SOX2 are missing their ovaries. Sometimes the girls have very delayed or no periods because they don't produce enough estrogen. We're not sure yet about all that because she's to young. If the test comes back positive we'll have her followed by an endocrinologist when she gets older. As for the mental delays, we don't know yet. She's delayed in her speech so its hard to guess. She understands almost everything and follows directions. Our vision teacher thinks she's brilliant and that a lot of the weird stuff she does, she does because she's blind. When we talked to other parents and watched other blind children at the conference some kids do what she does and others didn't. Of course some of them were older and had learned proper social behavior. Shaking her head is the most noticeable. A lot of the kids did that. Oliana has her moments when she doesn't do it at all and other times, when it's loud, she does it continuously.
She's learning to go pee on her little potty so I guess that says something. I'll ask her if she has to go potty and sometimes she says yes. Other times she doesn't say anything. I go and sit her on the potty throughout the day and she usually will go. It's funny because right before she pees, she'll start clapping. When the clapping starts I know she's going to go. It's not as hard as I thought it would be, seeing that she can't walk or talk. I'm not sure how long it will be until she can wear underwear but, we're getting started.
So all in all, things are going okay. I was pretty upset to learn about the SOX2 stuff, but just like everything else we'll get through it. I've been reading a book by Patrick Henry Hughes and his father. It's called "I am potential". It's quite an amazing book. Patrick Henry was born with the same eye condition as Oli and is completely blind. He also has other physical limitations and is in a wheel chair. He is an a exceptional human being and reading his book has been quite an eye opening experience. I don't know him personally and have never met him but, I would encourage anyone reading this site to check out his book. I think I cried through most of it. It's a very touching, honest story about what it's like to be blind and in a wheel chair. Patrick Henry is a very talented young man who plays the piano and trumpet. I've had the privilege of hearing him play and sing on a couple of TV shows. His family has a great attitude and outlook on life and don't look at their situation the way most people would. He calls his blindness not a disability but, an ability. I prefer to think of Oliana in the same way. I hope to give her the confidence and independence that Patrick Henry's family has given to him. You never know, maybe some day Oliana will be out there giving performances and speeches about being a blind adult. Wouldn't that be something!!