What is Victor's background or ethnicity?
On his birthmother's side he is 4th generation Mexican. She told us a lovely story about her grandmother and how she arrived in the United States. It is a story to cherish and to share with Victor when he is older.
How old is he now?
Victor will be 9 months old on Monday but since his due date was July 26, his corrected age is 5 1/2 months.
How much does he weigh?
Last week he was 16 lb. 8 oz. He's very solid and compact. He loves to eat!
What is he doing these days?
Victor is behind his peers in most developmental areas. Sometimes it's hard to know if he's behind because he was born so early or if it's because he is blind. So many early developmental stages are vision motivated. For example, when asked at the doctor's office if Victor picks his head up when he's on his stomach, we don't know if his lack of ability to do so is because he has weak neck muscles or if it's because there's no reason for him to lift his head when there's no visual motivation to do so. In PT we are working on sitting and rolling over. He rolls belly to back but not the other way around. He practices sitting on the floor with our legs around him for support, in a small laundry basket, in the Boppy pillow, in the corner where the two sofas come together, anywhere we can! He is getting much stronger and can sit for a short time by himself. Last night he did so for several minutes which is a huge praise! His favorite activity is jumping. Any time he's in a standing position, he will jump. If you're holding him, look out, it's an arm workout! He is very verbal, trying to get as much in between the rest of the family members as he can. He is also very loud, especially when he's happy.
What can he see?
We won't really know the answer to this for a long time. There are times that we think he can see light and dark but his ophthalmologist says no. So maybe we just want to see a reaction.
Victor's blindness is from all the oxygen given to him as a preemie, right?
No! Victor's blindness is not related to his prematurity at all. He has a condition called septo optic dysplasia or bilateral optic nerve hypoplasia. As the eye doctor said, we will never know why it happened but it likely would have happened even if he had been born full term. Retinopathy of prematurity is the name for vision conditions due to prematurity and the amount of oxygen given to a newborn. When we came home from the NICU we were still waiting for this condition to regress (what you want) and that is why Victor had bi weekly visits with the ophthalmologist. It was because of these exams that Victor's vision loss was identified so early. If Victor had not been tortured by these exams on a regular basis, we would not have known that his optic nerves were not as they should be. Because we found out so soon, we were able to start him with vision therapy very early.
Can his blindness be corrected?
No. Your optic nerves either work or they don't. There is nothing to be done for them.
What does he do in vision therapy?
A lot of what happens in therapy is parent instruction. The special education teacher in me loves this part. I sometimes feel guilty that I enjoy this so much. I love learning how to teach him to use what he does have, his hearing and sense of touch mostly. We also talk about the future, orientation and mobility, schooling, activities, etc. She brings various toys and objects that make noise, have a different feel, or introduce him to new smells. And we talk, talk, talk. "Victor, Mommy is coming in your room now. Here I am. Here is your hand. I'm holding your hand. This is your right hand. Now I'm going to change your clothes. I'm taking your right hand out of your shirt. Now I'm going to take your left hand out. Now over your head...." No one likes to be surprised by having things happen to them without warning!
When will he learn to sign?
When the vision therapist told me that people were going to ask this question, I didn't believe her. But she was right. People do confuse the blind with the deaf so if you were thinking this question, don't feel bad. Maybe it's because people hear the word "blind" and automatically think of Helen Keller who was both blind and deaf. She did need to learn to sign. Victor, however, is blind but not deaf. As far as we can tell, he hears just fine. And if you've been around him, you know that there is absolutely nothing wrong with his vocal chords. He should be able to speak just fine. He will have many other difficulties in life, but speaking should not be one of them.
Other questions are not so easy to answer and will take us time to know him and his strengths and weaknesses better and to seek God's will for him. Will he be musical? How will we navigate Sunday School and other group activities? Where will he go to school? What kinds of technology will he need or use?
We do know this: God has plans for Victor just like He does for you. Those plans are all for Victor's best. They will grow him into the victorious adult God promised he would be. And all the glory goes to God!
****If you or your children are looking to understand blindness better, Tommy Edison has some great videos on youtube and most of them are family friendly. Just type in his name and you'll see many interesting topics: Can blind people draw? How blind people cook food alone. Etc.