So, Monday, our interventionist came over and went over Buddy's progress. She was very excited with everything that he is doing. He showed her how mobile he is, and how interested he is in getting into everything, as well as playing peek-a-boo. We also told her about things like his mimicking sounds we make and how friendly he is. She kept saying, "that's a 10 month skill..." over and over. (Buddy was just past 10 1/2 months for the visit.) I finally asked her if she was using a list for visually impaired children, and she wasn't. She said that he is right on target with all of his development, and he was well above his age level for his interpersonal skills, which I think is great, because that was what they were worried about before. So, at the moment, we are at a "No Big Deal" stage.
We have been working with Buddy on clapping. He understands what we are asking him to do, but a lot of the time, he just looks at us like, "why do you want me to bring my hands together repeatedly? You are weird." While the interventionist was here, he actually did clap for us, and we cheered so loudly we scared him. Finally, today, he started clapping again. It still takes a lot of work from us, but he is starting to get it. We are so proud of him.
He is just starting to show interest in books, and yesterday we looked at a puzzle. The puzzle said for ages 1+, but he likes holding the pieces, so I figured we'd play with it.
We are supposed to work on waving, too.
When I first started this blog, it was partially because I needed somewhere to write down my thoughts, and partially because I couldn't find many resources on the web that gave information for other parents going through what we are. I realize that part of this is that after the initial shock, it's just not that scary and there isn't as much to say.
I did find another blog with occasional posts by a mother of a child with nystagmus in the UK, and earlier this month, she re-posted a post from another blog written by a woman with nystagmus. Here is a link to that particular post. I will put links to both of the blogs on my resources page.
Sunday, September 29, 2013
Monday, September 16, 2013
Peek-a-boo!
In Buddy news, we have had tons of fun lately. We bought him a bouncy seat (the kind that hangs from a door frame), and he loves it. He has figured out how to make it spin in circles and swing back and forth, on top of bouncing. We got it at an amazing consignment sale, and it was well worth the $7.50 we paid for it. When we first put him in it, he didn't want to do anything other than bounce. He didn't ask to be fed, or want to do anything but bounce.
A big THANK YOU!!! goes out to Emily, the owner of Bouncin' Big!, who invited all of the kids (and their families) that are served by the Division of Blind Services to spend the morning bouncing a few Saturdays ago. Buddy loves bouncing, and had quite a morning. It was nice to have somewhere fun to take Buddy, and it was also nice to get to meet other families.
Friday, he got his first hair cut. Some of it was past shoulder length, and in front it was past his nose. We kept putting off cutting it because he's a baby and a haircut would change everything. However, I'm so glad we did it. I think he is possibly even cuter now. We had an awesome stylist that loved playing with him, and she was very patient with him. Every time she tried to cut the hair on the back of his head, he would try to look at what she was doing and turn his head. She was amazing, though, and kept giving him combs and clips to play with and kept right on going. She also made sure I got the clippings so that I could keep a lock of his baby hair.
Also on Friday, the Buddy's Daddy started saying, "Mwahahahaaa," which Buddy thought was quite funny. By the end of the night, if you said, "Mwahahahaa," Buddy would giggle and say, "Ha...Ha...Ha" back. This is, of course, very cute, but it also made me happy because he is supposed to be imitating us now. He still doesn't do facial expressions (unless you count sticking your tongue out and going, "Pppppbbbbbbbbtttttttttt"), but I think imitating sounds is good, too.
Wednesday was my grandfather's 90th birthday, and on Saturday we went to his party. We had lunch at a nice restaurant on the St. Johns river, and Buddy was very well behaved the entire time. My parents were nice enough to take him outside and walk around while we waited for the food to be served, but while we were eating, he quietly snacked on french fries and a few bites of chicken and didn't make too much of a mess. He spent the afternoon playing nicely and spending time with the family. He also got to play with a balloon for the first time. We were so proud of him for being so good, and it was nice for him to get to spend some time with the family. They were all interested in his progress, and it is nice to see him doing so well.
Saturday's biggest accomplishment was playing peek-a-boo. People have been playing it with him lately, and his babysitter may have been practicing with him, but I don't know. We were waiting to eat lunch and my dad gave Buddy a napkin to play with. I think I put it over his face to play peek-a-boo, but after the first time, he just started lifting the napkin up in front of his face on his own. He is so cute to watch. A few times, the napkin was only covering one of his eyes, and he stopped to rearrange it to cover both. He varies the time that he covers his face, and waits for you to say "peek-a-boo!" when he uncovers his face. If you don't say it fast enough, he stares at you as if to say, "well, don't you know what comes next?"
Buddy is 10 months old now, and he is doing so well. He has six teeth, and has become a biter. We are working on the not biting and not hair-pulling, as these are both painful for the mommy and others. We are also working on being quiet in church, which is quite an endeavor. However, I think it will be much easier and reasonable to train a baby than to re-train an older child who doesn't understand why he used to get his way and be walked around and entertained during services and is now expected to behave. (We are not unreasonable. He can play with quiet toys on our laps, just not expect that he can fuss and then get up and be walked around in the middle of the service.) We are also working on clapping, but he doesn't seem to understand WHY he should spend time bringing his hands together.
Having Buddy is so much fun, and rewarding. I didn't realize that seeing a baby learn to play peek-a-boo, or repeat a phrase would be so exciting. The next month and a half should also be quite eventful, as he learns something new all the time, and I get the excitement of planning the Buddy birthday party, which is going to have an ocean theme.
'Til next time!
A big THANK YOU!!! goes out to Emily, the owner of Bouncin' Big!, who invited all of the kids (and their families) that are served by the Division of Blind Services to spend the morning bouncing a few Saturdays ago. Buddy loves bouncing, and had quite a morning. It was nice to have somewhere fun to take Buddy, and it was also nice to get to meet other families.
Friday, he got his first hair cut. Some of it was past shoulder length, and in front it was past his nose. We kept putting off cutting it because he's a baby and a haircut would change everything. However, I'm so glad we did it. I think he is possibly even cuter now. We had an awesome stylist that loved playing with him, and she was very patient with him. Every time she tried to cut the hair on the back of his head, he would try to look at what she was doing and turn his head. She was amazing, though, and kept giving him combs and clips to play with and kept right on going. She also made sure I got the clippings so that I could keep a lock of his baby hair.
Also on Friday, the Buddy's Daddy started saying, "Mwahahahaaa," which Buddy thought was quite funny. By the end of the night, if you said, "Mwahahahaa," Buddy would giggle and say, "Ha...Ha...Ha" back. This is, of course, very cute, but it also made me happy because he is supposed to be imitating us now. He still doesn't do facial expressions (unless you count sticking your tongue out and going, "Pppppbbbbbbbbtttttttttt"), but I think imitating sounds is good, too.
Wednesday was my grandfather's 90th birthday, and on Saturday we went to his party. We had lunch at a nice restaurant on the St. Johns river, and Buddy was very well behaved the entire time. My parents were nice enough to take him outside and walk around while we waited for the food to be served, but while we were eating, he quietly snacked on french fries and a few bites of chicken and didn't make too much of a mess. He spent the afternoon playing nicely and spending time with the family. He also got to play with a balloon for the first time. We were so proud of him for being so good, and it was nice for him to get to spend some time with the family. They were all interested in his progress, and it is nice to see him doing so well.
Saturday's biggest accomplishment was playing peek-a-boo. People have been playing it with him lately, and his babysitter may have been practicing with him, but I don't know. We were waiting to eat lunch and my dad gave Buddy a napkin to play with. I think I put it over his face to play peek-a-boo, but after the first time, he just started lifting the napkin up in front of his face on his own. He is so cute to watch. A few times, the napkin was only covering one of his eyes, and he stopped to rearrange it to cover both. He varies the time that he covers his face, and waits for you to say "peek-a-boo!" when he uncovers his face. If you don't say it fast enough, he stares at you as if to say, "well, don't you know what comes next?"
Buddy is 10 months old now, and he is doing so well. He has six teeth, and has become a biter. We are working on the not biting and not hair-pulling, as these are both painful for the mommy and others. We are also working on being quiet in church, which is quite an endeavor. However, I think it will be much easier and reasonable to train a baby than to re-train an older child who doesn't understand why he used to get his way and be walked around and entertained during services and is now expected to behave. (We are not unreasonable. He can play with quiet toys on our laps, just not expect that he can fuss and then get up and be walked around in the middle of the service.) We are also working on clapping, but he doesn't seem to understand WHY he should spend time bringing his hands together.
Having Buddy is so much fun, and rewarding. I didn't realize that seeing a baby learn to play peek-a-boo, or repeat a phrase would be so exciting. The next month and a half should also be quite eventful, as he learns something new all the time, and I get the excitement of planning the Buddy birthday party, which is going to have an ocean theme.
'Til next time!
Monday, July 29, 2013
Fantastic!
The past couple of weeks have been great for Buddy. We went to the ophthalmologist and she was very impressed with his progress. He was doing so well they even called in a second doctor just to show him off! He is still nearsighted. They said that he has to return in six months and have his eyes dilated. They will decide whether or not he will get glasses for the nearsightedness then. The glasses will not fix the problem of ocular albinism, but they may be necessary anyway.
Last weekend, we visited friends a few hours away. We had a great time. We attended a princess birthday party, so I made beaded crowns for the three of us and we all dressed up like royalty to attend the party. The next day, we went to the beach. This time, I sat with Buddy at the very edge of the water, so only a few waves reached us. Every time we got wet, I said "OOOOOOOhhhhhhh" and Buddy laughed and squealed and had a fantastic time. He played in the sand and tried to eat some seaweed, and thoroughly enjoyed himself. Our friends have a much larger house than we do, and it has carpet. Buddy spent most of his weekend crawling around, pulling up on furniture, and looking out of their sliding glass door. He now has rug burn and callouses on his knees, but I guess that means he's just getting used to being a boy. He had the best time. He also got to try sweet potatoes and bread, and he liked both very much. He has learned to swallow much better than before.
Perhaps the best milestone for the weekend was that for the first time, he showed interest in another baby. The friends we stayed with had an infant, and Buddy crawled right over to him, patted him gently, and gave him a kiss. We spent some time with some other friends who have a baby just a couple of months older than Buddy, and he crawled right up to him and tried to kiss him, too. He was genuinely interested in spending time with the other babies. In the past, Buddy just seemed oblivious to other babies and children (although he was interested in adults), so we were thrilled about his interest in other children his size. Yay for interpersonal relationship skills!
Last weekend, we visited friends a few hours away. We had a great time. We attended a princess birthday party, so I made beaded crowns for the three of us and we all dressed up like royalty to attend the party. The next day, we went to the beach. This time, I sat with Buddy at the very edge of the water, so only a few waves reached us. Every time we got wet, I said "OOOOOOOhhhhhhh" and Buddy laughed and squealed and had a fantastic time. He played in the sand and tried to eat some seaweed, and thoroughly enjoyed himself. Our friends have a much larger house than we do, and it has carpet. Buddy spent most of his weekend crawling around, pulling up on furniture, and looking out of their sliding glass door. He now has rug burn and callouses on his knees, but I guess that means he's just getting used to being a boy. He had the best time. He also got to try sweet potatoes and bread, and he liked both very much. He has learned to swallow much better than before.
Perhaps the best milestone for the weekend was that for the first time, he showed interest in another baby. The friends we stayed with had an infant, and Buddy crawled right over to him, patted him gently, and gave him a kiss. We spent some time with some other friends who have a baby just a couple of months older than Buddy, and he crawled right up to him and tried to kiss him, too. He was genuinely interested in spending time with the other babies. In the past, Buddy just seemed oblivious to other babies and children (although he was interested in adults), so we were thrilled about his interest in other children his size. Yay for interpersonal relationship skills!
Sunday, July 7, 2013
Fun Times with Buddy
Since the last update, Buddy has had several firsts. We took him
swimming in a lake, which he loved. Yesterday was his first time going
to the beach. We went to the Gulf, so that my sister could come, and
the water was a bit calmer than the Atlantic, which helped Buddy. He
had a great time, and actually fell asleep in his float. We love going
to places with water, so I'm glad Buddy enjoys himself.
On Thursday, we went to the Orlando Wetlands Park to look for birds. My mom pushed Buddy in the stroller and entertained him, and after awhile he took a nap. I do not think he could see any of the birds, but I do think he had a nice time. After we came home, we got some lunch and then loaded up in the car to see the other grandparents. Buddy had a fantastic time crawling, playing with the dog, and tearing up a huge pile of tissue paper that my mother-in-law had ready to pack away for future gift-giving occasions. He likes the crinkling noise.
We have seen so much growth over the past several months. Buddy is doing so well. On Mother's Day, he took a few steps while holding onto the couch. For Father's Day, he started saying "Dada" and "Mama." He pulls up on furniture and walks around, and if something is too far for that, or there is no furniture, he lowers himself carefully to the floor and crawls to get it. This morning we were playing, and I was amazed to see how aware he was that if he just let go of what he was holding onto, he would fall. He doesn't let anything stop him from getting to what he wants, but he has also learned to move carefully.
Our interventionist came again on Monday. She says Buddy is doing really well, and lately she has been bringing books and toys for Buddy. She has brought several things that are black and white, and Buddy loves those. There is a group called Little Seedlings that adapts children's books with Braille. Buddy does not really need Braille right now, and we have been told that he will be able to read regular books when he is older, but it is really cool to have them. They are also books with bright colors, some sparkles, and raised pictures with texture, so they are very interesting for Buddy. One of them is actually a glove with five black and white finger puppets, and a book in the palm of the glove. That is one of the newest, and most popular.
Now for the roller-coaster part--Buddy is doing so well, and we are so pleased, but then we have to think about the areas where he still has to work to stay on track, like inter-personal skills, and seeing small objects. This is kind of depressing, so I try not to dwell on it. The interventionist asked us if Buddy could see small things (like a cheerio) and pick them up. He hadn't tried anything that small, but after she left, we tried letting him have some rice chex. He could see them and pick them up out of my hand, but not off of the tray of his highchair. Yesterday, he had some chex at his grandparents, and he started eating them off of the tray of their highchair with no problem. Today, he was able to find them at home, too. That was really encouraging. Now if he would just eat vegetables.
One of the things that he is supposed to start doing in the next month or two is mimicking facial expressions. He may have some trouble with this, but we are going to be working on it anyway. He can see things that light up (like the iPad) from pretty far away, but he only sees people at about three feet, and doesn't notice faces until they are much closer. We will be working with him on that by starting out close and then moving farther away from him and asking him to continue watching us.
Unrelated to his vision, he is also to the point of being old enough to learn about the word "no." Since he wants to explore everything, this is important for him to learn, but so far, he is a very stubborn and persistent little boy, although yesterday he seemed to be responding. I suppose persistence will help him with learning to do hard things, but it can make parenting a challenging task.
On Thursday, we went to the Orlando Wetlands Park to look for birds. My mom pushed Buddy in the stroller and entertained him, and after awhile he took a nap. I do not think he could see any of the birds, but I do think he had a nice time. After we came home, we got some lunch and then loaded up in the car to see the other grandparents. Buddy had a fantastic time crawling, playing with the dog, and tearing up a huge pile of tissue paper that my mother-in-law had ready to pack away for future gift-giving occasions. He likes the crinkling noise.
We have seen so much growth over the past several months. Buddy is doing so well. On Mother's Day, he took a few steps while holding onto the couch. For Father's Day, he started saying "Dada" and "Mama." He pulls up on furniture and walks around, and if something is too far for that, or there is no furniture, he lowers himself carefully to the floor and crawls to get it. This morning we were playing, and I was amazed to see how aware he was that if he just let go of what he was holding onto, he would fall. He doesn't let anything stop him from getting to what he wants, but he has also learned to move carefully.
Our interventionist came again on Monday. She says Buddy is doing really well, and lately she has been bringing books and toys for Buddy. She has brought several things that are black and white, and Buddy loves those. There is a group called Little Seedlings that adapts children's books with Braille. Buddy does not really need Braille right now, and we have been told that he will be able to read regular books when he is older, but it is really cool to have them. They are also books with bright colors, some sparkles, and raised pictures with texture, so they are very interesting for Buddy. One of them is actually a glove with five black and white finger puppets, and a book in the palm of the glove. That is one of the newest, and most popular.
Now for the roller-coaster part--Buddy is doing so well, and we are so pleased, but then we have to think about the areas where he still has to work to stay on track, like inter-personal skills, and seeing small objects. This is kind of depressing, so I try not to dwell on it. The interventionist asked us if Buddy could see small things (like a cheerio) and pick them up. He hadn't tried anything that small, but after she left, we tried letting him have some rice chex. He could see them and pick them up out of my hand, but not off of the tray of his highchair. Yesterday, he had some chex at his grandparents, and he started eating them off of the tray of their highchair with no problem. Today, he was able to find them at home, too. That was really encouraging. Now if he would just eat vegetables.
One of the things that he is supposed to start doing in the next month or two is mimicking facial expressions. He may have some trouble with this, but we are going to be working on it anyway. He can see things that light up (like the iPad) from pretty far away, but he only sees people at about three feet, and doesn't notice faces until they are much closer. We will be working with him on that by starting out close and then moving farther away from him and asking him to continue watching us.
Unrelated to his vision, he is also to the point of being old enough to learn about the word "no." Since he wants to explore everything, this is important for him to learn, but so far, he is a very stubborn and persistent little boy, although yesterday he seemed to be responding. I suppose persistence will help him with learning to do hard things, but it can make parenting a challenging task.
Monday, May 27, 2013
Progress and an Explanation
I hope you had a great Memorial Day. Thank you to everyone who serves to keep our country safe and free.
I am so excited with Buddy's progress. He is sitting up and standing well enough that I let him stop using his special bath seat, which he had to lay down in. I was afraid that he would fall over before, but now he is doing so well I let him try just sitting in the water. He was so good. He sat very still and didn't even start to fall over. Also, he can stand up with my support to make rinsing easier. I was beginning to wonder if he would ever get to this point, but he is doing so well.
He still isn't really crawling, although he tries. On Saturday, he reached out and held on to me while "walking" his knees up to me so that he was kneeling in front of me! For a little boy who was having trouble before, he certainly is making up for lost time! On Saturday, he also started getting up on his knees in his crib so that he can turn on his mobile himself. Such a smart little boy!
Since part of the point of this blog is to be informative, I wanted to explain why the sitting up and moving around is such a big deal. At first, all I knew was that his pediatrician was not pleased with his level of physical development, but she said it might have something to do with his vision and not to be too concerned about it until after his early steps evaluation. I thought, what does sitting up have to do with vision? I mean, really, that seemed like just using his disability as an excuse for everything. Our interventionist from the Division of Blind Services was the one who really explained it. Normally, a baby hears a noise and turns to see what caused the noise. Babies with poor vision turn and see nothing. So, they learn to listen very carefully. If you're moving around, you don't hear as well. Buddy learned to be very still when he heard a noise so that he could hear it clearly. This is great for hearing, but he was missing a key part of his development that way. All of the turning his head to look at things would have strengthened his core muscles so that he could hold himself up and move around, but he didn't move, and so his muscles were weak. We didn't know any of this, and we didn't know we had to make him move. His vision improved to the point that he could see more of the things around him and he wanted to get to them, so he was moving more. We also started making him do more of the work to hold himself up when we carried him, and he has just taken off.
We are amazed every day by the new things he does.
I am so excited with Buddy's progress. He is sitting up and standing well enough that I let him stop using his special bath seat, which he had to lay down in. I was afraid that he would fall over before, but now he is doing so well I let him try just sitting in the water. He was so good. He sat very still and didn't even start to fall over. Also, he can stand up with my support to make rinsing easier. I was beginning to wonder if he would ever get to this point, but he is doing so well.
He still isn't really crawling, although he tries. On Saturday, he reached out and held on to me while "walking" his knees up to me so that he was kneeling in front of me! For a little boy who was having trouble before, he certainly is making up for lost time! On Saturday, he also started getting up on his knees in his crib so that he can turn on his mobile himself. Such a smart little boy!
Since part of the point of this blog is to be informative, I wanted to explain why the sitting up and moving around is such a big deal. At first, all I knew was that his pediatrician was not pleased with his level of physical development, but she said it might have something to do with his vision and not to be too concerned about it until after his early steps evaluation. I thought, what does sitting up have to do with vision? I mean, really, that seemed like just using his disability as an excuse for everything. Our interventionist from the Division of Blind Services was the one who really explained it. Normally, a baby hears a noise and turns to see what caused the noise. Babies with poor vision turn and see nothing. So, they learn to listen very carefully. If you're moving around, you don't hear as well. Buddy learned to be very still when he heard a noise so that he could hear it clearly. This is great for hearing, but he was missing a key part of his development that way. All of the turning his head to look at things would have strengthened his core muscles so that he could hold himself up and move around, but he didn't move, and so his muscles were weak. We didn't know any of this, and we didn't know we had to make him move. His vision improved to the point that he could see more of the things around him and he wanted to get to them, so he was moving more. We also started making him do more of the work to hold himself up when we carried him, and he has just taken off.
We are amazed every day by the new things he does.
Monday, May 20, 2013
No Big Deal
Hi, Everyone!
Buddy has come so far in the past month. Can you believe he is 6 1/2 months old? It's hard to believe that he used to be the baby that barely interacted with his surroundings.
Buddy is actually sick at the moment, which is scary for his parents (and of course miserable for him), but his eyes are doing really well. He won't wear his sunglasses, but he loves being outside. He got to stick his feet in the grass for the first time. I think he liked it. He still loves hard rock, but we are sneaking in a bit of classical without him complaining about it. His grandparents got him a "glow seahorse," which is like the glowworms that everyone had when I was growing up. His interventionist suggested it, and he loves it. It plays classical music, and the stomach lights up. It is really one of his favorites.
He can sit up, but he doesn't want to. Not wanting to sit up is a lot less scary to me than not being able to. He scoots and rolls all over the place.
For his six month birthday, he got to eat some bananas. He loves bananas. He does not like green beans and carrots. :( I would rather have bananas than green beans and carrots, too, but at some point, he will have to learn to eat them anyway. He has also figured out how to hold his bottle, which took awhile, but he finally got it!
He likes to lick everything. On Mother's day, Daddy put him down in front of the couch, standing up, holding on to the couch. Buddy decided that he had to lick my knee (I'm sure it was very important for his nutritional needs) and it was too far away for him to reach. He actually took two steps holding on to the couch to get to me. We were so proud of him.
He does get up on his hands and knees, but he doesn't know how to coordinate all of his limbs for movement yet.
The best part is that he does seem to be seeing things that are farther away than before. He recognizes things in his environment and likes to play.
We know that there are still challenges ahead, but for the moment, all of the good things that are happening make the problems seem like NO BIG DEAL.
Have a great day!
Buddy has come so far in the past month. Can you believe he is 6 1/2 months old? It's hard to believe that he used to be the baby that barely interacted with his surroundings.
Buddy is actually sick at the moment, which is scary for his parents (and of course miserable for him), but his eyes are doing really well. He won't wear his sunglasses, but he loves being outside. He got to stick his feet in the grass for the first time. I think he liked it. He still loves hard rock, but we are sneaking in a bit of classical without him complaining about it. His grandparents got him a "glow seahorse," which is like the glowworms that everyone had when I was growing up. His interventionist suggested it, and he loves it. It plays classical music, and the stomach lights up. It is really one of his favorites.
He can sit up, but he doesn't want to. Not wanting to sit up is a lot less scary to me than not being able to. He scoots and rolls all over the place.
For his six month birthday, he got to eat some bananas. He loves bananas. He does not like green beans and carrots. :( I would rather have bananas than green beans and carrots, too, but at some point, he will have to learn to eat them anyway. He has also figured out how to hold his bottle, which took awhile, but he finally got it!
He likes to lick everything. On Mother's day, Daddy put him down in front of the couch, standing up, holding on to the couch. Buddy decided that he had to lick my knee (I'm sure it was very important for his nutritional needs) and it was too far away for him to reach. He actually took two steps holding on to the couch to get to me. We were so proud of him.
He does get up on his hands and knees, but he doesn't know how to coordinate all of his limbs for movement yet.
The best part is that he does seem to be seeing things that are farther away than before. He recognizes things in his environment and likes to play.
We know that there are still challenges ahead, but for the moment, all of the good things that are happening make the problems seem like NO BIG DEAL.
Have a great day!
Sunday, April 14, 2013
Development
We have been so busy for the last 2 weeks (or was it 3-I can't remember).
We saw the geneticist, and he felt that ocular albinism was an appropriate diagnosis, and Buddy will have two blood tests (for genetic testing) to confirm this. What I did not understand before this visit was that ocular albinism can be caused by other syndromes. I thought OA was a thing, and that was it. Sometimes, it is (if it is caused by a mutation in gene GPR 143-at least I think that is what it is), and sometimes, apparently, it is part of something bigger. So now, we have to make sure that it is not a part of something bigger. This was very scary to find out, but I'm feeling better with time.
On Easter, Buddy had a "seizure-like" episode. He seems fine, now. We took him to the ER, but by the time we got there, he was back to normal. They listened to my description of the sudden shivering movement and the deep sleep that followed, and said it sounded like a possible seizure. We have now seen a neurologist and his pediatrician, and neither of them are convinced that it was a seizure. They are calling it a "seizure-like episode" because they don't know what happened. We went for an EEG to find out for sure if it was a seizure or not, but we haven't gotten the results yet. My husband finally called to ask about it, and they told him, "No news is good news!" Really? We are still waiting.
For Buddy's development, we have had two assessments. Two Thursdays ago, we went to see the specialists at the Early Steps program. They played with Buddy and tested all of his skills. We were so proud of him. He did a great job. The said that he was slightly behind in development compared to a baby with normal vision, but if they had tested him with a test that was meant for a baby with a visual impairment, he would have been above average. They are referring us to physical therapy to see if we can help Buddy improve even more.
The interventionist from the Division of Blind Services came and assessed him last Thursday with a test designed for children with visual or hearing impairments, and he measured on a level between 5 and 6 months, which interestingly enough, he just happens to be.
Because of the seizure-like episode, we went back to the pediatrician at 5 months. She had been concerned about his development at 4 months, but she said to wait and see what the Early Steps people said, since they specialize in development, and would have a plan to help if necessary. When she saw Buddy this time, she was so impressed by his progress in the past month; she said he was like a totally different baby.
We are so proud of him and how far he has come. I will try to post soon about the Early Steps program plan and all of Buddy's new skills!
We saw the geneticist, and he felt that ocular albinism was an appropriate diagnosis, and Buddy will have two blood tests (for genetic testing) to confirm this. What I did not understand before this visit was that ocular albinism can be caused by other syndromes. I thought OA was a thing, and that was it. Sometimes, it is (if it is caused by a mutation in gene GPR 143-at least I think that is what it is), and sometimes, apparently, it is part of something bigger. So now, we have to make sure that it is not a part of something bigger. This was very scary to find out, but I'm feeling better with time.
On Easter, Buddy had a "seizure-like" episode. He seems fine, now. We took him to the ER, but by the time we got there, he was back to normal. They listened to my description of the sudden shivering movement and the deep sleep that followed, and said it sounded like a possible seizure. We have now seen a neurologist and his pediatrician, and neither of them are convinced that it was a seizure. They are calling it a "seizure-like episode" because they don't know what happened. We went for an EEG to find out for sure if it was a seizure or not, but we haven't gotten the results yet. My husband finally called to ask about it, and they told him, "No news is good news!" Really? We are still waiting.
For Buddy's development, we have had two assessments. Two Thursdays ago, we went to see the specialists at the Early Steps program. They played with Buddy and tested all of his skills. We were so proud of him. He did a great job. The said that he was slightly behind in development compared to a baby with normal vision, but if they had tested him with a test that was meant for a baby with a visual impairment, he would have been above average. They are referring us to physical therapy to see if we can help Buddy improve even more.
The interventionist from the Division of Blind Services came and assessed him last Thursday with a test designed for children with visual or hearing impairments, and he measured on a level between 5 and 6 months, which interestingly enough, he just happens to be.
Because of the seizure-like episode, we went back to the pediatrician at 5 months. She had been concerned about his development at 4 months, but she said to wait and see what the Early Steps people said, since they specialize in development, and would have a plan to help if necessary. When she saw Buddy this time, she was so impressed by his progress in the past month; she said he was like a totally different baby.
We are so proud of him and how far he has come. I will try to post soon about the Early Steps program plan and all of Buddy's new skills!
Sunday, March 24, 2013
Beeping Easter Eggs and Other Notes
Well, I tried the salmon, and I liked it. We had it for the second time tonight. I broiled it instead of grilling it. The recipe is here if you are looking for a good salmon recipe.
Buddy seems to be seeing more. In the past few days he has shown signs of being able to see a little more in brighter lighting than before. He has also started turning toward us when we talk to him, even if he can't see us when we talk to him from across the room, which is exciting.
On Saturday, the Division of Blind Services paired with the Delta Gamma sorority from UF to have a beeping egg hunt for visually impaired children. Buddy is way too small to hunt for Easter eggs, but we went to see what it was like. Buddy got to pet some bunnies (real ones) and then he fell asleep. We met several other parents of children with disabilities. Comparatively, Buddy seems very blessed. I think that next year, he will be very happy to participate in looking for eggs. I could also see that it would be difficult for someone with low vision to look for eggs, and so the chirping noises the eggs made would help a lot.
We also met a little boy that has albinism. Children with albinism tend to have even more trouble with their vision than children with only ocular albinism, and it was amazing to see how active this little boy was. He was very independent, and participated in all of the activities. He didn't seem to let anything stop him from accomplishing what he set out to do. That was really encouraging to us, and we felt a lot better after meeting him.
Another cool thing we learned on Saturday was from one of the activity tables. Some companies make coloring books with raised outlines for visually impaired children. They are really expensive, and as much as I love Buddy and want him to succeed, I wasn't sure that they were worth the expense (not that he can color yet, anyway). At the egg hunt, they had a craft table, and they had made raised line coloring pages for the kids by taking regular coloring pages and going over the outlines of the images with puff paint. Simple, and cheap. I think Buddy will definitely have some of these. It seems like a tool like that could help any child learn to stay within the lines.
We go to the geneticist on Tuesday. I don't know if they will do the test then, or if they are just going to talk to us about it and make an appointment for the test.
Buddy seems to be seeing more. In the past few days he has shown signs of being able to see a little more in brighter lighting than before. He has also started turning toward us when we talk to him, even if he can't see us when we talk to him from across the room, which is exciting.
On Saturday, the Division of Blind Services paired with the Delta Gamma sorority from UF to have a beeping egg hunt for visually impaired children. Buddy is way too small to hunt for Easter eggs, but we went to see what it was like. Buddy got to pet some bunnies (real ones) and then he fell asleep. We met several other parents of children with disabilities. Comparatively, Buddy seems very blessed. I think that next year, he will be very happy to participate in looking for eggs. I could also see that it would be difficult for someone with low vision to look for eggs, and so the chirping noises the eggs made would help a lot.
We also met a little boy that has albinism. Children with albinism tend to have even more trouble with their vision than children with only ocular albinism, and it was amazing to see how active this little boy was. He was very independent, and participated in all of the activities. He didn't seem to let anything stop him from accomplishing what he set out to do. That was really encouraging to us, and we felt a lot better after meeting him.
Another cool thing we learned on Saturday was from one of the activity tables. Some companies make coloring books with raised outlines for visually impaired children. They are really expensive, and as much as I love Buddy and want him to succeed, I wasn't sure that they were worth the expense (not that he can color yet, anyway). At the egg hunt, they had a craft table, and they had made raised line coloring pages for the kids by taking regular coloring pages and going over the outlines of the images with puff paint. Simple, and cheap. I think Buddy will definitely have some of these. It seems like a tool like that could help any child learn to stay within the lines.
We go to the geneticist on Tuesday. I don't know if they will do the test then, or if they are just going to talk to us about it and make an appointment for the test.
Thursday, March 14, 2013
What Buddy Can See
Having a baby keeps you very busy! We had Buddy's first functional vision assessment 10 days ago. The specialist/interventionist used toys and objects that were bright or shiny and some that made a little bit of noise to catch his attention. She found that he can see and track bright and shiny objects about a foot to a foot and a half from his face, and he only has vision in the upper range. This means that he really only sees objects that are above his nose.
We are very excited that he can see this well. The specialist said that many children with vision problems do not develop their lower vision until they are several years old, but for Buddy, it is still a possibility.
The specialist also brought goggles for my husband and I to try so that we could see what Buddy's vision is like and what it will possibly be like as he develops. I'm glad she did, because I feel better now. I had wondered if it would be like he was looking through a frosted glass window or something, but instead it was just blurry.
We also met with a representative from the Early Steps program. She did a questionnaire with us about Buddy's development so far. Because he does not see us when we are not very close to him, he scored low in the interpersonal skills areas. Hopefully they will be able to work with him on this. The good news is that he interacts with us when we are close to him, and he can hear us even when he can't see us. I talk to him on the phone when I am at work, and he definitely knows it's me! We will go and have a total assessment of Buddy's development on April 4th.
In the meantime, I am trying to incorporate foods into my diet that an eye doctor said might help Buddy's eyes. Unfortunately, the list of foods is: Alaskan Salmon, Kale, Spinach, and Goji berries. I don't really think I like any of the first three things. I had never had goji berries, and I thought, "Berries don't sound so bad..." They are not easy to find, and very expensive. We paid over $13 for two cups of dried goji berries. They ARE sun-dried, certified organic, and vegan. They also have a very interesting flavor, which took some getting used to. I figured I probably needed to find some alternative means for getting these nutrients, so tonight, I will be trying salmon. It is currently marinating in brown sugar and soy sauce, waiting for the Buddy daddy to get home from work. I have also been looking at recipes to find ways to use the very large bag of kale that I have in my refrigerator.
Talk to you soon!
We are very excited that he can see this well. The specialist said that many children with vision problems do not develop their lower vision until they are several years old, but for Buddy, it is still a possibility.
The specialist also brought goggles for my husband and I to try so that we could see what Buddy's vision is like and what it will possibly be like as he develops. I'm glad she did, because I feel better now. I had wondered if it would be like he was looking through a frosted glass window or something, but instead it was just blurry.
We also met with a representative from the Early Steps program. She did a questionnaire with us about Buddy's development so far. Because he does not see us when we are not very close to him, he scored low in the interpersonal skills areas. Hopefully they will be able to work with him on this. The good news is that he interacts with us when we are close to him, and he can hear us even when he can't see us. I talk to him on the phone when I am at work, and he definitely knows it's me! We will go and have a total assessment of Buddy's development on April 4th.
In the meantime, I am trying to incorporate foods into my diet that an eye doctor said might help Buddy's eyes. Unfortunately, the list of foods is: Alaskan Salmon, Kale, Spinach, and Goji berries. I don't really think I like any of the first three things. I had never had goji berries, and I thought, "Berries don't sound so bad..." They are not easy to find, and very expensive. We paid over $13 for two cups of dried goji berries. They ARE sun-dried, certified organic, and vegan. They also have a very interesting flavor, which took some getting used to. I figured I probably needed to find some alternative means for getting these nutrients, so tonight, I will be trying salmon. It is currently marinating in brown sugar and soy sauce, waiting for the Buddy daddy to get home from work. I have also been looking at recipes to find ways to use the very large bag of kale that I have in my refrigerator.
Talk to you soon!
Wednesday, February 27, 2013
Dim the Lights
Since our meeting Monday night, we have been using dimmer lights at home, and arranging Buddy so the lights are behind him, shining on us. The difference has been amazing. It is obvious that he CAN see us, and he responds by smiling at us when he looks at our faces.
People with OA have trouble with glare, which we knew, but we didn't realize that our lights were so bright that they were "blinding" him. I kept thinking that if he had trouble seeing, he needed more light, but in his case, just the opposite is true. The house is a little dark for my taste, but if it helps Buddy see better, I will definitely do it. We have been so excited to see his progress since we made the change.
People with OA have trouble with glare, which we knew, but we didn't realize that our lights were so bright that they were "blinding" him. I kept thinking that if he had trouble seeing, he needed more light, but in his case, just the opposite is true. The house is a little dark for my taste, but if it helps Buddy see better, I will definitely do it. We have been so excited to see his progress since we made the change.
Monday, February 25, 2013
First Visit
We had our first visit with a representative from the Florida school for the Deaf and the Blind. She was incredibly positive and encouraging. She said several times that Buddy will be able to do tons of things, and that his sight will improve over the next several months and years. Also, she said not to rule out anything at this point, because he will surprise us with all of his accomplishments. She went over the program and filled out a lot of paperwork. She will come back next Monday to perform an evaluation of his vision. In the meantime, we have homework.
We will be playing with Buddy with a flashlight to see what he is interested in.
We learned several things tonight. One, Buddy will be a lot more sensitive than we are to bright lights, so while he enjoys looking at them, he can see the things around him a lot better in dim light. So we will be using a lot fewer lights from now on. Also, we got him a great little night light that projects a picture that we will put in his Easter basket, and she said that will probably be great for him. I am looking forward to giving it to him.
Two, faces have very little contrast, so they are very hard for people with low vision to see. This means that Buddy does not look at us so much because the features on our faces are difficult to distinguish.
Three, a normal child's vision does not completely develop until they are 5-6 years old. So, Buddy's vision will continue to improve for awhile, and we can see just how much he can do!
There are also upcoming events that we can think about going to. On Saturday, there is an information fair, and later in March, there will be an Easter egg hunt. They have eggs that beep and chirp so that blind and visually impaired children can find them. Obviously, Buddy is too young to hunt for Easter eggs, but it might be nice to meet some other families.
I'll let you know how the flashlight games go.
We will be playing with Buddy with a flashlight to see what he is interested in.
We learned several things tonight. One, Buddy will be a lot more sensitive than we are to bright lights, so while he enjoys looking at them, he can see the things around him a lot better in dim light. So we will be using a lot fewer lights from now on. Also, we got him a great little night light that projects a picture that we will put in his Easter basket, and she said that will probably be great for him. I am looking forward to giving it to him.
Two, faces have very little contrast, so they are very hard for people with low vision to see. This means that Buddy does not look at us so much because the features on our faces are difficult to distinguish.
Three, a normal child's vision does not completely develop until they are 5-6 years old. So, Buddy's vision will continue to improve for awhile, and we can see just how much he can do!
There are also upcoming events that we can think about going to. On Saturday, there is an information fair, and later in March, there will be an Easter egg hunt. They have eggs that beep and chirp so that blind and visually impaired children can find them. Obviously, Buddy is too young to hunt for Easter eggs, but it might be nice to meet some other families.
I'll let you know how the flashlight games go.
Saturday, February 23, 2013
Upcoming Appointments
We will meet with someone from the Florida Deaf and Blind school on Monday to discuss an in-home program for Buddy. (I already mentioned this one.)
On the Monday after that, someone from the Early Steps program at UF will be coming to meet us. Everyone sounds so positive and enthusiastic. I'm excited to find out what we can do to help Buddy the most.
I would like to say at this point that I am extremely grateful for all of the help that has been made available to us, and this post is not meant to be disrespectful to these people in any way, but the next part just struck me as so funny that I had to write about it--plus, you can hear more about Buddy.
I think the questionnaire they sent us to fill out before the visit is rather humorous. It was very obviously intended for a much older child. I'm glad for the fact that we found out early, so that Buddy can get as much help as possible. Just for fun, here's the list of questions:
Favorite and least favorite:
When is your child most/least cooperative?
What frightens/calms your child?
How does your child assist/participate in the following daily routines?
What do you do to help your child learn?
What concerns do you have for your child?
I suppose these questions are reasonable, but they just don't really apply to Buddy.
So, um, he likes having soft things rubbed on his face, and his favorite toy/object is a burp cloth. This is also part of the answer to what calms him. If rubbing something soft on his face doesn't work, he likes listening to "Crazy Train," or really anything featuring Ozzie. I know. I'm disturbed by this, too.
If he doesn't like something, he cries. If he does like something, he smiles. Nothing really frightens him, and he's always cooperative unless he's hungry. He likes everyone he's met, and he doesn't help with daily routines unless you count swallowing milk placed in his mouth for him or kicking his feet and sucking on his fingers/forearms while you try to dress him. You know, typical baby behavior. Obviously, our concern is that he will not be able to see well enough to participate in daily activities, or the activities that my husband and I enjoy so much.
So, because I am a cooperative person, and because I think these questions are so humorously inappropriate for Buddy's age, I will fill out the questionnaire. The woman I spoke with on the phone suggested that he had "cognitive developmental delays due to visual impairment." It was at this point that I told her that he was only 3 months old and I wasn't really sure how his cognition was delayed, so I know that they are aware of his age. I guess many children are not diagnosed with visual impairment until they are much older, which makes me glad that we can start getting help early.
I'll let you know what we learn Monday night. Thanks for reading!
On the Monday after that, someone from the Early Steps program at UF will be coming to meet us. Everyone sounds so positive and enthusiastic. I'm excited to find out what we can do to help Buddy the most.
I would like to say at this point that I am extremely grateful for all of the help that has been made available to us, and this post is not meant to be disrespectful to these people in any way, but the next part just struck me as so funny that I had to write about it--plus, you can hear more about Buddy.
I think the questionnaire they sent us to fill out before the visit is rather humorous. It was very obviously intended for a much older child. I'm glad for the fact that we found out early, so that Buddy can get as much help as possible. Just for fun, here's the list of questions:
Favorite and least favorite:
- Activities and games
- Toys and objects
- Foods and eating
- People and playmates
When is your child most/least cooperative?
What frightens/calms your child?
How does your child assist/participate in the following daily routines?
- Feeding
- Dressing
- Toileting
- Bathing
What do you do to help your child learn?
What concerns do you have for your child?
I suppose these questions are reasonable, but they just don't really apply to Buddy.
So, um, he likes having soft things rubbed on his face, and his favorite toy/object is a burp cloth. This is also part of the answer to what calms him. If rubbing something soft on his face doesn't work, he likes listening to "Crazy Train," or really anything featuring Ozzie. I know. I'm disturbed by this, too.
If he doesn't like something, he cries. If he does like something, he smiles. Nothing really frightens him, and he's always cooperative unless he's hungry. He likes everyone he's met, and he doesn't help with daily routines unless you count swallowing milk placed in his mouth for him or kicking his feet and sucking on his fingers/forearms while you try to dress him. You know, typical baby behavior. Obviously, our concern is that he will not be able to see well enough to participate in daily activities, or the activities that my husband and I enjoy so much.
So, because I am a cooperative person, and because I think these questions are so humorously inappropriate for Buddy's age, I will fill out the questionnaire. The woman I spoke with on the phone suggested that he had "cognitive developmental delays due to visual impairment." It was at this point that I told her that he was only 3 months old and I wasn't really sure how his cognition was delayed, so I know that they are aware of his age. I guess many children are not diagnosed with visual impairment until they are much older, which makes me glad that we can start getting help early.
I'll let you know what we learn Monday night. Thanks for reading!
Monday, February 18, 2013
Good News!
I got phone calls from an early intervention program for the visually impaired and someone who provides in home support for the visually impaired from the Florida School for the Deaf and Blind.
We'll meet with someone on Monday night. I am so excited to find out what we can do to help Buddy! I'll let you know what happens!
We'll meet with someone on Monday night. I am so excited to find out what we can do to help Buddy! I'll let you know what happens!
Sunday, February 17, 2013
A Campfire
Buddy had his first campfire last night. Even though it's Florida and has been in the 80's lately, we are having a freeze this weekend. Yesterday, we were trying to work on the house, and suddenly my husband decided that we needed to fix the drafty front door and have a campfire. We talked about our options. We live in Florida, in a 67 year old house. The front door is a frame around a jalousie window. I'm sure when it was put in, before air-conditioning, it was fantastic. Now, we can't open it when the weather is nice, and it just lets in a draft. We decided to replace the window screen with visqueen and to dig a fire pit. Random, I know. So anyway, my husband went to the hardware store to buy some visqueen and a shovel. I went to the store for hotdog buns and s'mores supplies.
So anyway, my husband dug a fire pit, and my sister and brother-in-law came over. When I first brought Buddy outside, he just stared at the light on the back porch. I turned him so he was looking at the fire. He seemed to like that, too. He watched it for the rest of the time we were outside. We finally had to go back in because of the cold, but it was fun.
We have been planning for so long for all the fun things we can do with Buddy. Then, we wondered, how can he do all the things that we love doing if he can't really see very well? We like hiking, and photography, and my husband likes cars and target shooting. After realizing that these may not be possible things for us to all enjoy, we decided to come up with new interests for all of us. Still, it is nice to be able to do "normal" stuff like have a campfire, and have Buddy enjoy it. We can't wait to do more things with him!
So anyway, my husband dug a fire pit, and my sister and brother-in-law came over. When I first brought Buddy outside, he just stared at the light on the back porch. I turned him so he was looking at the fire. He seemed to like that, too. He watched it for the rest of the time we were outside. We finally had to go back in because of the cold, but it was fun.
We have been planning for so long for all the fun things we can do with Buddy. Then, we wondered, how can he do all the things that we love doing if he can't really see very well? We like hiking, and photography, and my husband likes cars and target shooting. After realizing that these may not be possible things for us to all enjoy, we decided to come up with new interests for all of us. Still, it is nice to be able to do "normal" stuff like have a campfire, and have Buddy enjoy it. We can't wait to do more things with him!
Friday, February 15, 2013
Others
The reaction of others is an aspect of this that is comforting and distressing, depending on which "others" are reacting.
I have been amazed by the people that started researching right away and want to help us as much as possible. One of the professors that I work with said, "There has to be something that can help this. I will start researching this." I really appreciated the call I got in the middle of my workday from a friend letting me know she had heard about Buddy and was there if I needed anything. I appreciated my boss taking the time to list all of the sports she could think of that don't involve a ball that Buddy could participate in when he gets older.
It is frustrating when people assume we are devastated or depressed about this, and treat us like they are trying to cheer us up. The first two days were scary and we cried, but we are pretty much over it now. Also, we have read a lot about kids with ocular albinism, and they seem to be able to do lots of things, so we are hopeful for Buddy. It is also frustrating when people say, "Well, he can just get glasses." From what I have read, glasses won't help Buddy see any better.
I think the worst thing so far was walking through Walmart last weekend. A woman stopped us to see Buddy (which we are used to), and said, "What a beautiful baby. Is there something wrong with his eyes?" She had a child-like innocence, and I truly think she did not mean to be rude or hurtful, but it was difficult to politely tell her about Buddy's probable ocular albinism. It is very hard to think that we will have to hear things like that for the rest of Buddy's life. He is so wonderful and happy. I don't really notice his nystagmus, but I guess other people will.
I hope that people will react with kindness and love Buddy as much as I do.
I have been amazed by the people that started researching right away and want to help us as much as possible. One of the professors that I work with said, "There has to be something that can help this. I will start researching this." I really appreciated the call I got in the middle of my workday from a friend letting me know she had heard about Buddy and was there if I needed anything. I appreciated my boss taking the time to list all of the sports she could think of that don't involve a ball that Buddy could participate in when he gets older.
It is frustrating when people assume we are devastated or depressed about this, and treat us like they are trying to cheer us up. The first two days were scary and we cried, but we are pretty much over it now. Also, we have read a lot about kids with ocular albinism, and they seem to be able to do lots of things, so we are hopeful for Buddy. It is also frustrating when people say, "Well, he can just get glasses." From what I have read, glasses won't help Buddy see any better.
I think the worst thing so far was walking through Walmart last weekend. A woman stopped us to see Buddy (which we are used to), and said, "What a beautiful baby. Is there something wrong with his eyes?" She had a child-like innocence, and I truly think she did not mean to be rude or hurtful, but it was difficult to politely tell her about Buddy's probable ocular albinism. It is very hard to think that we will have to hear things like that for the rest of Buddy's life. He is so wonderful and happy. I don't really notice his nystagmus, but I guess other people will.
I hope that people will react with kindness and love Buddy as much as I do.
Wednesday, February 13, 2013
Encouragement
"Since it is so likely that children will meet cruel enemies, let them at least have heard of brave knights and heroic courage. Otherwise,you are making their destiny not brighter, but darker." --C.S. Lewis
I read this last night. This is something I can do. Buddy will have tons of examples of courage. I cannot keep people from being cruel, but I can show him how to show mercy and love to others.
I am sad that his eyes are not perfect, but I also realize that he has no idea that there is anything wrong. He is already so sweet, and I can only imagine that he will become a very compassionate person because of this.
I am so excited to see what great things he accomplishes!
I read this last night. This is something I can do. Buddy will have tons of examples of courage. I cannot keep people from being cruel, but I can show him how to show mercy and love to others.
I am sad that his eyes are not perfect, but I also realize that he has no idea that there is anything wrong. He is already so sweet, and I can only imagine that he will become a very compassionate person because of this.
I am so excited to see what great things he accomplishes!
Tuesday, February 12, 2013
News
I got a call at work today. It was a really inconvenient time, as there were tons of people in line at my desk that I was supposed to be helping, but I took the call anyway. It was someone from the office that will do Buddy's genetic study to find out if he truly does have ocular albinism. The eye-doctor said it would take six months to get an appointment, but we are actually going at the end of March. I am so excited that we don't have to sit here waiting for so long. Going won't change anything, except that we will know one way or the other. Also, it occurred to me that if Buddy doesn't have ocular albinism, then we need to find out what is causing his symptoms, so I think this appointment is really important.
In other news, Buddy can see the mobile over his crib. The mobile has little animals with lights in them, like paper lanterns, but made of plastic. We knew he liked the mobile, but it plays music, and so that may have been what he was enjoying. This morning when I left for work, I had to put him down in the crib, and it was still pretty dark. My husband was unsure that Buddy could see the animals and lights from a distance. When I laid Buddy down, I turned on his mobile, but it was set to music only. I switched the lights on, and he immediately reacted--tipping his head back so that he could see the lights better. I was so excited!
In other news, Buddy can see the mobile over his crib. The mobile has little animals with lights in them, like paper lanterns, but made of plastic. We knew he liked the mobile, but it plays music, and so that may have been what he was enjoying. This morning when I left for work, I had to put him down in the crib, and it was still pretty dark. My husband was unsure that Buddy could see the animals and lights from a distance. When I laid Buddy down, I turned on his mobile, but it was set to music only. I switched the lights on, and he immediately reacted--tipping his head back so that he could see the lights better. I was so excited!
Sunday, February 10, 2013
Sight
Buddy can see. We've known that for awhile. The eye doctor agrees with us. It is just a question of how well he can see what he sees.
It's heartbreaking to watch him trying to look at something and obviously have such a hard time with it. It's also exciting when we "catch" him seeing something, like the other night when I bent over him in his cradle. My husband was watching him and saw Buddy react. He totally saw me coming!
He looked at us for the first time ever the week after he turned two months old. Those moments are such sweet memories, and we long to have more like them, but we will take them as they come, when Buddy is ready.
Mostly it seems like he is just not interested in looking at things. I don't know that it is really a lack of interest, I think it is more lack of awareness. We try putting things in front of him, but he doesn't really notice them about half of the time. Instead, we try to focus on what he enjoys. He likes crinkly noises, and touching soft things. He loves any type of soft fabric, and if you give him something, he tries to rub it on his face. He has soft fabric toys, but he seems to like blankets and burp cloths best. He also likes looking at lights, so Christmastime was a lot of fun.
The eye doctor is supposed to refer us to the Division of Blind Services, which helps visually impaired people as well as people who are blind. She said they would call us, and so I have been waiting rather impatiently for them to call. They are supposed to be able to help Buddy effectively use the sight that he has, and I am ready to start. I'll let you know what they say.
It's heartbreaking to watch him trying to look at something and obviously have such a hard time with it. It's also exciting when we "catch" him seeing something, like the other night when I bent over him in his cradle. My husband was watching him and saw Buddy react. He totally saw me coming!
He looked at us for the first time ever the week after he turned two months old. Those moments are such sweet memories, and we long to have more like them, but we will take them as they come, when Buddy is ready.
Mostly it seems like he is just not interested in looking at things. I don't know that it is really a lack of interest, I think it is more lack of awareness. We try putting things in front of him, but he doesn't really notice them about half of the time. Instead, we try to focus on what he enjoys. He likes crinkly noises, and touching soft things. He loves any type of soft fabric, and if you give him something, he tries to rub it on his face. He has soft fabric toys, but he seems to like blankets and burp cloths best. He also likes looking at lights, so Christmastime was a lot of fun.
The eye doctor is supposed to refer us to the Division of Blind Services, which helps visually impaired people as well as people who are blind. She said they would call us, and so I have been waiting rather impatiently for them to call. They are supposed to be able to help Buddy effectively use the sight that he has, and I am ready to start. I'll let you know what they say.
Saturday, February 9, 2013
It's No Big Deal
At our Buddy's two month check-up, the pediatrician was concerned about his eyes. They moved constantly. We had noticed this, but as Buddy is our first, we just thought he would learn to look at things later. She sent us to a pediatric ophthalmologist (which I apparently did not even know how to spell before writing this). We had to wait a month to get in. The whole time, we just thought they would give him glasses, or some eye-strengthening exercises. We knew he could see, just maybe not as well as others. It would be NO BIG DEAL.
We were wrong. The ophthalmologist was really nice, and good at working with an uncooperative baby. Actually, Buddy wasn't really being difficult, but his eye condition makes it hard to examine him. After she was done, she said he was nearsighted, but not enough to need glasses at his age. Then, she showed us a picture of a typical retina, and explained how Buddy's was different. Instead of pinkish red with a red spot in the middle, his are yellowish with no red spot. This indicates ocular albinism. He also has nystagmus (uncontrollable eye movement) and foveal hypoplasia (I still don't know what that is). She said the only way to know for sure if he has ocular albinism is to go for genetic testing, and it will take 6 months to get an appointment.
We didn't really know what all of this meant, and so the full impact didn't hit until later. My husband went home and started reading immediately. That was scary, but informative. At first, all we saw was all the stuff that he would have trouble with. We cried. A lot. Because it is a BIG DEAL.
It was also really upsetting to find out that this is a genetic problem, usually passed from mothers to sons, which means, if Buddy really does have ocular albinism, he got it from me. I realize that there is nothing I can do about this, and it isn't really my fault, but hearing this for the first time really hurt. From our research, we have learned that the mothers usually do not display the traits of the disorder, but I do actually have trouble with depth perception, which is one of the symptoms of OA.
I started reading some discussion boards and blogs last night and today, and tons of mothers have commented on how much their kids have accomplished, and that has made us feel better. So, now we wait to see how much of a DEAL this is.
We were wrong. The ophthalmologist was really nice, and good at working with an uncooperative baby. Actually, Buddy wasn't really being difficult, but his eye condition makes it hard to examine him. After she was done, she said he was nearsighted, but not enough to need glasses at his age. Then, she showed us a picture of a typical retina, and explained how Buddy's was different. Instead of pinkish red with a red spot in the middle, his are yellowish with no red spot. This indicates ocular albinism. He also has nystagmus (uncontrollable eye movement) and foveal hypoplasia (I still don't know what that is). She said the only way to know for sure if he has ocular albinism is to go for genetic testing, and it will take 6 months to get an appointment.
We didn't really know what all of this meant, and so the full impact didn't hit until later. My husband went home and started reading immediately. That was scary, but informative. At first, all we saw was all the stuff that he would have trouble with. We cried. A lot. Because it is a BIG DEAL.
It was also really upsetting to find out that this is a genetic problem, usually passed from mothers to sons, which means, if Buddy really does have ocular albinism, he got it from me. I realize that there is nothing I can do about this, and it isn't really my fault, but hearing this for the first time really hurt. From our research, we have learned that the mothers usually do not display the traits of the disorder, but I do actually have trouble with depth perception, which is one of the symptoms of OA.
I started reading some discussion boards and blogs last night and today, and tons of mothers have commented on how much their kids have accomplished, and that has made us feel better. So, now we wait to see how much of a DEAL this is.
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