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!
Sunday, April 14, 2013
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!
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