Sunday, September 29, 2013

Good News and Resources

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.

Monday, September 16, 2013


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!

Monday, July 29, 2013


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!

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.

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. 

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!

Sunday, April 14, 2013


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!