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!

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. 

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.

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.

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!

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 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.