We have a date--January 12th.
We will start putting eyedrops (anti-inflammatory and antibiotic) in Daniel's eyes several days before the surgery. On the night before, we will drive up to the city where the surgery will take place and spend the night in a motel. Daniel cannot eat or drink anything after midnight. We are due at the hospital at 6:30 AM. The doctor will likely give Daniel something through an IV to make him mellow, and then give him a light general anesthesia. While he is under anesthesia, his nystagmus (small, jerky, involuntary eye movements) will stop, so the doctor will take some final measurements of his eyes to make sure the lens implant is matched to his good eye as accurately as possible. (Both the doctor doing his surgery and the doctor who will be fitting him with contacts in the future feel that it will be best to have his eyes as similar as possible, so that they won't have vastly different scripts.) Then the surgery will take place. The doctor only expects the surgery to take about twenty minutes. Afterwards they will send Daniel to recovery and monitor him for a while to make sure he isn't reacting badly to the anesthesia. We can expect to be out of there by noon. However, the surgeon will see Daniel again in the same location the following day, so between that bit of scheduling and the possibility that Daniel might not be feeling like a long car ride on top of everything else, we will spend that night in a motel as well. If Daniel feels up to it, there are a lot of fun things that we can do in the city that afternoon, especially a children's science museum that I have been looking forward to taking him to.
Daniel will need to patch his eye overnight the first night, use eyedrops for a couple of weeks, and avoid heavy lifting and gym class for a couple of weeks. And then the surgery will be over, as far as he is concerned! I gather that it takes about ten weeks for the eye to heal and adjust completely. So in April or so we can start thinking about the next step: tinted contacts!
Wednesday, November 30, 2011
Sunday, November 27, 2011
sentences
Daniel's English has made another jump forward. We are hearing more and more sentences out of him, like the following just now as we put him to bed:
My feet smelly no good, Daddy no like, yes-no?
Which translates to, "Daddy doesn't like the way my feet smell, right?" (He had some foot lotion on them, and Tim indeed does not like the smell of that lotion.)
He also was sitting on a heater at church last week and announced to the college-age girl I had just been talking with, "My. Bottom. Hot!" To which she calmly replied, "Of course it's hot, you're sitting on the heater."
Oh yes, and he wanted to tell me that he had put a wallet on my bed, but didn't know the word, so he called it a "money backpack."
In other news, I have finally finished the writing project that has been occupying my (abundant--not!) writing time over the past several weeks, so I may be able to get back to blogging again! Stay tuned...
My feet smelly no good, Daddy no like, yes-no?
Which translates to, "Daddy doesn't like the way my feet smell, right?" (He had some foot lotion on them, and Tim indeed does not like the smell of that lotion.)
He also was sitting on a heater at church last week and announced to the college-age girl I had just been talking with, "My. Bottom. Hot!" To which she calmly replied, "Of course it's hot, you're sitting on the heater."
Oh yes, and he wanted to tell me that he had put a wallet on my bed, but didn't know the word, so he called it a "money backpack."
In other news, I have finally finished the writing project that has been occupying my (abundant--not!) writing time over the past several weeks, so I may be able to get back to blogging again! Stay tuned...
Tuesday, November 8, 2011
cataract surgery
The title of this post is a little misleading, because we don't have the date yet. But we did have our appointment with the ophthalmologist we were referred to today. We picked up Daniel from school shortly before lunch, rushed him home to scarf down some leftovers (that he didn't particularly like), drove over to Tim's work and dropped Esther off at her daycare, and headed on up to the larger city north of us where the ophthalmologist has one of his satellite offices. We had gotten paperwork from them ahead of time which said to allow at least two hours for a first visit. I thought that sounded like a lot, but--we were there for just over two hours! It was a very good call not to bring Esther, especially since the waiting room was not child-friendly.
We had gotten some information mailed to us after Daniel's first eye evaluation. I have put in some time over two days looking for it so that I could write the name of our referring doctor on our form (with all the information I had been trying to absorb at our last appointment, I had completely forgotten her name; rather embarrassing!). I never did find it, so went without it, recalling that the people from the eye evaluation had said they would mail the information on to this ophthalmologist. Well, they hadn't. Actually I don't think his doctor needed it today, but I had been stressing about the appointment all morning and not being able to produce such an important piece of paper when they asked me about it made me feel rotten. Like, what kind of mother just loses her child's important medical information?? (I know, I know, I'm not the only one out there!) So the appointment did not get off to an auspicious start.
Meanwhile, Daniel is not a big fan of medical appointments and can be rather stressful to wait with. So I asked the receptionist how long she thought it might be until we were called, and she thought 20-30 minutes. Daniel has been wanting me to help him stop biting his fingernails and toenails (did I ever mention how flexible he is?), and has been very interested in buying something bitter to paint on his nails. I remembered passing a pharmacy on the way in to the clinic, so asked Tim if he would be up for taking Daniel to the store to look for fingernail stuff rather than waiting in the waiting room. Tim graciously agreed, and they managed to not only get the fingernail stuff but fill the car up with gas and still get back a few minutes before Daniel was called. By that time Daniel and I were both in a somewhat more peaceful frame of mind, and the actual appointment went fine.
First, we were led to a room where Daniel was examined by...a physician's assistant? I have no idea what her job description was; she was competent but clearly junior to the doctor. Anyway, she went through many of the same tests we had done a few weeks ago to determine his visual acuity. She did do a few tests of his field of vision (i.e. how much peripheral vision he has) that I don't recall them doing last time. (And by the way...how in the world do parents of older internationally adopted children do medical appointments when they don't speak the child's language? I was challenged enough conveying directions verbally; I can't imagine having had to do that through a translator or through pantomime! I guess most kids know more English by this time out than Daniel does.) Once that set of tests were over, we waited for a few minutes. Daniel did a pretty good job keeping his hands to himself while waiting--he has gotten so much better at this!--but I did at one point threaten to call Tim in to keep him in line. Daniel decided he liked that idea, so he went and got Tim, and we were just settling in for a long wait when the ophthalmologist himself arrived. Tim and I both liked him, and he interacted really well with Daniel. He did some more tests which mostly involved shining lights in Daniel's eyes. Then he put drops in Daniel's eyes to dilate them and told us he would call us back in after half an hour.
So Daniel and I went out to the car for half an hour and kept ourselves entertained by painting the no-bite nail stuff on Daniel's fingernails and toenails, and by eating potato chips. Tim stayed in the waiting room and did some work, while keeping one ear out in case they called our name early. As it happened, we waited nearly another half an hour after coming back inside. But Daniel flipped through a couple of magazines and talked to me and was pretty agreeable, so that was fine. (Back in July it would have been misery!) Then we were called back again, and the doctor shone some more lights in Daniel's eyes. Poor Daniel hates having his eyes dilated, and of course hates having lights shined in them while they are dilated, but he cooperated.
Then we got to hear about cataract surgery.
First off, the doctor shared that Daniel's type of cataract is not a typical cataract. A typical cataract forms on the lens of the eye, and cataract surgery involves removing the lens and implanting an artificial lens in the same place. I'm kicking myself for not asking the doctor more specifically the names of the parts of the eye that he was talking about, but basically, Daniel's cataract is attached not only to his lens but also to the part of the eye that rings the lens. The cataract may detach easily from this structure--the doctor has experienced that before--in which case the surgery will proceed just as with a normal cataract. But if the cataract does not detach easily, then the lens capsule may rupture, and the doctor will have to implant the artificial lens in front of where it would normally go rather than in its current location. Apparently that is not a huge deal medically, but the best case scenario would still have Daniel's implant going in the same place as his natural lens. The type of cataract that Daniel has, while not typical, is not uncommon in people with albinism. Tim and I both think the doctor said something about the extra glare experienced by people with albinism (because their irises are not pigmented enough to block all light) contributing to the formation of this type of cataract, but we have no idea how that works. However, apparently Daniel is at no more risk than anyone else for developing a cataract in his other eye.
I did a little research before this ophthalmologist visit, and discovered that there is more than one kind of implantable lens. Some really high-end implants are supposed to be able to focus, but most can only focus at one distance, and so you have to decide before the surgery which distance you most want to be able to see clearly at. I gather that it is common to choose a lens which gives the wearer clear distance vision, and then they can use reading glasses (or their good eye, if they have one) to focus close up. But because Daniel's eye is not capable of clear distance vision no matter what kind of lens is in, and because he does discriminate quite well close up, the doctor suggested that he choose an implant with a focal point that lets it work well at a similar distance to Daniel's right eye--that is, quite close up. I had already thought about this issue and reached the same conclusion, so I was very happy to agree with that reasoning. Daniel is already in the habit of using just his right eye, sometimes with a magnification device, to see things at a distance, so I think a nearsighted lens in his left eye will get much more use than a farsighted one would.
Finally, there was the matter of the surgery itself. The doctor wants to put Daniel under general anesthesia for the procedure. He is not sure of Daniel being able to hold still enough if the procedure is uncomfortable, due to his age, but even more importantly, Daniel is incapable of consciously halting his nystagmus (small, involuntary back-and-forth movements of his eyes). And with the operation being potentially even more delicate than usual, it is vital that his eyes be still. So, we will be going to the city of this doctor's main office for the surgery. Even though it is general anesthesia, it will be "light" anesthesia, which means we should only be a few hours in the hospital. However, the hospital is a good hour and a half drive away from us, and Daniel will be scheduled at 7:30 AM, so we get to choose between making an hour and a half drive during a time when we would normally be sleeping, or staying in a hotel the night before. And then we get to make a similar choice about the night after, because Daniel will need to be seen the next morning to make sure everything is going smoothly. We also have to have a pre-surgery visit at some point to let the doctor get some more measurements on Daniel's eyes and to discuss plans with the surgery coordinator, at which point we will choose a surgery date. We can probably take care of that pre-visit while on our way to Grandma's house for Thanksgiving, since we will be driving through that city anyway. The doctor said that due to Daniel's age, removing the cataract is not urgent; that is, having it there is not going to change the way Daniel's brain processes visual input, it is just going to mean he has less visual input than he might otherwise. However, we will probably try to get it out in January before Tim goes back to work, so that we can move on to the business of fitting tinted contact lenses. Daniel will only need to miss a couple of days of school, which he will be disappointed about. :-P He should not be in pain after the surgery, and recovery will mostly involve remembering to use several different kinds of eyedrops and making sure that he doesn't pick up anything heavy (like his little sister!) for several weeks.
After our appointment was over, we stopped by McDonald's before heading back to pick up Esther. Daniel was very hungry by that time, and enjoyed the treat of a hamburger and french fries and soda. I told him what the doctor had told me about how the surgery would work. He was interested and positive, although dubious that he could go to sleep unless they gave him a comforter to sleep under. (I had described anesthesia as "they will give you medicine that will make you sleep and not wake up when they are taking that thing out of your eye.") I sure hope he's happy with how his eye works after the surgery is over!!
We had gotten some information mailed to us after Daniel's first eye evaluation. I have put in some time over two days looking for it so that I could write the name of our referring doctor on our form (with all the information I had been trying to absorb at our last appointment, I had completely forgotten her name; rather embarrassing!). I never did find it, so went without it, recalling that the people from the eye evaluation had said they would mail the information on to this ophthalmologist. Well, they hadn't. Actually I don't think his doctor needed it today, but I had been stressing about the appointment all morning and not being able to produce such an important piece of paper when they asked me about it made me feel rotten. Like, what kind of mother just loses her child's important medical information?? (I know, I know, I'm not the only one out there!) So the appointment did not get off to an auspicious start.
Meanwhile, Daniel is not a big fan of medical appointments and can be rather stressful to wait with. So I asked the receptionist how long she thought it might be until we were called, and she thought 20-30 minutes. Daniel has been wanting me to help him stop biting his fingernails and toenails (did I ever mention how flexible he is?), and has been very interested in buying something bitter to paint on his nails. I remembered passing a pharmacy on the way in to the clinic, so asked Tim if he would be up for taking Daniel to the store to look for fingernail stuff rather than waiting in the waiting room. Tim graciously agreed, and they managed to not only get the fingernail stuff but fill the car up with gas and still get back a few minutes before Daniel was called. By that time Daniel and I were both in a somewhat more peaceful frame of mind, and the actual appointment went fine.
First, we were led to a room where Daniel was examined by...a physician's assistant? I have no idea what her job description was; she was competent but clearly junior to the doctor. Anyway, she went through many of the same tests we had done a few weeks ago to determine his visual acuity. She did do a few tests of his field of vision (i.e. how much peripheral vision he has) that I don't recall them doing last time. (And by the way...how in the world do parents of older internationally adopted children do medical appointments when they don't speak the child's language? I was challenged enough conveying directions verbally; I can't imagine having had to do that through a translator or through pantomime! I guess most kids know more English by this time out than Daniel does.) Once that set of tests were over, we waited for a few minutes. Daniel did a pretty good job keeping his hands to himself while waiting--he has gotten so much better at this!--but I did at one point threaten to call Tim in to keep him in line. Daniel decided he liked that idea, so he went and got Tim, and we were just settling in for a long wait when the ophthalmologist himself arrived. Tim and I both liked him, and he interacted really well with Daniel. He did some more tests which mostly involved shining lights in Daniel's eyes. Then he put drops in Daniel's eyes to dilate them and told us he would call us back in after half an hour.
So Daniel and I went out to the car for half an hour and kept ourselves entertained by painting the no-bite nail stuff on Daniel's fingernails and toenails, and by eating potato chips. Tim stayed in the waiting room and did some work, while keeping one ear out in case they called our name early. As it happened, we waited nearly another half an hour after coming back inside. But Daniel flipped through a couple of magazines and talked to me and was pretty agreeable, so that was fine. (Back in July it would have been misery!) Then we were called back again, and the doctor shone some more lights in Daniel's eyes. Poor Daniel hates having his eyes dilated, and of course hates having lights shined in them while they are dilated, but he cooperated.
Then we got to hear about cataract surgery.
First off, the doctor shared that Daniel's type of cataract is not a typical cataract. A typical cataract forms on the lens of the eye, and cataract surgery involves removing the lens and implanting an artificial lens in the same place. I'm kicking myself for not asking the doctor more specifically the names of the parts of the eye that he was talking about, but basically, Daniel's cataract is attached not only to his lens but also to the part of the eye that rings the lens. The cataract may detach easily from this structure--the doctor has experienced that before--in which case the surgery will proceed just as with a normal cataract. But if the cataract does not detach easily, then the lens capsule may rupture, and the doctor will have to implant the artificial lens in front of where it would normally go rather than in its current location. Apparently that is not a huge deal medically, but the best case scenario would still have Daniel's implant going in the same place as his natural lens. The type of cataract that Daniel has, while not typical, is not uncommon in people with albinism. Tim and I both think the doctor said something about the extra glare experienced by people with albinism (because their irises are not pigmented enough to block all light) contributing to the formation of this type of cataract, but we have no idea how that works. However, apparently Daniel is at no more risk than anyone else for developing a cataract in his other eye.
I did a little research before this ophthalmologist visit, and discovered that there is more than one kind of implantable lens. Some really high-end implants are supposed to be able to focus, but most can only focus at one distance, and so you have to decide before the surgery which distance you most want to be able to see clearly at. I gather that it is common to choose a lens which gives the wearer clear distance vision, and then they can use reading glasses (or their good eye, if they have one) to focus close up. But because Daniel's eye is not capable of clear distance vision no matter what kind of lens is in, and because he does discriminate quite well close up, the doctor suggested that he choose an implant with a focal point that lets it work well at a similar distance to Daniel's right eye--that is, quite close up. I had already thought about this issue and reached the same conclusion, so I was very happy to agree with that reasoning. Daniel is already in the habit of using just his right eye, sometimes with a magnification device, to see things at a distance, so I think a nearsighted lens in his left eye will get much more use than a farsighted one would.
Finally, there was the matter of the surgery itself. The doctor wants to put Daniel under general anesthesia for the procedure. He is not sure of Daniel being able to hold still enough if the procedure is uncomfortable, due to his age, but even more importantly, Daniel is incapable of consciously halting his nystagmus (small, involuntary back-and-forth movements of his eyes). And with the operation being potentially even more delicate than usual, it is vital that his eyes be still. So, we will be going to the city of this doctor's main office for the surgery. Even though it is general anesthesia, it will be "light" anesthesia, which means we should only be a few hours in the hospital. However, the hospital is a good hour and a half drive away from us, and Daniel will be scheduled at 7:30 AM, so we get to choose between making an hour and a half drive during a time when we would normally be sleeping, or staying in a hotel the night before. And then we get to make a similar choice about the night after, because Daniel will need to be seen the next morning to make sure everything is going smoothly. We also have to have a pre-surgery visit at some point to let the doctor get some more measurements on Daniel's eyes and to discuss plans with the surgery coordinator, at which point we will choose a surgery date. We can probably take care of that pre-visit while on our way to Grandma's house for Thanksgiving, since we will be driving through that city anyway. The doctor said that due to Daniel's age, removing the cataract is not urgent; that is, having it there is not going to change the way Daniel's brain processes visual input, it is just going to mean he has less visual input than he might otherwise. However, we will probably try to get it out in January before Tim goes back to work, so that we can move on to the business of fitting tinted contact lenses. Daniel will only need to miss a couple of days of school, which he will be disappointed about. :-P He should not be in pain after the surgery, and recovery will mostly involve remembering to use several different kinds of eyedrops and making sure that he doesn't pick up anything heavy (like his little sister!) for several weeks.
After our appointment was over, we stopped by McDonald's before heading back to pick up Esther. Daniel was very hungry by that time, and enjoyed the treat of a hamburger and french fries and soda. I told him what the doctor had told me about how the surgery would work. He was interested and positive, although dubious that he could go to sleep unless they gave him a comforter to sleep under. (I had described anesthesia as "they will give you medicine that will make you sleep and not wake up when they are taking that thing out of your eye.") I sure hope he's happy with how his eye works after the surgery is over!!
Thursday, November 3, 2011
Insight
Shortly before we left for China, we got a call from a social worker at our placing adoption agency. (They have families speak with social workers at several different points, partly of course to help families prepare for meeting their child, but also I think to help lower any psychological barriers to calling the agency for help if there are problems once the child is in the family.) Anyway, at one point during the conversation she asked me if I had noticed the part in our son's video interview where he described himself as "bad-tempered." I said we had, and told her how we thought about it. She said she was glad we had noticed and added, "That's a really good sign that he has that kind of insight." I had not thought about that before, but she had a good point: some children from difficult backgrounds have never learned to think about themselves in that kind of way.
I have thought about her comment many times since, as we have gotten to know Daniel. He has definite ideas about who he is and what he is like. He has an ability to put himself in other people's shoes. And, he is very insightful.
Early on after coming to the U.S., Daniel started noticing the differences between children raised in a family and children raised in an orphanage. He doesn't just react to the differences, he can describe them. For example, watching a friend of Esther rip through her presents at her birthday party, he commented, "Children in families just glance at their presents [literally: look at them with one eye!] and leave them on the floor. Children in an orphanage would never do that! They know someone might take their present, so they will hold on to it. But in a family, you can leave your things on the floor and nobody will take them." He has also commented on the developmental differences between children raised in different settings. He almost invariably winds up his observations by commenting, "It's better to be raised in a family."
And then there was the comment he made over the phone to a "teacher" (not sure whether she was one of his school teachers or a senior staff member at the orphanage; he has stayed in touch with adults of both varieties and gives them all the title of teacher). He mentioned something he does sometimes which is young for his age. She apparently told him he was too old for that behavior, because he replied, "When I was little I never got to do that with my mother, so now even though I am big I want to do it sometimes." How does he know these things?? There are so many adults out there who don't understand what is triggering the things they do, and yet here is this fourteen-year-old with no special training who has a very clear perception of what is going on emotionally in our relationship. I absolutely agree with his assessment...but I had no idea that he knew that!
Not that I'm in a hurry for Daniel to grow up, seeing as we only just met each other, but there is some remarkable stuff inside of him (layered in between the boundary-pushing and the smart mouth!) and I can't wait to see what kind of a man he grows into.
I have thought about her comment many times since, as we have gotten to know Daniel. He has definite ideas about who he is and what he is like. He has an ability to put himself in other people's shoes. And, he is very insightful.
Early on after coming to the U.S., Daniel started noticing the differences between children raised in a family and children raised in an orphanage. He doesn't just react to the differences, he can describe them. For example, watching a friend of Esther rip through her presents at her birthday party, he commented, "Children in families just glance at their presents [literally: look at them with one eye!] and leave them on the floor. Children in an orphanage would never do that! They know someone might take their present, so they will hold on to it. But in a family, you can leave your things on the floor and nobody will take them." He has also commented on the developmental differences between children raised in different settings. He almost invariably winds up his observations by commenting, "It's better to be raised in a family."
And then there was the comment he made over the phone to a "teacher" (not sure whether she was one of his school teachers or a senior staff member at the orphanage; he has stayed in touch with adults of both varieties and gives them all the title of teacher). He mentioned something he does sometimes which is young for his age. She apparently told him he was too old for that behavior, because he replied, "When I was little I never got to do that with my mother, so now even though I am big I want to do it sometimes." How does he know these things?? There are so many adults out there who don't understand what is triggering the things they do, and yet here is this fourteen-year-old with no special training who has a very clear perception of what is going on emotionally in our relationship. I absolutely agree with his assessment...but I had no idea that he knew that!
Not that I'm in a hurry for Daniel to grow up, seeing as we only just met each other, but there is some remarkable stuff inside of him (layered in between the boundary-pushing and the smart mouth!) and I can't wait to see what kind of a man he grows into.