Kellin had his first appointment with the pediatric ophthalmologist on Monday. This was a preliminary visit and exam to discuss the sedated MRI/eye exam/ultrasound that Kellin will have in a couple weeks. The purpose of all of this is to accurately diagnose Kellin's eye condition and to see if there is potentially anything that could be done to give him more vision. At this first visit, the doctor feels that the most accurate diagnosis is probably microthalmia (small eyes). For those of you who haven't seen Kellin, his eyes are small and usually closed or only partly open. His eyes pretty much just look white, although he has a darker spot in both eyes that sort of looks like a pupil (although not as dark or well-defined as a pupil generally would be). The sedated exam will allow the doctor to look at the formation of Kellin's eyes and brain. It is not likely that anything can be done to give him more vision, but it is possible so of course we want to explore that.
In other news, Kellin continues to eat like a champ. He is finishing off half to a full jar of baby food per meal, three times a day. He still fusses about it sometimes but is getting better about opening his mouth. He sometimes holds a spoon but prefers not to, and he doesn't usually like the feeling of food on his hands or face. I think he hates that way more than he dislikes food in his mouth. Too bad he hasn't figured out that if he holds still, we could get the food all the way into his mouth without smearing it on his face. :) He still tends to wiggle around and turn his head a lot.
He is getting closer to crawling! He never goes into a hands-and-knees position by himself but if I put him into it, he will tolerate it for a while. He is completely unmotivated to try crawling, but I have found in the last couple days that if I put his favorite musical toy a few feet away and turn it on, he will move forward with a little help. Still NOT his favorite activity.
As far as the other kids - Pooh is doing awesome with potty-training! He usually tells us when he needs to go and then sits and does his business. He is even starting to poop in the potty (sorry to gross everyone out)! Rabbit is working on her school play. She is a narrator and has the honor of being the person who introduces the whole show to the audience. Pretty exciting! Tigger is still Tigger - energetic and talkative as always. He is into the game Minecraft now and talks about it constantly. Along with his Legos, of course! All is well in our household!
Wednesday, February 25, 2015
Friday, February 20, 2015
This Kid is Amazing!
Kellin has been home four weeks (tomorrow), and I have realized that this kid is amazing!! He does something new every day! His newest accomplishments:
Kellin is EATING! As of about three days ago, he has decided that eating from a spoon is okay, and he will eat up to half a jar of baby food fruits or veggies at a meal! He still fusses about it a little sometimes, but he also smiles sometimes and willingly opens his mouth for the spoon. Sometimes he puts the spoon in his mouth himself.
He holds and explores nearly everything he can find! Remember that when I met him nearly six week ago, he would not grasp anything in his hands and if I wrapped his fingers around it, he would immediately drop it. Now he holds toys, puts them in his mouth, shakes them, feels around for them if he drops them, AND he is learning how to turn musical toys on by pushing buttons (okay, he just bangs on them until the music starts, but hey, that counts, right?). He also has favorite toys.
If he's in a good mood, he will tolerate being on his tummy. He lays on his tummy on the floor or on top of Mommy or Daddy, and he will go up into a hands-and-knees position (with help). We're hoping he will learn to crawl at some point!
He giggles SO much more! He giggles when other people giggle, when he is tickled, and when Daddy sings certain songs. He really has the most precious giggle.
He is SLEEPING! Okay, he still wakes up once during the night most nights, but all I have to do is help him find his blankie, cover him back up, and say "night-night," and he usually goes right back to sleep.
He seems to be responding to his name! He is definitely responding to familiar voices, and it seems like he listens when he hears his name.
He is stimming much, much less. I hardly ever see him hit his eyes anymore, and he is not poking his eyes nearly as much. He rarely plays with his lips (sending spit flying everywhere). Of course, I still have to be persistent with reminding him, but he is easily re-directed most of the time. He still has some other stims, but they are not harmful and they are comforting to him. I think he is actually enjoying using toys instead.
He has gained 1 1/2 pounds! He now weighs almost 21 pounds!
He went to see the orthopedic doctor and for the most part, he looks good! His hips are a little loose but not dislocated, so we just need to see how they develop now that he is able to stand, walk, and move around throughout the day.
He is definitely understanding a few words! He responds to "up" by lifting his arms. He sometimes reaches for his bottle when he hears "eat." He stops what he is doing if he hears "no." He is learning what "all done" means. I think he knows "blankie" and "choo-choo" (meaning his ride-on train). We are also working on "diaper" and "night-night." And of course, trying to learn "Mama" and "Dada" and the names of his brothers and sister.
And in other news, Pooh (Kellin's "twin") IS OUT OF DIAPERS (at least when he's awake - we're still doing diapers for sleeping). Looking forward to only having ONE in diapers.
Kellin is EATING! As of about three days ago, he has decided that eating from a spoon is okay, and he will eat up to half a jar of baby food fruits or veggies at a meal! He still fusses about it a little sometimes, but he also smiles sometimes and willingly opens his mouth for the spoon. Sometimes he puts the spoon in his mouth himself.
He holds and explores nearly everything he can find! Remember that when I met him nearly six week ago, he would not grasp anything in his hands and if I wrapped his fingers around it, he would immediately drop it. Now he holds toys, puts them in his mouth, shakes them, feels around for them if he drops them, AND he is learning how to turn musical toys on by pushing buttons (okay, he just bangs on them until the music starts, but hey, that counts, right?). He also has favorite toys.
If he's in a good mood, he will tolerate being on his tummy. He lays on his tummy on the floor or on top of Mommy or Daddy, and he will go up into a hands-and-knees position (with help). We're hoping he will learn to crawl at some point!
He giggles SO much more! He giggles when other people giggle, when he is tickled, and when Daddy sings certain songs. He really has the most precious giggle.
He is SLEEPING! Okay, he still wakes up once during the night most nights, but all I have to do is help him find his blankie, cover him back up, and say "night-night," and he usually goes right back to sleep.
He seems to be responding to his name! He is definitely responding to familiar voices, and it seems like he listens when he hears his name.
He is stimming much, much less. I hardly ever see him hit his eyes anymore, and he is not poking his eyes nearly as much. He rarely plays with his lips (sending spit flying everywhere). Of course, I still have to be persistent with reminding him, but he is easily re-directed most of the time. He still has some other stims, but they are not harmful and they are comforting to him. I think he is actually enjoying using toys instead.
He has gained 1 1/2 pounds! He now weighs almost 21 pounds!
He went to see the orthopedic doctor and for the most part, he looks good! His hips are a little loose but not dislocated, so we just need to see how they develop now that he is able to stand, walk, and move around throughout the day.
He is definitely understanding a few words! He responds to "up" by lifting his arms. He sometimes reaches for his bottle when he hears "eat." He stops what he is doing if he hears "no." He is learning what "all done" means. I think he knows "blankie" and "choo-choo" (meaning his ride-on train). We are also working on "diaper" and "night-night." And of course, trying to learn "Mama" and "Dada" and the names of his brothers and sister.
And in other news, Pooh (Kellin's "twin") IS OUT OF DIAPERS (at least when he's awake - we're still doing diapers for sleeping). Looking forward to only having ONE in diapers.
Monday, February 16, 2015
Is Blindness Scary?
Kellin has been home for over three weeks now. And here's something I have realized - the majority of Kellin's delays and difficulties do NOT appear to be directly caused by his blindness. Most of his delays are from neglect and institutionalization, not from his lack of vision. Now certainly his delays are indirectly related to his blindness; that is, he probably would not have experienced the level of neglect he did if he had normal vision. It is likely that a seeing child of his age would have been allowed out of his crib to play, interacted with other children, given solid food and allowed to feed himself, etc.
Blindness is not a scary disability. But the effects of an orphanage environment on a blind child ARE scary! Consider a typical, healthy baby boy. How would he develop if he was left in a crib most of the time, interacted with only when it was time for diaper changes and when he was handed a bottle a few times a day? His development would be severely affected. Now consider the same scenario, but with a healthy baby boy who also happens to be blind. In addition to not experiencing anything outside of his crib, he also cannot see what is going on around him. He has no opportunity to observe others and learn from watching. You would expect that his delays would be even more significant. We believe this is what happened to our Kellin. And it happens to many, many other blind orphans around the world. As the years go by, blind children in these settings who were born with the potential to learn and develop typically become more and more isolated in their own worlds, more and more disabled, never learning to be independent in anything, until they completely lose the capacity to learn and develop in any sort of typical way. It's a scary, sickening thought.
Blindness is not a scary disability. Children who are blind or have limited vision can learn to talk, move around independently, read, care for themselves, do chores, have jobs . . . the possibilities are endless. A few months ago, our family had the opportunity to meet a man who has been blind since birth. During that meeting, we learned that he runs his own computer repair business and lives a fully independent life. In addition, he is an outgoing, talkative guy with a great sense of humor. He was such an inspiration for us! He is a wonderful example of what we hope Kellin can achieve!
Once again, I am going to post a picture and link for this little boy who I desperately hope gets to experience a family. He is five years old and blind, and unlike many orphans, he lives in a group home for children who are blind or visually impaired. He is well cared for and is being taught skills that will help him prepare for independent living. He's awfully cute too. :) He would do so well in a family! Take a minute to go and read about Jesse, share his story, help me to find him a family.
http://reecesrainbow.org/59002/jesse
Now a quick Kellin update:
-He is tolerating being on his tummy more and will let us put him into a hands-and-knees position.
-He is sleeping more and going back to sleep more easily when he wakes in the night.
-When I put food into his mouth with my finger, sometimes he swallows it.
-He reaches for our hands to indicate that he wants to sing "Open, Shut Them."
-He is less scared by the noise his brothers make when they start tearing around the house.
-He seems to be enjoying his bath more.
-When he drops a toy, he uses his hands to "look" for it.
-He will cruise along the couch (in a very slow, shuffling kind of way).
Blindness is not a scary disability. But the effects of an orphanage environment on a blind child ARE scary! Consider a typical, healthy baby boy. How would he develop if he was left in a crib most of the time, interacted with only when it was time for diaper changes and when he was handed a bottle a few times a day? His development would be severely affected. Now consider the same scenario, but with a healthy baby boy who also happens to be blind. In addition to not experiencing anything outside of his crib, he also cannot see what is going on around him. He has no opportunity to observe others and learn from watching. You would expect that his delays would be even more significant. We believe this is what happened to our Kellin. And it happens to many, many other blind orphans around the world. As the years go by, blind children in these settings who were born with the potential to learn and develop typically become more and more isolated in their own worlds, more and more disabled, never learning to be independent in anything, until they completely lose the capacity to learn and develop in any sort of typical way. It's a scary, sickening thought.
Blindness is not a scary disability. Children who are blind or have limited vision can learn to talk, move around independently, read, care for themselves, do chores, have jobs . . . the possibilities are endless. A few months ago, our family had the opportunity to meet a man who has been blind since birth. During that meeting, we learned that he runs his own computer repair business and lives a fully independent life. In addition, he is an outgoing, talkative guy with a great sense of humor. He was such an inspiration for us! He is a wonderful example of what we hope Kellin can achieve!
Once again, I am going to post a picture and link for this little boy who I desperately hope gets to experience a family. He is five years old and blind, and unlike many orphans, he lives in a group home for children who are blind or visually impaired. He is well cared for and is being taught skills that will help him prepare for independent living. He's awfully cute too. :) He would do so well in a family! Take a minute to go and read about Jesse, share his story, help me to find him a family.
http://reecesrainbow.org/59002/jesse
Now a quick Kellin update:
-He is tolerating being on his tummy more and will let us put him into a hands-and-knees position.
-He is sleeping more and going back to sleep more easily when he wakes in the night.
-When I put food into his mouth with my finger, sometimes he swallows it.
-He reaches for our hands to indicate that he wants to sing "Open, Shut Them."
-He is less scared by the noise his brothers make when they start tearing around the house.
-He seems to be enjoying his bath more.
-When he drops a toy, he uses his hands to "look" for it.
-He will cruise along the couch (in a very slow, shuffling kind of way).
Monday, February 9, 2015
Two Weeks Home
Kellin has been home two weeks and two days. He's been with me for four weeks. For anyone who's wondering how he is doing, I thought I'd attempt a thorough update.
Medical: Kellin has already had a few doctor appointments, and the good news is that nothing unanticipated has come up (yet), at least nothing serious. He is dangerously underweight (we knew that). At his first appointment almost two weeks ago, he was 19 1/2 pounds without clothes on. At his next appointment a week later, he was about 20 1/2 pounds, with clothes on. So we suspect he really hadn't gained much, but possibly a few ounces. We have appointments coming up with an orthopedic doctor (because when Kellin gets really upset, he pops his hip - we don't really know what that's all about) and with a pediatric ophthalmologist to hopefully get a solid diagnosis for Kellin's eye condition. We are not convinced that the diagnosis in his file is accurate. We also are anxious to find out exactly how much he can see. We know that it's not much - but he at least has light perception.
Eating: For the most part, this has not changed. Kellin is still receiving all of his food through a bottle, which now contains a thick mixture of toddler formula, pediasure, rice cereal, baby food, milk, and water. We try to have him play with food a few times a day, and sometimes he tolerates it if I use my finger to put tiny amounts of baby food into his mouth. Sometimes he screams.
Sleeping: Kelllin's sleeping is slowly improving. He is sleeping more hours at a time and when he wakes up at night, he goes back to sleep more easily. Sometimes he lets us rock him. We are still limiting his naptime during the day in hopes of getting him to sleep through an entire night. So we are all getting more sleep - but there is room for improvement.
Attachment/Bonding: We have seen some really great gains in this area. Kellin really enjoys being held and reaches for us sometimes. The other day I was sitting on the floor and he was standing at his rocker next to me, when he suddenly turned to me, reached out his arms, and then tried to climb into my lap. While Kellin has not had much interaction with people outside of our family, it has been clear when we have had appointments that he knows familiar versus unfamiliar people and is more comfortable with us than with strangers. This is a great first step in the bonding process.
Motor Skills: Kellin is moving around much more than he did just a few weeks ago. He likes to stand and walk, either by holding our hands or by pushing a toy around. He can sit steadily and play, although he prefers to lay down on the floor. He sits on a ride-on train and pushes it backward around the room (he hasn't figured out forward yet) and he sits on a rocker and moves it back and forth. The other day, he actually lifted one leg over the rocker and got himself off all by himself! We are working on "tummy time," because we would really like him to learn to crawl. While he still dislikes being on his tummy, he is tolerating it more and more, and with a lot of help, he will go into a hands-and-knees position for a short time. He grasps toys, passes them from one hand to the other, and sometimes feels around for them if he drops them. He moves them around and puts them to his mouth to explore them. A huge change from the child who would not even hold a toy just four weeks ago!
Communication: No, Kellin is not using any words yet. However, we have seen that he seems to understand a few basic words - eat, blankie, spoon. He is very responsive to singing and even sings the tune to "Twinkle, Twinkle, Little Star" to himself. He babbles quite a bit and has seemed to copy sounds that we babble to him a few times. He communicates with gestures sometimes - holding out arms to be picked up, reaching for our hands if he wants to stand up or do the actions to a song. He cries when he doesn't like something. Some days, it seems like he fusses all day long - which is frustrating, but also encouraging, because those first few days he never cried. He is certainly becoming comfortable enough to let us know what he wants and doesn't want! The hard part is that he needs to be pushed out of his comfort zone in order to learn and make progress, so sometimes we do try to have him do things he doesn't really like (like touching food, sitting to play instead of laying down, etc.).
Socially: Kellin is much, much more engaged with people. He plays along with the actions to songs. He is willing to hold and explore objects with different textures, shapes, and sounds. He is stimming much, much less, although we still have to remind him often. Basically, we are trying to teach him that there are other (more appropriate and fun) things he can do with his hands, other than hitting himself, poking his eyes, or playing with his spit. We often tell him "hands down" and then hand him a toy or other object as a distraction or start a song that has actions for him to do with his hands. It is intense some days to stay on top of it - but we are seeing it make a big difference. I have also noticed that Kellin does have some self-control, because after I have reminded him, sometimes his hand will go back to his face - and then he will stop himself and move his hand away. He also sometimes stops the stimming if I just say his name or say "hands down," not even touching him. Some of his stims (like clapping and pulling on his cheeks to open his eyes more) appear to be harmless and we have not attempted to stop them, at least not now.
Overall, we are adjusting. Some days are discouraging, when it seems that we haven't come very far, but other days, I am in awe of how far Kellin has really come. We are gearing up to start some more formal therapy with him soon, and I am looking forward to having more direction and suggestions for activities we can do to help him progress.
Our other kids are doing very well. Rabbit thinks she is Kellin's third parent and is always begging to hold him and play with him. This has turned out to be a very good thing, because she is old enough to be responsible for him for short periods of time, and she is very good at helping us work on specific skills with him. It allows us to take a few minutes to clean up, make a phone call, or take care of other quick chores. Tigger enjoys saying hi to Kellin and talking to him for a minute here and there, but of course Tigger is our little tornado, always on the move, and so I think Kellin is kind of boring to him right now. Pooh is just the sweetest. Even though he is technically the little brother (by two months), he has definitely taken on a "big brother" role with Kellin. He talks to him, brings him toys, sings to him, holds his hand, and is thrilled to "watch" him if I step into the other room for a second. Kellin is settling in as a very important part of our family, and we are so happy to have him here after all the months of waiting!
Medical: Kellin has already had a few doctor appointments, and the good news is that nothing unanticipated has come up (yet), at least nothing serious. He is dangerously underweight (we knew that). At his first appointment almost two weeks ago, he was 19 1/2 pounds without clothes on. At his next appointment a week later, he was about 20 1/2 pounds, with clothes on. So we suspect he really hadn't gained much, but possibly a few ounces. We have appointments coming up with an orthopedic doctor (because when Kellin gets really upset, he pops his hip - we don't really know what that's all about) and with a pediatric ophthalmologist to hopefully get a solid diagnosis for Kellin's eye condition. We are not convinced that the diagnosis in his file is accurate. We also are anxious to find out exactly how much he can see. We know that it's not much - but he at least has light perception.
Eating: For the most part, this has not changed. Kellin is still receiving all of his food through a bottle, which now contains a thick mixture of toddler formula, pediasure, rice cereal, baby food, milk, and water. We try to have him play with food a few times a day, and sometimes he tolerates it if I use my finger to put tiny amounts of baby food into his mouth. Sometimes he screams.
Sleeping: Kelllin's sleeping is slowly improving. He is sleeping more hours at a time and when he wakes up at night, he goes back to sleep more easily. Sometimes he lets us rock him. We are still limiting his naptime during the day in hopes of getting him to sleep through an entire night. So we are all getting more sleep - but there is room for improvement.
Attachment/Bonding: We have seen some really great gains in this area. Kellin really enjoys being held and reaches for us sometimes. The other day I was sitting on the floor and he was standing at his rocker next to me, when he suddenly turned to me, reached out his arms, and then tried to climb into my lap. While Kellin has not had much interaction with people outside of our family, it has been clear when we have had appointments that he knows familiar versus unfamiliar people and is more comfortable with us than with strangers. This is a great first step in the bonding process.
Motor Skills: Kellin is moving around much more than he did just a few weeks ago. He likes to stand and walk, either by holding our hands or by pushing a toy around. He can sit steadily and play, although he prefers to lay down on the floor. He sits on a ride-on train and pushes it backward around the room (he hasn't figured out forward yet) and he sits on a rocker and moves it back and forth. The other day, he actually lifted one leg over the rocker and got himself off all by himself! We are working on "tummy time," because we would really like him to learn to crawl. While he still dislikes being on his tummy, he is tolerating it more and more, and with a lot of help, he will go into a hands-and-knees position for a short time. He grasps toys, passes them from one hand to the other, and sometimes feels around for them if he drops them. He moves them around and puts them to his mouth to explore them. A huge change from the child who would not even hold a toy just four weeks ago!
Communication: No, Kellin is not using any words yet. However, we have seen that he seems to understand a few basic words - eat, blankie, spoon. He is very responsive to singing and even sings the tune to "Twinkle, Twinkle, Little Star" to himself. He babbles quite a bit and has seemed to copy sounds that we babble to him a few times. He communicates with gestures sometimes - holding out arms to be picked up, reaching for our hands if he wants to stand up or do the actions to a song. He cries when he doesn't like something. Some days, it seems like he fusses all day long - which is frustrating, but also encouraging, because those first few days he never cried. He is certainly becoming comfortable enough to let us know what he wants and doesn't want! The hard part is that he needs to be pushed out of his comfort zone in order to learn and make progress, so sometimes we do try to have him do things he doesn't really like (like touching food, sitting to play instead of laying down, etc.).
Socially: Kellin is much, much more engaged with people. He plays along with the actions to songs. He is willing to hold and explore objects with different textures, shapes, and sounds. He is stimming much, much less, although we still have to remind him often. Basically, we are trying to teach him that there are other (more appropriate and fun) things he can do with his hands, other than hitting himself, poking his eyes, or playing with his spit. We often tell him "hands down" and then hand him a toy or other object as a distraction or start a song that has actions for him to do with his hands. It is intense some days to stay on top of it - but we are seeing it make a big difference. I have also noticed that Kellin does have some self-control, because after I have reminded him, sometimes his hand will go back to his face - and then he will stop himself and move his hand away. He also sometimes stops the stimming if I just say his name or say "hands down," not even touching him. Some of his stims (like clapping and pulling on his cheeks to open his eyes more) appear to be harmless and we have not attempted to stop them, at least not now.
Overall, we are adjusting. Some days are discouraging, when it seems that we haven't come very far, but other days, I am in awe of how far Kellin has really come. We are gearing up to start some more formal therapy with him soon, and I am looking forward to having more direction and suggestions for activities we can do to help him progress.
Our other kids are doing very well. Rabbit thinks she is Kellin's third parent and is always begging to hold him and play with him. This has turned out to be a very good thing, because she is old enough to be responsible for him for short periods of time, and she is very good at helping us work on specific skills with him. It allows us to take a few minutes to clean up, make a phone call, or take care of other quick chores. Tigger enjoys saying hi to Kellin and talking to him for a minute here and there, but of course Tigger is our little tornado, always on the move, and so I think Kellin is kind of boring to him right now. Pooh is just the sweetest. Even though he is technically the little brother (by two months), he has definitely taken on a "big brother" role with Kellin. He talks to him, brings him toys, sings to him, holds his hand, and is thrilled to "watch" him if I step into the other room for a second. Kellin is settling in as a very important part of our family, and we are so happy to have him here after all the months of waiting!
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