My sister-in-law gave me a necklace for Christmas. She had texted me earlier in the month asking me what my favorite word was and I replied, “anything but the word ‘awesome’”. She picked ‘breathe’ because she likely guessed I needed to take a step back and just breath sometimes.
It’s hard dealing with my daughter’s eye situation. It’s hard on her, it’s hard on her brother and it’s hard on us, as her parents, to not know if she’ll lose more vision or if through a lot of drops, hospital visits, surgeries, glasses, lenses, etc. be able to function as a seeing member of our society. It’s a lot of unknowns.
It’s not only hard for my husband and me, it’s hard for the grandparents, aunts, uncles and everyone who counts my daughter as someone special to them. We’re all struggling with the implications and the grief of what may be lost or the pain of having to go through so much medically to just try and be as close to normal as possible.
It’s good to breathe and know things will turn out some way and that way will be supported by us all.
The Big Boy Update: My son was eating some Star Wars Jelly Bellies today. I don’t know what transpired between him and my husband but from the kitchen I heard him say, “they taste like storm troopers.”
The Tiny Girl Chronicles: On the sad front, my daughter wanted to take a turn on the scooter yesterday. I told her she could have a turn when her brother was finished. We’ve had that rule in place for as long as they remember, but this time she said mournfully, “but I won’t know where the scooter is when he’s done.” I told her I would show her where her brother left it.
Thursday, December 31, 2015
Wednesday, December 30, 2015
The Flooded Creek
We’ve been on adventures before to the creek behind our house and today turned out to be another adventure with a water twist. My husband said the children were going a bit stir crazy with the continual raining and given the temperature of sixty-six degrees (unseasonable for certain) perhaps a jaunt down to the creek was in order.
Rain boots and coats donned, we all four trudged carefully down the slippery slope that is the mountainous-feeling incline behind our house towards the creek we can barely make out when the leaves have fallen. There were a few slips but we made it to the silt fence and then beyond to what is the “flood plane” around the creek.
Flooded it was. We’d been getting flood warnings from our phones and the television for two days and it was apparent what the words ‘flood’ and ‘plane’ added together meant because it was flooded all across the plane of the ground. Fortunately for the three of us wearing rain boots (my husband got me some for Christmas) our feet stayed dry.
The splashing in deep water was fun and the creek looked more like a fast-flowing river close to bursting over the top of the creek walls. We made it close to our neighbor’s exit path but decided to go a new way home, mostly because my son found a mini-waterfall. Exiting at the top into the back yard of one of our neighbors was much more challenging than we anticipated, mostly because of my daughter.
We had her eye patched but she can’t see branches and there were not only branches, there were brambles. We all got stuck and she was angry. We made it out eventually and all wished we could have fit through the small apertures the dog was able to squeeze through without getting attacked by sharp thorns.
When we got back to the house it had stopped raining and the children wanted to stay outside for longer in bare feet. My husband took down the holiday lights while I got rain jackets and boots cleaned up inside. It was our rainiest adventure yet.
The Big Boy Update: My son called the neighbors children ’stupid’ to their face early this morning. He lost screen time for the rest of the day. He was mad at me, but I was madder.
The Tiny Girl Chronicles: My daughter is much less interested in her iPad now that we’re asking her to spend some time during the day on it. Keeping her in front of a screen is more challenging than I would have expected.
Tuesday, December 29, 2015
Eyelashes
From the title of this post I bet you’re thinking it’s about my daughter because it’s related to eyes. It is not. It’s about me. It’s about a fun Christmas present my best running buddy and friend gave me. Several weeks ago she had me block off time on my calendar for this afternoon. She said it was for a surprise.
Today she told me I had an appointment with her to get eyelashes put on. I knew nothing about this artificial eyelash thing until a few months ago. I was having dinner with some of my girlfriends and they talked about how they needed to get their eyelashes redone. I was curious. I was interested. I asked lots of questions.
It turned out to be some serious eyelash action. It’s not a sheet of eyelashes you lay across your top lid and then peel off later. This is individual eyelash pieces, each glued on to an existing eyelashe to make what you have bigger, longer and more dramatic. It’s eyelash augmentation.
When we arrived at the appointment I took off my shoes and lay down on a table similar to those used for massages. The technician taped down my lower lashes so they would stay out of the way. Then, she very carefully and delicately dipped individual lashes in an adhesive and connected them to my natural lashes. She put about fifty lashes on each eye and I tried to lie still and not move (a difficult task if you know me.)
I told her if I was doing this I wanted big. I wanted bold. I wanted eyelashes that could start a small tornado if I batted them fast enough. She told me she would see what she could do. She used the “C” shaped lashes for a big, curved look and selected ten, eleven and twelve millimeter lengths to achieve a natural look across my eye.
When she was done and I sat up I was really, I mean really, impressed. I mean my eyes looked so, well, wow. They were all laughing at me because I was having such a good time giggling and looking at the mirror and saying I couldn’t believe what a difference the lashes made. I feel much more dramatic now. Hell, I feel like I’ve even put on make up (which I never wear.)
I can’t even tell the lashes are there, which is very interesting, because they look so big I would expect to feel something. They’ll naturally fall off over the next three weeks. For the next three weeks I’m going to feel rather like a movie star with my big, bold eyes. What a great Christmas present.
The Big Boy Update: Two comments direct from my son over the past week. Both are very true. “I’m a messy eater.” and “I’m the sloppiest eater you’ve ever seen. I’m a caveman.”
The Tiny Girl Chronicles: My daughter and son were playing a game where you make hamburgers with different ingredients in them. They love this game and over time had moved the hamburger pieces all over the house. With the help of my mother and our recent organization efforts we were able to find all the pieces. As they were playing a modified, kid-improvised version of the game my daughter said out loud, “if you’re all done eating your hamburger, you may go away from this restaurant.”
Today she told me I had an appointment with her to get eyelashes put on. I knew nothing about this artificial eyelash thing until a few months ago. I was having dinner with some of my girlfriends and they talked about how they needed to get their eyelashes redone. I was curious. I was interested. I asked lots of questions.
It turned out to be some serious eyelash action. It’s not a sheet of eyelashes you lay across your top lid and then peel off later. This is individual eyelash pieces, each glued on to an existing eyelashe to make what you have bigger, longer and more dramatic. It’s eyelash augmentation.
When we arrived at the appointment I took off my shoes and lay down on a table similar to those used for massages. The technician taped down my lower lashes so they would stay out of the way. Then, she very carefully and delicately dipped individual lashes in an adhesive and connected them to my natural lashes. She put about fifty lashes on each eye and I tried to lie still and not move (a difficult task if you know me.)
I told her if I was doing this I wanted big. I wanted bold. I wanted eyelashes that could start a small tornado if I batted them fast enough. She told me she would see what she could do. She used the “C” shaped lashes for a big, curved look and selected ten, eleven and twelve millimeter lengths to achieve a natural look across my eye.
When she was done and I sat up I was really, I mean really, impressed. I mean my eyes looked so, well, wow. They were all laughing at me because I was having such a good time giggling and looking at the mirror and saying I couldn’t believe what a difference the lashes made. I feel much more dramatic now. Hell, I feel like I’ve even put on make up (which I never wear.)
I can’t even tell the lashes are there, which is very interesting, because they look so big I would expect to feel something. They’ll naturally fall off over the next three weeks. For the next three weeks I’m going to feel rather like a movie star with my big, bold eyes. What a great Christmas present.
The Big Boy Update: Two comments direct from my son over the past week. Both are very true. “I’m a messy eater.” and “I’m the sloppiest eater you’ve ever seen. I’m a caveman.”
The Tiny Girl Chronicles: My daughter and son were playing a game where you make hamburgers with different ingredients in them. They love this game and over time had moved the hamburger pieces all over the house. With the help of my mother and our recent organization efforts we were able to find all the pieces. As they were playing a modified, kid-improvised version of the game my daughter said out loud, “if you’re all done eating your hamburger, you may go away from this restaurant.”
Monday, December 28, 2015
All About Focus
I had an opportunity to speak with my neighbor who is a retina surgeon yesterday. I’ve mentioned her before said how grateful I am for her guidance through this ocular maze we’ve been traveling. She is never in a hurry and always takes time to explain things thoroughly and in a way I can understand. We still haven’t met and I still owe her a huge hug (which can hardly cover my thanks) when we meet. We had plans to meet at the luminary event at our clubhouse but it was quite the packed house and in the bustle we missed each other. This blog post is about what she told me last night about my daughter’s eyes.
The eyes, for all there physical smallness, are such tremendously complicated organs that doctors have specialties within specialties to address specific components of the eyes. Lisa told me the goal of a retina surgeon is to give the eye the ability to see. It is the ophthalmologist’s goal to help the eye see well. What we’re going through now with my daughter’s eye is to hopefully give her a functioning retina. Getting her vision to a point she can see will be the next step.
Lisa also told me some interesting things about how her vision can be corrected. There are three things that can be done. First, she can get glasses with a lens that corrects for the right eye. Second, there are contacts for children that are left in for a week at a time that can also correct for an eye with no natural lens. Third, there is a possibility of implanting an artificial lens. There are differing schools of thought on this and it’s not something we’d rush into, but it is a possibility. We will be working with my daughter’s ophthalmologist to find the best option for her.
The question is when to correct her eye? Let’s say on the fifth of January we get excellent news that my daughter’s eye is looking much better and the retinal detachment has mostly resolved. She would be seeing out of the eye, but it would be very blurry. Lisa told me her prescription would be more like +10 instead of +20. Getting her vision corrected so she can see as soon as the vision is relatively stable is important because of the potential for amblyopia. This is when the brain is receiving visual input from the eye but it has turned off the portion of the brain that processes it due to lack of use over time. My daughter has just turned four and we’re in a good window of age to prevent amblyopia, but it is something we’ll have to keep on top of, even if it means changing prescriptions over time as her vision changes.
I talked to her about my daughter’s left eye. We’re concerned about losing slowly over time the remaining vision she has because of the low pressure in the eye. She said Dr. Trese will not want to do anything to the left eye until the right eye is back to useful functioning for her. She thought it wouldn’t be possible to do a partial procedure to increase the pressure in the left eye without losing the lens like she did in the right. For now we’re hoping the pressure increases in the left eye and her vision improves on its own (or at least doesn’t degrade.) Time is going to be our guide on that front.
I want to tell another story about how I was introduced to Lisa. When our neighborhood was new and barely occupied those of us who were here banded together to communicate. Tim, one of the new neighbors created a Google group that is well-used by our neighborhood today. Tim and I see each other at the pool or at neighborhood events from time to time. We both share a passion for Tesla and Elon Musk’s pursuits and talk about them whenever we run into each other.
When my daughter suddenly lost her vision and was admitted to the hospital Tim heard about it and did one of those all night research binges trying to figure out what the heck could be going on. He sent me suggestions and ideas and then he texted me and told me one of our neighbors who lived a few doors down from his was a retina surgeon and he was going to ask her to call me. He did and she did and I have another special friendship I wouldn’t have had otherwise.
Then, today, I get this letter in the mail. It’s on a medium-sized piece of note pad paper and it’s a letter from Tim. As I read it, tears were rolling down my face because it was filled with words of encouragement and strength and understanding and hope that everything is going to be all right and a little girl who just turned four won’t end up blind.
Thank you Tim. Thank you Lisa. Thank you family and thank you friends for all being there for us. It means more than we can ever express.
The Big Boy Update: Signs your son has had too much screen time: after eating his snack and deciding he didn’t want to finish his yogurt he said, “can I pause my snack?” I told him he could pause it in the refrigerator for later.
The Tiny Girl Chronicles: My daughter “loves” lots of things lately. She was standing on a stool fondly looking at her gingerbread house and mused, “I just LOVE Christmas…I just love gingerbread houses.”
The eyes, for all there physical smallness, are such tremendously complicated organs that doctors have specialties within specialties to address specific components of the eyes. Lisa told me the goal of a retina surgeon is to give the eye the ability to see. It is the ophthalmologist’s goal to help the eye see well. What we’re going through now with my daughter’s eye is to hopefully give her a functioning retina. Getting her vision to a point she can see will be the next step.
Lisa also told me some interesting things about how her vision can be corrected. There are three things that can be done. First, she can get glasses with a lens that corrects for the right eye. Second, there are contacts for children that are left in for a week at a time that can also correct for an eye with no natural lens. Third, there is a possibility of implanting an artificial lens. There are differing schools of thought on this and it’s not something we’d rush into, but it is a possibility. We will be working with my daughter’s ophthalmologist to find the best option for her.
The question is when to correct her eye? Let’s say on the fifth of January we get excellent news that my daughter’s eye is looking much better and the retinal detachment has mostly resolved. She would be seeing out of the eye, but it would be very blurry. Lisa told me her prescription would be more like +10 instead of +20. Getting her vision corrected so she can see as soon as the vision is relatively stable is important because of the potential for amblyopia. This is when the brain is receiving visual input from the eye but it has turned off the portion of the brain that processes it due to lack of use over time. My daughter has just turned four and we’re in a good window of age to prevent amblyopia, but it is something we’ll have to keep on top of, even if it means changing prescriptions over time as her vision changes.
I talked to her about my daughter’s left eye. We’re concerned about losing slowly over time the remaining vision she has because of the low pressure in the eye. She said Dr. Trese will not want to do anything to the left eye until the right eye is back to useful functioning for her. She thought it wouldn’t be possible to do a partial procedure to increase the pressure in the left eye without losing the lens like she did in the right. For now we’re hoping the pressure increases in the left eye and her vision improves on its own (or at least doesn’t degrade.) Time is going to be our guide on that front.
I want to tell another story about how I was introduced to Lisa. When our neighborhood was new and barely occupied those of us who were here banded together to communicate. Tim, one of the new neighbors created a Google group that is well-used by our neighborhood today. Tim and I see each other at the pool or at neighborhood events from time to time. We both share a passion for Tesla and Elon Musk’s pursuits and talk about them whenever we run into each other.
When my daughter suddenly lost her vision and was admitted to the hospital Tim heard about it and did one of those all night research binges trying to figure out what the heck could be going on. He sent me suggestions and ideas and then he texted me and told me one of our neighbors who lived a few doors down from his was a retina surgeon and he was going to ask her to call me. He did and she did and I have another special friendship I wouldn’t have had otherwise.
Then, today, I get this letter in the mail. It’s on a medium-sized piece of note pad paper and it’s a letter from Tim. As I read it, tears were rolling down my face because it was filled with words of encouragement and strength and understanding and hope that everything is going to be all right and a little girl who just turned four won’t end up blind.
Thank you Tim. Thank you Lisa. Thank you family and thank you friends for all being there for us. It means more than we can ever express.
The Big Boy Update: Signs your son has had too much screen time: after eating his snack and deciding he didn’t want to finish his yogurt he said, “can I pause my snack?” I told him he could pause it in the refrigerator for later.
The Tiny Girl Chronicles: My daughter “loves” lots of things lately. She was standing on a stool fondly looking at her gingerbread house and mused, “I just LOVE Christmas…I just love gingerbread houses.”
Sunday, December 27, 2015
Ninety Seconds of Emotion
I was talking to one of the teachers at my children’s school a few years ago as she dealt with a very upset toddler. She casually said, “the average emotion lasts less than ninety seconds.” I’ve been watching both children and adults ever since that comment and it’s proven to be a very astute statement. Children get angry or sad or upset throughout the day but every time it happens to them, it’s over with fairly quickly—or at least it is if you don’t make a big deal out of it as a parent.
As adults we develop a special skill called “agonizing” that enables us to loop through an negative emotion again and again, causing it to feed back on itself and build up the initial feeling into something far bigger and more ominous.
I’ve tried so hard to avoid the perils of depression with my daughter’s sight problem. She has lost over ninety percent of her vision (at least) as of right now and getting it back will be a long process involving multiple surgeries, lots of time, contacts or glasses, drops and activity restrictions. Most of all it’s going to be an enormous effort of faith and hope to emotionally make it through it all as the parent my daughter needs me to be.
The Big Boy Update: My son has been given the privilege of spending more time on his iPad over the holiday break. He was playing an app this morning I didn’t remember so I asked him when he got the app? He replied, “I’ve had it for a hundred years.”
The Tiny Girl Chronicles: My daughter will gladly help you with something if you ask her. She will probably offer to help you if you don’t ask her. Today my mother and I wanted to see how well she sorted some things by color and shape. We presented the test as a job we needed help with. My daughter said she’d be glad to help and as she started sorting out the yellow shapes she commented, “I help with everything.”
As adults we develop a special skill called “agonizing” that enables us to loop through an negative emotion again and again, causing it to feed back on itself and build up the initial feeling into something far bigger and more ominous.
I’ve tried so hard to avoid the perils of depression with my daughter’s sight problem. She has lost over ninety percent of her vision (at least) as of right now and getting it back will be a long process involving multiple surgeries, lots of time, contacts or glasses, drops and activity restrictions. Most of all it’s going to be an enormous effort of faith and hope to emotionally make it through it all as the parent my daughter needs me to be.
The Big Boy Update: My son has been given the privilege of spending more time on his iPad over the holiday break. He was playing an app this morning I didn’t remember so I asked him when he got the app? He replied, “I’ve had it for a hundred years.”
The Tiny Girl Chronicles: My daughter will gladly help you with something if you ask her. She will probably offer to help you if you don’t ask her. Today my mother and I wanted to see how well she sorted some things by color and shape. We presented the test as a job we needed help with. My daughter said she’d be glad to help and as she started sorting out the yellow shapes she commented, “I help with everything.”
Saturday, December 26, 2015
Upside Down Tray
My daughter should be spending a reasonable amount of time on her back each day. We’re trying, but we can only get her to do so a certain amount. She’s not ill and she has a need to move around, be happy, jump, and have fun as a four-year-old. We give her a dose of Benadryl once each day and try to get her to lie down on her back for a few hours to have the oil and PFO in her eyes press on the back of her retina. We’re moderately successful at getting this to happen.
We have been able to get her to start sleeping on her back, which she didn’t do before. That’s getting a lot of hours on her back each day. She also isn’t spending time leaning forward via different ways to handle artwork, eating, playing, etc. so we’re avoiding the bad direction as well. Overall, I hope it’s going to be what her retina and eye needs for the best healing outcome.
The thing we like the most is a floor-based tablet table that flips completely upside down. She can lie flat on her back on the bed and have the iPad directly over her face. She needs to have it so close it almost touches her nose, but it works for her and she’ll take a break and watch a television show or play a game for a while. It’s been a big part of getting her to lie down during the day and I’m very glad there was an option that met this particular need.
She also likes to draw with paper held on to it. She was leaning all the way over paper with her face close to the table before, but with this she can recline back and have paper at an angle and draw without leaning over at all. Tonight she was so happy doing this I thought we were going to run out of paper before she went to bed. She’s drawing all sorts of things that are things to her but aren’t those things to us until she tells us what she’s drawn.
The Big Boy Update: For Christmas day dinner last night my husband was making my son’s dinner plate. He had out the rectangular cafeteria-style plates the children use from time to time. As he was asking what he wanted, my son said, “how many compartments do I have?”
The Tiny Girl Chronicles: Over the past two days my daughter has been very interested in drawing snails. You might look at the drawing and say, “what is this?” to which she would say, “it’s a snail,” and you would then look at it and realize it sort of does look like a snail with a large shell. If you come over to visit, just ask for a snail and she’ll be glad to draw you one and then tell you what it’s name is. (They’re each have their own special name she makes up.)
We have been able to get her to start sleeping on her back, which she didn’t do before. That’s getting a lot of hours on her back each day. She also isn’t spending time leaning forward via different ways to handle artwork, eating, playing, etc. so we’re avoiding the bad direction as well. Overall, I hope it’s going to be what her retina and eye needs for the best healing outcome.
The thing we like the most is a floor-based tablet table that flips completely upside down. She can lie flat on her back on the bed and have the iPad directly over her face. She needs to have it so close it almost touches her nose, but it works for her and she’ll take a break and watch a television show or play a game for a while. It’s been a big part of getting her to lie down during the day and I’m very glad there was an option that met this particular need.
She also likes to draw with paper held on to it. She was leaning all the way over paper with her face close to the table before, but with this she can recline back and have paper at an angle and draw without leaning over at all. Tonight she was so happy doing this I thought we were going to run out of paper before she went to bed. She’s drawing all sorts of things that are things to her but aren’t those things to us until she tells us what she’s drawn.
The Big Boy Update: For Christmas day dinner last night my husband was making my son’s dinner plate. He had out the rectangular cafeteria-style plates the children use from time to time. As he was asking what he wanted, my son said, “how many compartments do I have?”
The Tiny Girl Chronicles: Over the past two days my daughter has been very interested in drawing snails. You might look at the drawing and say, “what is this?” to which she would say, “it’s a snail,” and you would then look at it and realize it sort of does look like a snail with a large shell. If you come over to visit, just ask for a snail and she’ll be glad to draw you one and then tell you what it’s name is. (They’re each have their own special name she makes up.)
Friday, December 25, 2015
Can’t Wait for Christmas
Today was Christmas day and our house was filled with all the hoopla you might expect for one containing two small children, two parents and four grandparents. It was a great day. We ended the day with our traditional Christmas Day Dinner which includes both family and friends. It’s always a good time and I’m always sad to see the night end. This year my mother and I worked on something different for the evening.
We came up with the idea last weekend to write a song together. I thought I could do the lyrics and my mother said she’d do the music when I’d finished the words. Yesterday we came together in our bonus room with my old keyboard and figured out the details of the song. Words were tweaked, melody was modified and the chorus was reconsidered. Together we got it completed and took a moments to practice here and there in preparation for tonight.
After dessert we called everyone into the living room and told them about our project, made some excuses about not being professional and we hoped they’d understand. And then we sang our song. I think we did fairly well considering it was our first song together. I will not be sharing the video or audio versions of us singing, but here are the lyrics:
Can’t wait For Christmas
Pile In the car, drive to the stand
Select a tree that’s tall and grand
Pick out a wreath to also buy
Tie on the car and wave goodbye
Drive back home unload the tree
Decorate for all to see
Dad, how much longer?
We just can’t wait.
Mom, say tomorrow is
Christmas day.
Boxes down from attic heights,
Dad hangs up the Christmas lights,
Lollipop tree sitting on the shelf,
Small hands fill it happy to help.
"May we have a lollipop, Mom?"
“Sure you can”, now run along.
Dad, how much longer?
We just can’t wait.
Mom, say tomorrow is
Christmas day.
Uncle Bob makes us fresh bread,
Nana ensures we’re all well fed.
Mimi sings us Christmas songs,
Mom chimes in and sings along.
Gramps preforms his magic tricks
We hope for snow for once that sticks.
Papa, how much longer?
We just can’t wait.
Mom, say tomorrow is
Christmas day.
When Christmas day finally arrives,
Happy children beam with big, round eyes.
Presents all around the tree,
Gleeful cries, “is that for me?”
handing out presents, unwrapping each toy,
Sharing memories of family and joy.
Mimi, how much longer?
We just can’t wait.
Mom, “guess what, kids? It’s
Christmas day!”
The Big Boy Update: My husband had an idea to get my son Skylander figures from Santa this year. Our children only get one thing each from Santa and it sits out, unwrapped for them to see when we go downstairs on Christmas morning. My son was so very excited by this most excellent of presents he didn’t want to open his other presents. We got him through a few more and then let him go take his new Skylander figures upstairs to try out in the Skylander video game.
The Tiny Girl Chronicles: My daughter was Santa’s helper this morning at Christmas. She brought presents to people and then helped them unwrap them if they asked for help. She made us smile all morning.
We came up with the idea last weekend to write a song together. I thought I could do the lyrics and my mother said she’d do the music when I’d finished the words. Yesterday we came together in our bonus room with my old keyboard and figured out the details of the song. Words were tweaked, melody was modified and the chorus was reconsidered. Together we got it completed and took a moments to practice here and there in preparation for tonight.
After dessert we called everyone into the living room and told them about our project, made some excuses about not being professional and we hoped they’d understand. And then we sang our song. I think we did fairly well considering it was our first song together. I will not be sharing the video or audio versions of us singing, but here are the lyrics:
Can’t wait For Christmas
Pile In the car, drive to the stand
Select a tree that’s tall and grand
Pick out a wreath to also buy
Tie on the car and wave goodbye
Drive back home unload the tree
Decorate for all to see
Dad, how much longer?
We just can’t wait.
Mom, say tomorrow is
Christmas day.
Boxes down from attic heights,
Dad hangs up the Christmas lights,
Lollipop tree sitting on the shelf,
Small hands fill it happy to help.
"May we have a lollipop, Mom?"
“Sure you can”, now run along.
Dad, how much longer?
We just can’t wait.
Mom, say tomorrow is
Christmas day.
Uncle Bob makes us fresh bread,
Nana ensures we’re all well fed.
Mimi sings us Christmas songs,
Mom chimes in and sings along.
Gramps preforms his magic tricks
We hope for snow for once that sticks.
Papa, how much longer?
We just can’t wait.
Mom, say tomorrow is
Christmas day.
When Christmas day finally arrives,
Happy children beam with big, round eyes.
Presents all around the tree,
Gleeful cries, “is that for me?”
handing out presents, unwrapping each toy,
Sharing memories of family and joy.
Mimi, how much longer?
We just can’t wait.
Mom, “guess what, kids? It’s
Christmas day!”
The Big Boy Update: My husband had an idea to get my son Skylander figures from Santa this year. Our children only get one thing each from Santa and it sits out, unwrapped for them to see when we go downstairs on Christmas morning. My son was so very excited by this most excellent of presents he didn’t want to open his other presents. We got him through a few more and then let him go take his new Skylander figures upstairs to try out in the Skylander video game.
The Tiny Girl Chronicles: My daughter was Santa’s helper this morning at Christmas. She brought presents to people and then helped them unwrap them if they asked for help. She made us smile all morning.
Doubly Organized
Today was busy at the house; my children got their Christmas present delivered at nine o’clock this morning. My daughter was interested in the delivery and set up of the bunk beds. My son had decided he’d like to watch Power Rangers on his iPad and avoided the mess in the room until it was all set up.
My daughter’s bed on the bottom is a full and my son’s is a twin on the top. Instead of a ladder, there are stairs on the side with a drawer under each of steps they can store things in. They both went to bed tonight in “envelopes” otherwise known as a made bed. Up until now they’ve been sleeping with a blanket as opposed to a sheet and comforter tucked in at the bottom. They both happily went to bed tonight. That may have been due to the whole Christmas thing in the morning, but either way, I think they’re happy with the new sleeping situation.
I’d been working on going through all the toys in the house. Toys and junk from birthday party favors, craft projects, items from school, etc., accumulate over time. Things move around and toys with multiple parts get separated. I’d gotten part-way through my organization/reduction/purging process and today I decided I needed to get it completed.
This involved removing a significant portion of the toys and other items from the areas in which the children played. Some of the things will be given to younger children, others will be put away for now and brought back out in a few months. The plan was to get through everything of theirs and put things into the “back closet” (as I call it) which is an unfinished storage area off the children’s bedroom.
I found a partner in my mother today and had a great time working with her. She taught me how to organize, but we haven’t had a chance to work together on a process in a long time. She and I went through everything and had an enjoyable time seeing the rooms cleaner and more organized.
We have the back closet to finish now, making final decisions on what stays and what goes. Cleaning and purging is always a cathartic activity for me.
The Big Boy Update: My son’s ear infection was bothering him a lot before my mother- and father-in-law got him some antibiotic. He thought he’d figured out how to solve the problem at one point and told them, “I must have a pimple in my ear. Just take the tweezers and pull it out.”
The Tiny Girl Chronicles: My daughter has been pretending she’s a dog. Today she wanted to be friends with our old, small dog. Our dog is very wary of the children and wasn’t so sure she wanted to be friends with my daughter the dog but she played along without growling. It was funny to watch my daughter bark while on all fours, trying to make friends with the dog.
My daughter’s bed on the bottom is a full and my son’s is a twin on the top. Instead of a ladder, there are stairs on the side with a drawer under each of steps they can store things in. They both went to bed tonight in “envelopes” otherwise known as a made bed. Up until now they’ve been sleeping with a blanket as opposed to a sheet and comforter tucked in at the bottom. They both happily went to bed tonight. That may have been due to the whole Christmas thing in the morning, but either way, I think they’re happy with the new sleeping situation.
I’d been working on going through all the toys in the house. Toys and junk from birthday party favors, craft projects, items from school, etc., accumulate over time. Things move around and toys with multiple parts get separated. I’d gotten part-way through my organization/reduction/purging process and today I decided I needed to get it completed.
This involved removing a significant portion of the toys and other items from the areas in which the children played. Some of the things will be given to younger children, others will be put away for now and brought back out in a few months. The plan was to get through everything of theirs and put things into the “back closet” (as I call it) which is an unfinished storage area off the children’s bedroom.
I found a partner in my mother today and had a great time working with her. She taught me how to organize, but we haven’t had a chance to work together on a process in a long time. She and I went through everything and had an enjoyable time seeing the rooms cleaner and more organized.
We have the back closet to finish now, making final decisions on what stays and what goes. Cleaning and purging is always a cathartic activity for me.
The Big Boy Update: My son’s ear infection was bothering him a lot before my mother- and father-in-law got him some antibiotic. He thought he’d figured out how to solve the problem at one point and told them, “I must have a pimple in my ear. Just take the tweezers and pull it out.”
The Tiny Girl Chronicles: My daughter has been pretending she’s a dog. Today she wanted to be friends with our old, small dog. Our dog is very wary of the children and wasn’t so sure she wanted to be friends with my daughter the dog but she played along without growling. It was funny to watch my daughter bark while on all fours, trying to make friends with the dog.
Wednesday, December 23, 2015
Action is the Most Essential Element to Success
While we were at the hospital in Detroit two weeks ago for my daughter’s evaluation I saw a poster with that phrase. I’ve been thinking about it ever since. My husband and I have vacillated between action inaction when it comes to my daughter’s eyes. We knew something was wrong and we trusted—still trust—the advice from the doctors we’ve been working with, but it’s been tough to know what path to take.
It’s been hard to watch my daughter’s vision situation get more dire and not do anything. At certain points we have taken action, but it feels like a lot of waiting and watching something be lost like a rock falling out of a boat adrift on the ocean.
I hope we’ve acted enough and when it was most important.
The Big Boy Update: I got to talk to my son on the phone yesterday after not seeing him for two days. He said, “if I had a super power I would come through the phone and give you a big hug.”
The Tiny Girl Chronicles: My daughter does not want us doing anything with her right eye involving visual eye tests. This is mostly because—I think—she doesn’t want to discuss it. She exclaims loudly, “I can’t see!” when you try to tell anything. I’m going to need some Dhruti advice on how to talk to her about what vision she now has in that eye.
It’s been hard to watch my daughter’s vision situation get more dire and not do anything. At certain points we have taken action, but it feels like a lot of waiting and watching something be lost like a rock falling out of a boat adrift on the ocean.
I hope we’ve acted enough and when it was most important.
The Big Boy Update: I got to talk to my son on the phone yesterday after not seeing him for two days. He said, “if I had a super power I would come through the phone and give you a big hug.”
The Tiny Girl Chronicles: My daughter does not want us doing anything with her right eye involving visual eye tests. This is mostly because—I think—she doesn’t want to discuss it. She exclaims loudly, “I can’t see!” when you try to tell anything. I’m going to need some Dhruti advice on how to talk to her about what vision she now has in that eye.
Tuesday, December 22, 2015
When Small Girls Say Cute Things
This is an extra post today about some of the things my daughter’s said over the past few weeks that I haven’t had a chance to down yet because I’ve been focused on the situation in her eyes.
Cool Shoes
Uncle Jonathan likes to do special things for the children from time to time. He took my son to see a movie this past weekend and before that, he took my daughter shopping. She came home with new sneakers. They are bright pink and purple and she loves them. She’s decided to call them her, “cool shoes” and she wears them all the time.
You’re Poop
Going to school one morning last week my son was having a very hard time. There was wailing and complaining and his window got rolled down with cold wind blowing in his face because he was so loud he needed to yell outside, I told him. He finally settled down at which point his sister said something that must have involved the word ‘poop’. My son immediately said in a loud voice, “mom, Reese said poop! Reese, you’re in trouble now!” My daughter very quietly and calmly said, “Greyson, you’re poop.” My son got angrier and she said again, “you’re poop” in the most calm voice that did nothing but enrage him. He tattled on her some more and she responded with the matter-of-fact declaration, “you’re poop, you’re poop, you’re poop.” I couldn’t help it, I sniggered in the front seat. My son yelled at me saying, “mom, it’s not funny!” I told him I had had a tickle in my nose.
Come On Car…
We were in Detroit yesterday morning heading to the hospital for my daughter’s eye surgery. We had just gotten in and we were all cold. My husband said, “come on car, get warmer” to which my daughter said, “dad, remember this car doesn’t talk.” She was right, it didn’t.
Unexpected Salad Intrusion
Last night I went to get a sandwich from the cafe at our hotel. I came back and my daughter wanted some of it. I handed her a quarter piece and as she brought it to her mouth she complained, “hey, is there salad in here?” She loves salad and requests it frequently, but apparently lettuce and tomato in a sandwich are unwelcome.
I didn’t Tell Them
This one is the only sad one I’m putting in, mostly because I don’t have sad things to write about that my daughter says. I’ve had this comment in my list for probably over two months now and I’ve been avoiding putting it in because it shows my daughter is aware of what’s going on, possibly painfully aware. We were talking about who she played with at school. She said in a quiet voice, “I didn’t want to tell the friends at school.” I asked her what she didn’t want to tell them and she said, “that I can’t see.”
What Island?
As I write this, we’re driving through West Virginia on the way home from Detroit. My daughter had been sleeping for some time and when she woke up she said to dad, “what Island are we on now?”
Cool Shoes
Uncle Jonathan likes to do special things for the children from time to time. He took my son to see a movie this past weekend and before that, he took my daughter shopping. She came home with new sneakers. They are bright pink and purple and she loves them. She’s decided to call them her, “cool shoes” and she wears them all the time.
You’re Poop
Going to school one morning last week my son was having a very hard time. There was wailing and complaining and his window got rolled down with cold wind blowing in his face because he was so loud he needed to yell outside, I told him. He finally settled down at which point his sister said something that must have involved the word ‘poop’. My son immediately said in a loud voice, “mom, Reese said poop! Reese, you’re in trouble now!” My daughter very quietly and calmly said, “Greyson, you’re poop.” My son got angrier and she said again, “you’re poop” in the most calm voice that did nothing but enrage him. He tattled on her some more and she responded with the matter-of-fact declaration, “you’re poop, you’re poop, you’re poop.” I couldn’t help it, I sniggered in the front seat. My son yelled at me saying, “mom, it’s not funny!” I told him I had had a tickle in my nose.
Come On Car…
We were in Detroit yesterday morning heading to the hospital for my daughter’s eye surgery. We had just gotten in and we were all cold. My husband said, “come on car, get warmer” to which my daughter said, “dad, remember this car doesn’t talk.” She was right, it didn’t.
Unexpected Salad Intrusion
Last night I went to get a sandwich from the cafe at our hotel. I came back and my daughter wanted some of it. I handed her a quarter piece and as she brought it to her mouth she complained, “hey, is there salad in here?” She loves salad and requests it frequently, but apparently lettuce and tomato in a sandwich are unwelcome.
I didn’t Tell Them
This one is the only sad one I’m putting in, mostly because I don’t have sad things to write about that my daughter says. I’ve had this comment in my list for probably over two months now and I’ve been avoiding putting it in because it shows my daughter is aware of what’s going on, possibly painfully aware. We were talking about who she played with at school. She said in a quiet voice, “I didn’t want to tell the friends at school.” I asked her what she didn’t want to tell them and she said, “that I can’t see.”
What Island?
As I write this, we’re driving through West Virginia on the way home from Detroit. My daughter had been sleeping for some time and when she woke up she said to dad, “what Island are we on now?”
+/- 20
My husband, daughter and I returned to her retinal surgeon’s office this morning for him to check her eye and hopefully send us home. I wasn’t sure what to expect when they pulled the bandage off but I was pleasantly surprised to see an eye that looked almost normal, if a bit swollen. We’d had a very good night with my daughter being willing to sleep on her back when reminded. I set a recurring alarm and checked on her through the night.
Dr. Trese was able to look into her eye while she sat in a chair and said her eye, “looks remarkably good.” He could even see some circulation present. He was happy with the way things appeared one day after surgery. He did a test, having her cover her left eye to see if she could see him waving his hand with her right eye. She was able to see it, but he told us he wasn’t altogether sure she didn’t peek with her left eye. He suggested we do tests like this from time to time to see how things are improving.
We spoke with one of his Fellows as and asked some questions. She needs to remain on her back as much as possible for the next four to five weeks and should keep activity levels low. I asked him for some specifics about what she could potentially see without a natural lens and he gave us some details.
A vision prescription is measured in a plus or minus number. For instance, my husband is nearsighted and has a +1 prescription for contact lenses so he can see distance. We have a friend who has spoken about her nearsightedness to me before and has very thick glasses. She has a +12.5 prescription and says without her glasses, she can only see things very close up. Without a natural lens and without any other issues (pretend we have a happy, normal retina for the purposes of this discussion) my daughter would have a +/- 20 prescription.
I hate doing the reading on the Web (not the Internet, but that’s a whole other discussion on misused terms) but in this case I wanted to understand what she might see from people who have missing lenses. One person said everything was so blurry the only information he could discern was colors and overall shapes. One person had missing lenses that had been corrected well with glasses and could see 20/70 in one eye and 20/20 in the other.
So if her retina heals and can transmit optical signals, she’s going to need one hell of a thick lens in a pair of glasses for her right eye. My friend with the +12.5 prescription told me, “good news is the Germans are wizards with optical glass, so the lens keep getting thinner.” I don’t know about contact lenses for a small child but since we don’t even know the prognosis on the retina, we’re going to table this for a future discussion.
What worries me about the loss of the lens is the probable need to perform a similar surgery on her left eye in the future. The pressure in that eye continues to be zero and it is possible maybe even probable the eye will continue to decline in health if nothing is done. What if she loses the lens in that eye? I’m suffering from large bouts of fear that she may lose the only functional vision she has left by either doing nothing or doing something.
We’re on the way home now, planning to get in before midnight. My daughter continues to be compliant and even understanding with everything including lots of eye drops, wearing a metal eye patch, having to lie on her back, not jumping or hopping or running, and not messing with the covered eye. We’re very fortunate she’s so understanding.
The Big Boy Update: My husband and I are going to have to figure out what to do to spend time with my son so he knows he’s as important and special to us as his sister. This isn’t a “fun” trip or a “vacation” even though we’re trying to make it seem so to his sister. But to him, it’s both parents spending time with his sister and not him. I’m looking forward to seeing him and giving him a big hug and kiss when we get in.
The Tiny Girl Chronicles: My daughter is very excited to be sitting in the front seat of the car. The passenger seat could recline more than the second row seats so she’s relaxing and listening to a Winnie the Pooh audio book as we drive towards home.
Monday, December 21, 2015
Right Eye Surgery
Today was eye surgery day for my daughter. My husband and I didn’t want this to happen. We didn’t want to be in Detroit facing a situation in which we had no other choice but dramatic eye surgery to try and save my daughter’s vision, but that’s where we ended up so surgery is what we did.
Of her two eyes, her left eye is her “good” one, meaning she can see out of it whereas the right eye can possibly only see light now because of the overwhelming insult it’s sustained over the past four months. What started it all and what happened to get us here is still not clear, but we know it’s related to her abnormally formed eyes leading to a predisposition for something to happen. Because she gets most visual information from her left eye it was important to keep that untouched for now so today’s surgery was on her right eye.
There is a lot I can’t adequately explain here because, as Dr. Trese casually said, you’d need a five-year fellowship as a retinal specialist to really understand. So bear with me as do the best I can to give you the gist as I understand it.
The procedure first involved visualizing her eye from the interior via surgical tools. The pressure has been so low in her eye that the initial step was to add gas into it to get a better idea of what was going on. With the gas in place they were able to remove a portion of the vitreous from the back of her eye.
When they removed the vitreous they were able to peel some scar tissue from the front of the retina (they did not go behind the retina at all.) Good news here is there appeared to be no tears in the retina which would have indicated death of the cells in that area. Better news is as they worked in her eye, the folds in the retina began to be less-pronounced, flattening out as they removed frontal scar tissue.
They then removed the gas, adding a specific type of perflurocarbon liquid in her eye, PFO, a heavy substance in comparison to the vitreous. Next they injected silicon oil. As they added the PFO and silicon oil the retina began to unfold more. It’s not complexly opened up, but it opened up a lot during the procedure, looking even better later on as they were finishing up.
To back up in time a bit, the pressure in my daughter’s eyes has been low—too low. As the pressure decreased in my daughter’s eyes they became smaller. The radiologist doing her recent brain MRI reading even commented how her eyes appeared to be smaller than the scan in September. Dr. Trese said the folds in her retina may have been compounded in part by the reduction in her eye size coupled with the retinal detachment already present.
I want to circle back to how many substances have now been put into my daughter’s eyes, because it’s impressive. There was a gas, which was subsequently removed. Next there’ the PFO, which acts as a coating around the silicon oil in the back of her eye. In the front of her eye she has a Healon polymer solution to stabilize it. Healon is preferred for contact with the cornea over silicon oil. So my daughter now has three additional substances in her eye, helping it hold itself together and, hopefully, heal and return some vision to it.
During the procedure my daughter’s lens became an obstacle and they had to remove it. I can’t decide if I’m devastated about this or relieved so I’m going to have to side track and talk about her lenses for a bit. She has (had) and almost spherical lens instead of a normal, lozenge-shaped one. The lens is suspended in place by a lens capsule that’s connected all around by zonules. Dr. Trese was concerned her zonules wold be fragile and the lens would become dislodged. If that happened, they would have to remove it.
It didn’t detach, but it was an obstacle to their procedure so they removed it. But is it a bad thing? If you know anyone who’s had cataract surgery, they don’t have their lenses anymore. They were broken up and removed through a small incision in the side of the eye. Unlike cataract patients though, my daughter doesn’t have an artificial lens replaced in the void where the lens was.
It turns out the lens was measurably more cloudy than it was even last week when Dr. Trese looked at it. This clouding would have continued to progress with the hypotony (low pressure) in her eyes. The question is, can an artificial lens be implanted and/or does she need one? Yes, one can be implanted but Dr. Trese suggests it not be done until she’s at least twenty-years-old. The interesting thing is, you don’t need a lens to see. I had read about this several years ago when I had eye surgery so I wasn’t as upset as I might have otherwise been.
Most people don’t know, but I had my lenses removed a few years ago. I didn’t have cataracts, but I elected to have a “clear lens exchange” for artificial lenses to correct my vision. I’m quite happy with my artificial lenses and should’t need glasses as I get older because my artificial lenses won’t harden, causing me to need reading glasses.
In addition, you don’t need artificial lenses to correct vision without an inter-ocular lens, you can get glasses or contacts that do the same thing. So removing her lens may have been a good step. There are drawbacks though. The lens helps to maintain ocular pressure and, as we all know, she has an issue with low pressure. The other concern is the lens is a barrier that helps keep the silicone oil in the back of the eye (where is needs to stay). In order to help prevent this, they left the anterior (front) portion of the lens capsule in place. While her zonules may have been delicate, her lens capsule was unexpectedly sturdy. The posterior (back) portion of the lens capsule was stuck to the retina in places so they peeled it off and removed what was necessary.
The hope after surgery today is that the retina will settle down under the now-normal pressure in her eye. She is measuring 12-13 which is a huge improvement from what the zero reading she’s been having for the past months.
Her eye anatomically looks much better now. The silicon oil and PFO should remain in place. The Healon will permeate out, but only as fast as her eye’s ciliary body produces fluid. Dr. Trese believes whatever the original insult was that occurred in my daughter’s eyes, damaged the ciliary bodies and they likely won’t ever return to producing much fluid. With low fluid production, the Healon may remain in her eyes for some time.
Overall, what was done today to my daughter’s eyes was a temporizing process that will give the doctors an idea how her eye will behave with appropriate pressure. As far as returning sight in her right eye, it will be four months until we really know because regeneration of retinal cells is a slow process.
What do we do now that we have a small child with an eye patch on her fight eye? First of all, we need to keep her on her back as much as possible for the next five weeks. Wait, what?! I know, right? I have a new definition of “impossible” in mind. Unbelievably though, my daughter has been willing to lie on her back to do most things since we were released from the hospital this morning, she’s been commented, “I need to lie on my back” when she remembers.
We don’t have to have her on her back 100% of the time, but that PFO and silicon oil needs to rest on the back of her retina, weighing it down as opposed to pressing on the front of her eye. Guess who likes to sleep facing down? Guess who spends lots of time leaning forward to eat and watch her iPad? So we have challenges.
But we have solutions too. we’ve ordered a special iPad stand that holds an iPad in place upside down so she can lie on her back and play games or watch videos at the three-inch distance she has to have to be able to see anything with her unpatched left eye. We also were able to recline the chair in the car so she’s fairly close to lying down for our long ride home tomorrow after seeing her doctor in the morning.
And on the personal side of things, we had several comments today that made me smile and tear up. In the pre-op room while we waited for my daughter to be called back, she decided we needed to play, “Ring Around the Rosy.” She put pages she’d colored in a circle and got my husband and me to walk around in a circle and sit on a drawing when “we all fall down” came around. We were having a great time when one of the nurses stuck her head in and said, “she is such a breath of fresh air.”
The thing that made me cry was an unexpected text message from our pediatric ophthalmologist who has been with us since the day we realized something was going wrong with my daughter’s eyes. She remembered my daughter’s surgery was today and sent her best wishes for a positive result. What doctor does that? She has been our biggest advocate throughout this whole process and I cannot adequately express our gratitude to her.
The Big Boy Update: My son has an ear infection. He’s with Nana and Papa and they have been taking care of him. We realized (a bit too late) that they’d gotten a prescription for amoxicillin that he was allergic to. They went back and got a different medication for him before they filled the first prescription. It was a hassle with a sick and unhappy child and I’m sorry we weren’t there to help. Other than that, I think he’s having a great time with them. I was just sent pictures of him having fondue toasting the evening with red juice in a wine glass.
The Tiny Girl Chronicles: Before surgery my daughter needed three rounds of eye drops. One older nurse came in for the third round of eye drops and I told her, “she’s good at doing these, hand her a tissue and she’ll help.” The nurse couldn’t believe it when my daughter lay back, held her eye open for the drop and then patted it with the tissue before holding the second eye open. She said, “I’ve been working with Dr. Trese for twenty-five years and I’ve never seen a child do that before. We’re accustomed to needing three of us to get drops in to a child her age.” I told her it was my daughter who decided that was how she wanted to do the drops. I am proud of her every single day.
Of her two eyes, her left eye is her “good” one, meaning she can see out of it whereas the right eye can possibly only see light now because of the overwhelming insult it’s sustained over the past four months. What started it all and what happened to get us here is still not clear, but we know it’s related to her abnormally formed eyes leading to a predisposition for something to happen. Because she gets most visual information from her left eye it was important to keep that untouched for now so today’s surgery was on her right eye.
There is a lot I can’t adequately explain here because, as Dr. Trese casually said, you’d need a five-year fellowship as a retinal specialist to really understand. So bear with me as do the best I can to give you the gist as I understand it.
The procedure first involved visualizing her eye from the interior via surgical tools. The pressure has been so low in her eye that the initial step was to add gas into it to get a better idea of what was going on. With the gas in place they were able to remove a portion of the vitreous from the back of her eye.
When they removed the vitreous they were able to peel some scar tissue from the front of the retina (they did not go behind the retina at all.) Good news here is there appeared to be no tears in the retina which would have indicated death of the cells in that area. Better news is as they worked in her eye, the folds in the retina began to be less-pronounced, flattening out as they removed frontal scar tissue.
They then removed the gas, adding a specific type of perflurocarbon liquid in her eye, PFO, a heavy substance in comparison to the vitreous. Next they injected silicon oil. As they added the PFO and silicon oil the retina began to unfold more. It’s not complexly opened up, but it opened up a lot during the procedure, looking even better later on as they were finishing up.
To back up in time a bit, the pressure in my daughter’s eyes has been low—too low. As the pressure decreased in my daughter’s eyes they became smaller. The radiologist doing her recent brain MRI reading even commented how her eyes appeared to be smaller than the scan in September. Dr. Trese said the folds in her retina may have been compounded in part by the reduction in her eye size coupled with the retinal detachment already present.
I want to circle back to how many substances have now been put into my daughter’s eyes, because it’s impressive. There was a gas, which was subsequently removed. Next there’ the PFO, which acts as a coating around the silicon oil in the back of her eye. In the front of her eye she has a Healon polymer solution to stabilize it. Healon is preferred for contact with the cornea over silicon oil. So my daughter now has three additional substances in her eye, helping it hold itself together and, hopefully, heal and return some vision to it.
During the procedure my daughter’s lens became an obstacle and they had to remove it. I can’t decide if I’m devastated about this or relieved so I’m going to have to side track and talk about her lenses for a bit. She has (had) and almost spherical lens instead of a normal, lozenge-shaped one. The lens is suspended in place by a lens capsule that’s connected all around by zonules. Dr. Trese was concerned her zonules wold be fragile and the lens would become dislodged. If that happened, they would have to remove it.
It didn’t detach, but it was an obstacle to their procedure so they removed it. But is it a bad thing? If you know anyone who’s had cataract surgery, they don’t have their lenses anymore. They were broken up and removed through a small incision in the side of the eye. Unlike cataract patients though, my daughter doesn’t have an artificial lens replaced in the void where the lens was.
It turns out the lens was measurably more cloudy than it was even last week when Dr. Trese looked at it. This clouding would have continued to progress with the hypotony (low pressure) in her eyes. The question is, can an artificial lens be implanted and/or does she need one? Yes, one can be implanted but Dr. Trese suggests it not be done until she’s at least twenty-years-old. The interesting thing is, you don’t need a lens to see. I had read about this several years ago when I had eye surgery so I wasn’t as upset as I might have otherwise been.
Most people don’t know, but I had my lenses removed a few years ago. I didn’t have cataracts, but I elected to have a “clear lens exchange” for artificial lenses to correct my vision. I’m quite happy with my artificial lenses and should’t need glasses as I get older because my artificial lenses won’t harden, causing me to need reading glasses.
In addition, you don’t need artificial lenses to correct vision without an inter-ocular lens, you can get glasses or contacts that do the same thing. So removing her lens may have been a good step. There are drawbacks though. The lens helps to maintain ocular pressure and, as we all know, she has an issue with low pressure. The other concern is the lens is a barrier that helps keep the silicone oil in the back of the eye (where is needs to stay). In order to help prevent this, they left the anterior (front) portion of the lens capsule in place. While her zonules may have been delicate, her lens capsule was unexpectedly sturdy. The posterior (back) portion of the lens capsule was stuck to the retina in places so they peeled it off and removed what was necessary.
The hope after surgery today is that the retina will settle down under the now-normal pressure in her eye. She is measuring 12-13 which is a huge improvement from what the zero reading she’s been having for the past months.
Her eye anatomically looks much better now. The silicon oil and PFO should remain in place. The Healon will permeate out, but only as fast as her eye’s ciliary body produces fluid. Dr. Trese believes whatever the original insult was that occurred in my daughter’s eyes, damaged the ciliary bodies and they likely won’t ever return to producing much fluid. With low fluid production, the Healon may remain in her eyes for some time.
Overall, what was done today to my daughter’s eyes was a temporizing process that will give the doctors an idea how her eye will behave with appropriate pressure. As far as returning sight in her right eye, it will be four months until we really know because regeneration of retinal cells is a slow process.
What do we do now that we have a small child with an eye patch on her fight eye? First of all, we need to keep her on her back as much as possible for the next five weeks. Wait, what?! I know, right? I have a new definition of “impossible” in mind. Unbelievably though, my daughter has been willing to lie on her back to do most things since we were released from the hospital this morning, she’s been commented, “I need to lie on my back” when she remembers.
We don’t have to have her on her back 100% of the time, but that PFO and silicon oil needs to rest on the back of her retina, weighing it down as opposed to pressing on the front of her eye. Guess who likes to sleep facing down? Guess who spends lots of time leaning forward to eat and watch her iPad? So we have challenges.
But we have solutions too. we’ve ordered a special iPad stand that holds an iPad in place upside down so she can lie on her back and play games or watch videos at the three-inch distance she has to have to be able to see anything with her unpatched left eye. We also were able to recline the chair in the car so she’s fairly close to lying down for our long ride home tomorrow after seeing her doctor in the morning.
And on the personal side of things, we had several comments today that made me smile and tear up. In the pre-op room while we waited for my daughter to be called back, she decided we needed to play, “Ring Around the Rosy.” She put pages she’d colored in a circle and got my husband and me to walk around in a circle and sit on a drawing when “we all fall down” came around. We were having a great time when one of the nurses stuck her head in and said, “she is such a breath of fresh air.”
The thing that made me cry was an unexpected text message from our pediatric ophthalmologist who has been with us since the day we realized something was going wrong with my daughter’s eyes. She remembered my daughter’s surgery was today and sent her best wishes for a positive result. What doctor does that? She has been our biggest advocate throughout this whole process and I cannot adequately express our gratitude to her.
The Big Boy Update: My son has an ear infection. He’s with Nana and Papa and they have been taking care of him. We realized (a bit too late) that they’d gotten a prescription for amoxicillin that he was allergic to. They went back and got a different medication for him before they filled the first prescription. It was a hassle with a sick and unhappy child and I’m sorry we weren’t there to help. Other than that, I think he’s having a great time with them. I was just sent pictures of him having fondue toasting the evening with red juice in a wine glass.
The Tiny Girl Chronicles: Before surgery my daughter needed three rounds of eye drops. One older nurse came in for the third round of eye drops and I told her, “she’s good at doing these, hand her a tissue and she’ll help.” The nurse couldn’t believe it when my daughter lay back, held her eye open for the drop and then patted it with the tissue before holding the second eye open. She said, “I’ve been working with Dr. Trese for twenty-five years and I’ve never seen a child do that before. We’re accustomed to needing three of us to get drops in to a child her age.” I told her it was my daughter who decided that was how she wanted to do the drops. I am proud of her every single day.
Sunday, December 20, 2015
Words Left Unsaid
My husband and I realized we were going to need some guidance when we found out we’d be returning to Detroit for surgery. The recovery may be long and difficult and there may be more surgeries in the future. How do you tell a four-year-old child what’s going to happen? How do you prepare her? What do you tell and what don’t you mention? We really didn’t know.
Fortunately, we have Mrs. Chocolate. Did I mention my daughter’s play therapist (that she LOVES) has many of her students and children call her Mrs. Chocolate? She picked the name because she loves chocolate. We introduced her to my daughter as Dhruti (her first name) and my daughter likes calling her by that name so she’s Dhruti to us.
I called Dhruti from Detroit last week and told her the news. She said she could meet with us when we got back and she could help us talk to our daughter in a way she would understand. We did meet with her and that one hour meeting gave me some peace and understanding because I now know more about how a young child handles and processes information. We have a plan and we feel much better about how to talk to her. Here’s what she told us:
She said my daughter doesn’t have a concept of what it means to have surgery. Even though she knows dad had hernia surgery recently, it’s an abstract concept to her. Her level of understand is that dad went to a hospital because something was wrong with him and he saw a doctor. The doctor fixed him. That’s what surgery looks like to her.
Talking about procedural aspects of what she will be going through are all she needs to know. Saying, “you’re going to the hospital and your doctor will do surgery on your eye. He’ll do what doctor’s do to make your eye better” That’s it. That’s all she needs to know.
Don’t tell her more than two days before about anything that’s happening. We didn’t tell her (or prepare her) for the IV infusions of steroids she had for the last three days in preparation for the surgery. We just told her right before that we were going to the hospital to get an infusion. She was okay with knowing just before.
She’s going to begin to try and make the abstract concepts we tell her (surgery, eye patch, recovery, long trip, hospital, etc.) and try and make them concrete. The process of doing that will be very anxiety provoking for her. We want less anxiety for her so she’s on a need to know basis for now.
We’re not preparing her for afterwards or explaining too much. We want her to ask questions but if she’s too busy processing all we’ve told her she won’t be able to ask questions. We need those questions because they will be the biggest indicator of how she’s handling the situation.
Dhruti had said something about a month ago that I wrote down and have been thinking about ever since. She said, “Stress is not an emotion and shouldn’t be in the vocabulary of a four-year-old. Worry is an emotion. Stress is a psychological manifestation of worry.” We’re going to try and keep her worry level low and prevent as much stress as we can.
Dhruti also gave us some other information we found very useful. We talked about having her use the iPad because she can pull it very close and watch shows, movies and play games. We were worried about “screen time” but it seems to be helpful to her.
What she told us was that at her age, she’s still developing at the brain stem level which is processing sensory input. That development continues until about age five. For her, screen time has a positive impact on her instead of a negative one because of the visual deficiency. It’s a technological numbing agent for her other senses. Because she’s lost the majority of her sight, all her other senses are in a heightened state right now. She needs a chance for those senses to be able to relax and “go offline” and watching a show is helpful as her brain copes.
She told us sighted people see first then the brain processes afterwards. Typically you see, then think about it and then experience the thing. Non-sighted children experience things first. She’s going through a revolution in how she experiences the world and it may well be exhausting to her. So we’re giving her the iPad whenever she wants it. She doesn’t ask for it a lot, and when she does, she watches pretty good educational children’s shows. She tells us about what she learns afterwards.
The Big Boy Update: We drove by a strip mall a few days ago. In front of one of the stores was a large, artificial Christmas tree. My son said, “look at that giant tree. Everybody in North America comes to that tree.” (We can thank our Montessori school for his knowledge about North America.)
The Tiny Girl Chronicles: My daughter was filling in a coloring page the other day and had selected the green marker after dabbling with some of the other colors. Saw was vigorously coloring in green when my husband looked over and said, “don’t use all green.” She didn’t bother to look up as she replied, “but that’s just how it goes.” A few minutes later she lifted up the picture and said, “taadaa, he’s all green!”
Fortunately, we have Mrs. Chocolate. Did I mention my daughter’s play therapist (that she LOVES) has many of her students and children call her Mrs. Chocolate? She picked the name because she loves chocolate. We introduced her to my daughter as Dhruti (her first name) and my daughter likes calling her by that name so she’s Dhruti to us.
I called Dhruti from Detroit last week and told her the news. She said she could meet with us when we got back and she could help us talk to our daughter in a way she would understand. We did meet with her and that one hour meeting gave me some peace and understanding because I now know more about how a young child handles and processes information. We have a plan and we feel much better about how to talk to her. Here’s what she told us:
She said my daughter doesn’t have a concept of what it means to have surgery. Even though she knows dad had hernia surgery recently, it’s an abstract concept to her. Her level of understand is that dad went to a hospital because something was wrong with him and he saw a doctor. The doctor fixed him. That’s what surgery looks like to her.
Talking about procedural aspects of what she will be going through are all she needs to know. Saying, “you’re going to the hospital and your doctor will do surgery on your eye. He’ll do what doctor’s do to make your eye better” That’s it. That’s all she needs to know.
Don’t tell her more than two days before about anything that’s happening. We didn’t tell her (or prepare her) for the IV infusions of steroids she had for the last three days in preparation for the surgery. We just told her right before that we were going to the hospital to get an infusion. She was okay with knowing just before.
She’s going to begin to try and make the abstract concepts we tell her (surgery, eye patch, recovery, long trip, hospital, etc.) and try and make them concrete. The process of doing that will be very anxiety provoking for her. We want less anxiety for her so she’s on a need to know basis for now.
We’re not preparing her for afterwards or explaining too much. We want her to ask questions but if she’s too busy processing all we’ve told her she won’t be able to ask questions. We need those questions because they will be the biggest indicator of how she’s handling the situation.
Dhruti had said something about a month ago that I wrote down and have been thinking about ever since. She said, “Stress is not an emotion and shouldn’t be in the vocabulary of a four-year-old. Worry is an emotion. Stress is a psychological manifestation of worry.” We’re going to try and keep her worry level low and prevent as much stress as we can.
Dhruti also gave us some other information we found very useful. We talked about having her use the iPad because she can pull it very close and watch shows, movies and play games. We were worried about “screen time” but it seems to be helpful to her.
What she told us was that at her age, she’s still developing at the brain stem level which is processing sensory input. That development continues until about age five. For her, screen time has a positive impact on her instead of a negative one because of the visual deficiency. It’s a technological numbing agent for her other senses. Because she’s lost the majority of her sight, all her other senses are in a heightened state right now. She needs a chance for those senses to be able to relax and “go offline” and watching a show is helpful as her brain copes.
She told us sighted people see first then the brain processes afterwards. Typically you see, then think about it and then experience the thing. Non-sighted children experience things first. She’s going through a revolution in how she experiences the world and it may well be exhausting to her. So we’re giving her the iPad whenever she wants it. She doesn’t ask for it a lot, and when she does, she watches pretty good educational children’s shows. She tells us about what she learns afterwards.
The Big Boy Update: We drove by a strip mall a few days ago. In front of one of the stores was a large, artificial Christmas tree. My son said, “look at that giant tree. Everybody in North America comes to that tree.” (We can thank our Montessori school for his knowledge about North America.)
The Tiny Girl Chronicles: My daughter was filling in a coloring page the other day and had selected the green marker after dabbling with some of the other colors. Saw was vigorously coloring in green when my husband looked over and said, “don’t use all green.” She didn’t bother to look up as she replied, “but that’s just how it goes.” A few minutes later she lifted up the picture and said, “taadaa, he’s all green!”
Saturday, December 19, 2015
Baseline Happy
I don’t even know what I’m going to write about tonight. Usually, when things are more normal in our lives, I have things I want to say. It’s gotten to be a bit of a habit or maybe it’s a dependency thing for me to write these posts. I mostly want to write them for me. I’m still not completely comfortable with people reading what I write so I pretend I’m writing to some large storage device somewhere in a data warehouse that no one knows about. It’s sort of like an X-Files episode.
Today, I’m just going to ramble. There are so many things running through my head that I need to just dump whatever’s coming to the surface right now and get it over with. Writing is cathartic in that way.
I’ve had some migraines lately. I’m not surprised. I get them infrequently but when I do I can usually point to the reason why. Today, right now in our lives, my husband and I have a lot to think about. We can picture the future for my daughter. We can see the tragedy in her vision loss. We can imagine the growing darkness and lack of clarity she’s having to deal with and it’s frightening to think about. It’s crushingly sad and depressing. It’s migraine material, thinking about all those implications.
I’ve never thought about sight the way I’m thinking about it now. Everything we do is based on sight. I never realized how much we use words like “look” and “see” in everything we do. Sight is pivotal in so many things in life.
There was a party tonight I missed. I was hosting our neighborhood luminary event my running buddy and I coordinated. We spent a lot of the day at the clubhouse after weeks of preparation and handed out almost fourteen-hundred luminary packets with sand. Afterwards, I was going to leave the neighborhood and miss the lit luminaries because we had a Chinese Dinner we’d bought at our school auction. This meal is at the home of one of our teachers. Her husband makes a traditional Chinese meal with more dishes than people at the table. It’s something you don’t want to miss. I missed it.
I was overloaded with the event and the need to pack and get ready to depart for several days. I’m sorry I missed it, but truthfully, I don’t know that I was emotionally prepared to go to the event. It’s so, so, SO wonderful to have people come up to you and hug you and tell you they’re there for you if you need anything. It’s so heart warming to know we have so many friends that care. It’s also draining, re-thinking about the sadness going on in my daughter’s eyes. I wasn’t sure I could do another event tonight.
The thing is, I don’t mind explaining the situation. I’m good at explaining. I was a teacher and making things easy to understand is what I do. But as much as I don’t mind telling people about tit, every time I do adds to my sadness. I can’t explain it. If you’re reading this, I’m not saying don’t ask. It makes me smile inside every time I talk to someone because I know they’re there for us.
I don’t know what other people’s mental temperaments are, but I think I’d describe myself as, “Baseline Happy”. Without anything specific inserting itself into my life, I’m pretty much happy all the time. I have a great family, we have fantastic friends, we don’t have financial issues and until just recently, there we no health mentally debilitating health problems.
Even now, if I’m not lying awake in bed at night, unable to get to sleep because I’m trying to picture my daughter’s future, I’m a happy person. If you talk to my husband he might tell you I’m picky as hell, always like to be right and am easily irritated. Be that as it may, I’m still happy.
Am I happy now? Overall in life, yes. But my daughter’s eyes have made happy a lot harder to find lately.
The Big Boy Update: I told my son about the activity we were going to do when we got home. He replied in a cranky voice, “I don’t want to do that. I deleted that.” (Guess who’s been deleting apps on the iPad in the hopes there will be room for new games?
The Tiny Girl Chronicles: My daughter kept asking to be put into underpants for bed. With the eye situation coming on at the end of August we decided to not move her to underwear. She continued to tell us, “my diaper is dry.” in the mornings so a few weeks ago we gave underpants a go. After all that wetting of her pants earlier his year, suddenly she has it completely under control. She hasn’t wet the bed yet.
Today, I’m just going to ramble. There are so many things running through my head that I need to just dump whatever’s coming to the surface right now and get it over with. Writing is cathartic in that way.
I’ve had some migraines lately. I’m not surprised. I get them infrequently but when I do I can usually point to the reason why. Today, right now in our lives, my husband and I have a lot to think about. We can picture the future for my daughter. We can see the tragedy in her vision loss. We can imagine the growing darkness and lack of clarity she’s having to deal with and it’s frightening to think about. It’s crushingly sad and depressing. It’s migraine material, thinking about all those implications.
I’ve never thought about sight the way I’m thinking about it now. Everything we do is based on sight. I never realized how much we use words like “look” and “see” in everything we do. Sight is pivotal in so many things in life.
There was a party tonight I missed. I was hosting our neighborhood luminary event my running buddy and I coordinated. We spent a lot of the day at the clubhouse after weeks of preparation and handed out almost fourteen-hundred luminary packets with sand. Afterwards, I was going to leave the neighborhood and miss the lit luminaries because we had a Chinese Dinner we’d bought at our school auction. This meal is at the home of one of our teachers. Her husband makes a traditional Chinese meal with more dishes than people at the table. It’s something you don’t want to miss. I missed it.
I was overloaded with the event and the need to pack and get ready to depart for several days. I’m sorry I missed it, but truthfully, I don’t know that I was emotionally prepared to go to the event. It’s so, so, SO wonderful to have people come up to you and hug you and tell you they’re there for you if you need anything. It’s so heart warming to know we have so many friends that care. It’s also draining, re-thinking about the sadness going on in my daughter’s eyes. I wasn’t sure I could do another event tonight.
The thing is, I don’t mind explaining the situation. I’m good at explaining. I was a teacher and making things easy to understand is what I do. But as much as I don’t mind telling people about tit, every time I do adds to my sadness. I can’t explain it. If you’re reading this, I’m not saying don’t ask. It makes me smile inside every time I talk to someone because I know they’re there for us.
I don’t know what other people’s mental temperaments are, but I think I’d describe myself as, “Baseline Happy”. Without anything specific inserting itself into my life, I’m pretty much happy all the time. I have a great family, we have fantastic friends, we don’t have financial issues and until just recently, there we no health mentally debilitating health problems.
Even now, if I’m not lying awake in bed at night, unable to get to sleep because I’m trying to picture my daughter’s future, I’m a happy person. If you talk to my husband he might tell you I’m picky as hell, always like to be right and am easily irritated. Be that as it may, I’m still happy.
Am I happy now? Overall in life, yes. But my daughter’s eyes have made happy a lot harder to find lately.
The Big Boy Update: I told my son about the activity we were going to do when we got home. He replied in a cranky voice, “I don’t want to do that. I deleted that.” (Guess who’s been deleting apps on the iPad in the hopes there will be room for new games?
The Tiny Girl Chronicles: My daughter kept asking to be put into underpants for bed. With the eye situation coming on at the end of August we decided to not move her to underwear. She continued to tell us, “my diaper is dry.” in the mornings so a few weeks ago we gave underpants a go. After all that wetting of her pants earlier his year, suddenly she has it completely under control. She hasn’t wet the bed yet.
Friday, December 18, 2015
To the Right is Only Light
We did a test where we put a patch over my daughter’s right eye to see if she was able to still function somewhat visually the other day. Right after my husband put the patch on her right eye, she got on her tricycle and speedily pedaled around the house without running into anything.
Today, we decided to patch the left eye to see what she could discern with the right. We knew the left was dominant but we hoped the right was giving her some information, possibly a lot of information. She resisted. She really didn’t want a patch on her left eye but she let us do so for only a minute.
She can’t see in the right eye. Dr. Trese did a test and she can discern light, but it appears she’s lost all the vision in the right except light. She let us do another test after dinner because she likes to do “the jelly bean game” where she tells us the color of a jelly bean and then gets to eat it. She tried, but had no idea at all and after the second one, we moved on. She wasn’t able to navigate at all either.
I am struggling with another bout of depression from just the thought we’ve lost everything in one eye. The only positive is that the procedure we’re doing might return some vision to her. But if she only has light vision, is a complicated procedure with a long recovery time that will put restrictions on her the right thing to do?
We are moving ahead, because there’s nothing to lose. If the procedure is successful, it might be successful in bringing more vision back to her left eye as well.
We continue to hope. We continue to try to be positive and make sure she and her brother have a normal, happy life to every extent we can manage, even though our hearts are breaking inside.
The Big Boy Update: I overheard my son saying to my husband today: “I like momma the best. I only like you a tiny, tiny bit.” (Guess which one of use just told him no?)
The Tiny Girl Chronicles: My daughter got bit in the face by our neighbor’s dog yesterday. This sounds worse than it is, but there was a reason. My daughter has to get very, very close to see anything and swooping in to a two inch distance from the dog’s face scared the normally very friendly dog. She barked a warning saying back up or I don’t like that or other dog communication that said she didn’t feel comfortable being that close. In so doing, her jaws caught my daughter on the cheek. My daughter is fine, my neighbor is mortified. The first thing she said was, “do I have to put Luna to sleep?!” We said absolutely not and have all agreed it’s an important thing for my daughter to learn when approaching animals. It could have been far worse. My daughter even talked to me about it in the car this morning and made me proud because she understood what happened and wasn’t one bit upset about it.
Fitness Doesn’t Quite Count Update: I lifted 1400lbs of sand today, twice. I put it all in the minivan and trudged it over to the clubhouse and then I lifted it out and put it on the porch in anticipation of our neighborhood luminary event tomorrow. Hopefully it counted somewhat towards a core and arms workout because I haven’t been doing squat lately.
Today, we decided to patch the left eye to see what she could discern with the right. We knew the left was dominant but we hoped the right was giving her some information, possibly a lot of information. She resisted. She really didn’t want a patch on her left eye but she let us do so for only a minute.
She can’t see in the right eye. Dr. Trese did a test and she can discern light, but it appears she’s lost all the vision in the right except light. She let us do another test after dinner because she likes to do “the jelly bean game” where she tells us the color of a jelly bean and then gets to eat it. She tried, but had no idea at all and after the second one, we moved on. She wasn’t able to navigate at all either.
I am struggling with another bout of depression from just the thought we’ve lost everything in one eye. The only positive is that the procedure we’re doing might return some vision to her. But if she only has light vision, is a complicated procedure with a long recovery time that will put restrictions on her the right thing to do?
We are moving ahead, because there’s nothing to lose. If the procedure is successful, it might be successful in bringing more vision back to her left eye as well.
We continue to hope. We continue to try to be positive and make sure she and her brother have a normal, happy life to every extent we can manage, even though our hearts are breaking inside.
The Big Boy Update: I overheard my son saying to my husband today: “I like momma the best. I only like you a tiny, tiny bit.” (Guess which one of use just told him no?)
The Tiny Girl Chronicles: My daughter got bit in the face by our neighbor’s dog yesterday. This sounds worse than it is, but there was a reason. My daughter has to get very, very close to see anything and swooping in to a two inch distance from the dog’s face scared the normally very friendly dog. She barked a warning saying back up or I don’t like that or other dog communication that said she didn’t feel comfortable being that close. In so doing, her jaws caught my daughter on the cheek. My daughter is fine, my neighbor is mortified. The first thing she said was, “do I have to put Luna to sleep?!” We said absolutely not and have all agreed it’s an important thing for my daughter to learn when approaching animals. It could have been far worse. My daughter even talked to me about it in the car this morning and made me proud because she understood what happened and wasn’t one bit upset about it.
Fitness Doesn’t Quite Count Update: I lifted 1400lbs of sand today, twice. I put it all in the minivan and trudged it over to the clubhouse and then I lifted it out and put it on the porch in anticipation of our neighborhood luminary event tomorrow. Hopefully it counted somewhat towards a core and arms workout because I haven’t been doing squat lately.
Thursday, December 17, 2015
Observational Abilities
I mentioned recently we had begun the process to get an Individualized Education Plan with the county’s school system. It’s a slow and complicated process, but it will ultimately give my daughter some help from educators who know how to address visual deficits. While we were in Detroit I received the evaluation from the sight expert we’ve been working with. Her name is Jane and my daughter likes her very much. Below is a summary of what Jane reported from her observations:
Visual acuity is assessed by the smallest identifiable object that can be seen at a specified distance. Her central acuity is limited. She sees best in her left temporal field and will hold objects about 1-2 inches from her left eye to identify them. Visual clutter further reduces her ability to see. In mid to distance ranges her functional acuity is severely reduced. She is unable to visually identify a classmate sitting next to her and she cannot identify her parents at four feet.
- She could not identify any named details in pictures with complexity. She had difficulty identifying pictures with a solid white background as well. For example, she could identify a 4 inch by 4-inch photo of an orange on white background correctly, but could not identify a 4 by 4 inch photo of a Volkswagen. She labeled it a telephone.
- When she dropped some crayons during her assessment she used a tactile approach to locating them on the floor.
- She was not able to visually identify any named details in simple line drawings on solid backgrounds (Boehm Test of Concepts)
- She could name 300-foot size numbers from 24 inches away (e.g. Feinbloom Low Vision Test)
- She was able to cut along bold black lines of a triangle.
- She could stack 5 blocks and imitate a model using 5 blocks.
A visual field refers to the entire region of space off to all sides that is visible when the person is steadily looking and facing straight ahead. Despite visual loss, she is able to navigate her familiar classroom with ease. She does not bump into other children or furniture, or the mats spread on the floor. She was able to move around most of the exhibits at the Children’s Museum, without bumping into objects or people. This suggests that she has some good peripheral vision. When she did bump into objects (a pole and a large sign) it was on the right side or it was a low contrast feature (e.g. wall of netting).
Color, Contrast and Lighting
Despite her apparent functional vision challenges, she is able to match and name 3 inch by 3 inch primary color squares, except for brown and black, which she confuses. She does appear to have reduced contrast sensitivity. She uses a tactile approach to locating objects on the floor. Her classroom teacher has noted better vision with good lighting (play next to the window). She shows some reluctance to move in dim places. She was not able to see dark colored beads on the dark carpet, but did appear to see them when they were placed on a white dish. Her classroom teacher noted that she could see black or dark blue bold high contrast lines on white paper but not red or green.
Depth Perception
Depth perception requires that both eyes work together in order to achieve a 3-dimensional fusion. During observations at the Children’s Museum, this appeared to be the case. She came very close to bumping into numerous people which is indicative of reduced depth perception. She had some difficulty perceiving height differences between stepping stones. She asked for help to ascend the spiral staircase to the slide (despite this being familiar to her). She did not see the outside cement steps when leaving but did respond to the command to “stop!” She would have fallen down 4 cement steps.
She used a handrail when moving on steps at the Children’s Museum. This was a good strategy for locating steps and for recognizing the beginning and end of steps. Her teachers reported that she has no difficulty when moving on her familiar playground. However, since Thanksgiving she is typically choosing to stay inside to do art activities rather than outside active play.
Movement and Navigation
She appears to have good visual memory for familiar places. Even though she presumably no longer sees detail, she can recognize large classroom features such as shelves, tables, doors and mats on the floor. She knows what to look out for and how to interpret what she sees. Because she had normal vision early on, she developed gross motor skills in a typical fashion.
Oculomotor skills
Oculomotor skills include fixation, tracking and shifting gaze. Fixation is the ability to direct a gaze and hold an object in steady view. Tracking is the systematic use of the eyes to follow an object. Shifting gaze is the ability to fix on an object, shift visual attention to another object, then return to the first object again. She is able to fixate on an object or symbol from about 1 -2 inches away from her left eye. When presented with very large numbers (using the Feinbloom Low Vision Test) She could fixate on numbers 12 inches away.
The Big Boy Update: Today was my son’s last day of After School care at our school. When school resumes in January he will be a member of the Extended Day class, which is the Montessori equivalent of Kindergarten. He will stay after noon for lunch with the other “extended dayers” and have another work cycle in the afternoon. He is very excited about his recent promotion.
The Tiny Girl Chronicles: I asked for a refund today for the Tae Kwon Do classes I signed my daughter up for earlier this month. They were fine with her being in the class with her vision in its current state, but with the ultimate outcome uncertain and the impending surgery (surgeries?) and the need to protect the eye, we decided to pull her out of the class. The staff wished her the best and we all hope she’ll be able to join the class again someday.
Wednesday, December 16, 2015
The Letter With the Details
Dr. Trese in Michigan dictated a letter to our doctor at Duke yesterday. I tried to take notes, but he said so many large words so quickly that I gave up. I think I would have gotten a lot of it but I was typing on an iPad with my laptop out of commission and autocorrect was working against me, correcting technical terms I was likely misspelling into normal, not-medical words that weren’t at all what I was trying to write. Today, I got a copy of that letter and now I can report exactly what’s going on and what the plan is.
Let me know when you figure out what all that means. We’re still working on it here.
We had the privilege of examine your patient on 12/14/2015. Certainly, she has a very complicated history including workup for immunologically derived bilateral serous detachments.
My understanding is that the child failed their school screening in March of this year and started to show significant visual reduction in August of this year with an episode of bilateral erythema followed by discovery of bilateral serous retinal detachments which appear to have progressed to a tractional detachment with hypotony in each eye. The traction appears to be involving a large amount of subretinal fibrosis, seemingly with minimally visible epiretinal tissue at this point in time. The child does have light perception in each eye, with better form vision in the left eye.
We did do an exam under anesthesia with water bath OCT and B-scan. We found a spherophakic lens and intraocular pressure of essentially 0 in both eyes. She does show significant amounts of uveal entropion in each eye and I think certainly manifests changes of an anterior dysgenesis circumstance. I think that she may also have a vitreous retinal dystrophy as well which may have been part of the evolution from serous to what appears to be now predominately tractional posterior retinal detachment. In her better left eye, there appears to be areas of avascular retina or bare choroid in some areas which we cannot be sure of but her visual function is undoubtedly better in the left eye. The exam of the right eye shows areas of retina that do appear to still have small amount of sub retinal fluid and vessels that extend further towards the periphery. I think that more likely than not this represents the anterior and posterior ocular dystrophy. I am not sure that this is a named ocular dystrophy but I do think that the hypotny which currently allows the child to have clear corneas may also have contributed to an even larger reduction in globe size. Her corneal diameters being approximately 7 and 8 mm in horizontal diameter. I think this also represents part of her anterior segment dysgenesis.
We have talked to the family about surgical intervention in her worse right eye which is just light perception. Our plan is to try and leave the spherophakic lens in place, realizing that it may have weakened zonules and to proceed with vitrectomy and silicone oil with perhaps Healon injection in the anterior segment.
I will keep you posted as to her progress and thank you very much for the privilege of sharing in her care.
Let me know when you figure out what all that means. We’re still working on it here.
Some Better News
The last time I wrote about things in my daughter’s eyes I had nothing but bad news to report. When we saw Dr. Trese after her evaluation under anesthesia he said he wanted to see us the following day at the end of his schedule. He was going to think about her situation and look up some things that he remembered from over a decade ago. When we did see him yesterday afternoon, he had a different plan and it was one that included the possibility of improving her vision.
First, those folds in her retinas that have scar tissue behind them have options. There is a procedure in which an incision is made at the edge of the retina. It can be folded back and the scar tissue can be cleared out. However, this isn’t the best option for my daughter because small children have a larger scarring response so he’s not going to start with that approach.
The ocular pressure can be raised through injection of substances that will inflate and hold the eye in place. Dr. Trese’s plan is to take her into surgery on this coming Monday the 21st of December to address one of her eyes. He did some testing and is going to do the procedure first on the right eye. That eye seems to be used less by her and the left eye—although it appears less-functional under the microscope—and he wants to preserve the precious vision she has in her left eye until we determine if the procedure is helpful.
He’ll remove part of the vitreous from the back half of her eye and replace it with silicone oil. He will then inject Healon into the front portion of her eye to help stabilize the large lens she has. He’s concerned the zonules that hold the lens in place and pull on it for focusing purposes may be fragile and he doesn’t want to strain them if possible.
This procedure will have give the right eye much better ocular pressure and the combination of silicone oil and better pressure may help flatten the folds of her retina which may increase her vision. The better pressure may also help stabilize and/or return the other functions of the eye to normal.
He’s going to do the right eye first, having us return in January right after the new year to see how things are progressing. If her vision is improving and she is showing good results from the procedure, he will consider doing the same thing to her left eye.
I am anxious but excited we may have a path to improve her vision. My husband had a good idea today: we patched her right eye to see how well she could function without it because it will be uncomfortable and patched for a period of time. She was able to move around quite well without the right eye. That’s bad news for what she’s seeing today in the eye but it does make us feel more comfortable about having the procedure.
We’re working with all the doctors here to coordinate the overall effort with this large team that has worked so hard to try and return my daughter’s vision. We depart on Sunday for a long drive north.
The Big Boy Update: Grandpa was talking to my son about how he was five. Grandpa said, “I’m even older than five.” My son said, “Grandpa, you’re older than all the numbers.” Ouch.
The Tiny Girl Chronicles: We put a patch on my daughter’s right eye. We put an Angry Birds bandage on top of the patch and she was excited to have it on her face. Soon enough she’s going to not be happy to have things on her eye, but for now we were able to make it fun.
First, those folds in her retinas that have scar tissue behind them have options. There is a procedure in which an incision is made at the edge of the retina. It can be folded back and the scar tissue can be cleared out. However, this isn’t the best option for my daughter because small children have a larger scarring response so he’s not going to start with that approach.
The ocular pressure can be raised through injection of substances that will inflate and hold the eye in place. Dr. Trese’s plan is to take her into surgery on this coming Monday the 21st of December to address one of her eyes. He did some testing and is going to do the procedure first on the right eye. That eye seems to be used less by her and the left eye—although it appears less-functional under the microscope—and he wants to preserve the precious vision she has in her left eye until we determine if the procedure is helpful.
He’ll remove part of the vitreous from the back half of her eye and replace it with silicone oil. He will then inject Healon into the front portion of her eye to help stabilize the large lens she has. He’s concerned the zonules that hold the lens in place and pull on it for focusing purposes may be fragile and he doesn’t want to strain them if possible.
This procedure will have give the right eye much better ocular pressure and the combination of silicone oil and better pressure may help flatten the folds of her retina which may increase her vision. The better pressure may also help stabilize and/or return the other functions of the eye to normal.
He’s going to do the right eye first, having us return in January right after the new year to see how things are progressing. If her vision is improving and she is showing good results from the procedure, he will consider doing the same thing to her left eye.
I am anxious but excited we may have a path to improve her vision. My husband had a good idea today: we patched her right eye to see how well she could function without it because it will be uncomfortable and patched for a period of time. She was able to move around quite well without the right eye. That’s bad news for what she’s seeing today in the eye but it does make us feel more comfortable about having the procedure.
We’re working with all the doctors here to coordinate the overall effort with this large team that has worked so hard to try and return my daughter’s vision. We depart on Sunday for a long drive north.
The Big Boy Update: Grandpa was talking to my son about how he was five. Grandpa said, “I’m even older than five.” My son said, “Grandpa, you’re older than all the numbers.” Ouch.
The Tiny Girl Chronicles: We put a patch on my daughter’s right eye. We put an Angry Birds bandage on top of the patch and she was excited to have it on her face. Soon enough she’s going to not be happy to have things on her eye, but for now we were able to make it fun.
Tuesday, December 15, 2015
Inside My Daughter's Eyes
Alright, I'm going to try and explain what's happening inside my daughter's eyes. I'm at the business center at our hotel at a real monitor and keyboard and I'm able to think and type while my husband and daughter are in our room getting ready to check out.
Dr. Trese said she was one of the most complicated cases he's seen in a while. He said trying to piece everything that's going on inside her eyes into one diagnosis would be nice, but it may not be possible. He said at one point in a casual, almost offhanded way, "I get all the crazy cases". And that's exactly why we went to see him. We need an expert on crazy.
As he talked, I took notes as fast as I could and I'm going to try and explain it, but I don't know that I fully understand it myself so this information may be updated in a later post if and when we learn more.
She has extensive sub-retinal fibrosis. This is contributing to those crazy folds you see in her retina. What happened, he thinks is the serous retinal detachment caused fluid to build up behind the retina. Those cells turned into scar tissue. The serous detachment is resolved at this point, but that serous fluid was a culture medium for scar tissue to grow. That scar tissue has now contracted. The shrinking has caused the folds in her retina to worsen.
This means the retinal folds can't lie back down onto the choroid because they're being held in the folded mess. This means the fovea centralis, or central focal point we use for our main vision is folded and can't get information from the lens.
What caused this? Dr. Trese said he tried to look up something he rembers from about fifteen years ago while he was in the OR but he couldn't find it. There was a case of multiple people who had something similar that was triggered by a viral infection. He's going to see if he can find it for reference prior to our meeting today.
As far as her eye in general go. They are not correctly formed. The lenses are almost round. Lenses are not as thick as they are wide. Her lenses are five millimeters thick, making them almost spherical. Both eyes are smaller by a significant amount. The corneas diameter measures 7-8 and should be 10-11. These are things she was born with. Did they contribute to her current situation? Was she pre-disposed to something triggering her current condition? The answers to these questions are unknown. There is evidence that conditions like hers are connected with virteal detachment.
The pressure in her eyes is at zero, which is very low and is not good. The right eye appears to have abnormal circulation. Circulation in the left eye looks worse than the right eye. It appears the left eye may have had a very large retinal tear as there is no evidence of blood flow in that part of the retina. This is an indication those cells have died and zero information is being transmitted in that area. The center part of both eyes is terribly folded.
Is there a leaking of fluid? I had talked about the fluid producing cells and a possible leak in a prior post. With central retinal dystrophy there is an association with colalgen issues, which could be an important clue. Sometimes children who have this can have exposed areas of the choroid causing a leaking of fluid.
Those fluid producing cells are called cillary. The cillary body, which is found in front of the retinal area, looks atrophic. This means either there is decreased production or an increased outflow. This is still an unknown. There appears to have or have been fluid behind the cillary area similar to the serous detachment, further causing complication in her eyes.
There is an effluvia effusion syndrome that might account for what has happened, especially since it happened bilaterally (to both eyes). Was it a viral infection? If she didn't have the vitreous retinal dystrophy it might not have resulted in the damage to her eyes.
Dr. Trese is not sure if there is any genetic testing to be done related to the speherical lenses but he is going to look into it.
What can be done to help stop the process of vision loss, return the pressure to her eyes and stabalize her vision? He said she was one of three of the most complicated cases he's seen in a while and making a plan to help while not causing more harm or reduction in her remaining vision is important.
The low pressure can be address with the addition of silicone oil into the eyes. The oil will remain and won't permeate out. This has long-term issues such as causing cataracts, but lenses can be replaced with artifical lenses later. The best plan would be to inject the eye she is using less (right eye) and see how that changes her vision. If there is a positive outcome from that then proceede with the left eye.
There are other ways to increase the pressure without silicone oil but they require continual injection of a semi-solid substance called Helon. He doesn't want to do anything that increases her risk, but he doesn't want to lose more of her vision either.
Today we return to Dr. Trese's office for him to evaluate what she can see now by observation. We may return next Monday or early in January for an injection in one of her eyes.
Dr. Trese said she was one of the most complicated cases he's seen in a while. He said trying to piece everything that's going on inside her eyes into one diagnosis would be nice, but it may not be possible. He said at one point in a casual, almost offhanded way, "I get all the crazy cases". And that's exactly why we went to see him. We need an expert on crazy.
As he talked, I took notes as fast as I could and I'm going to try and explain it, but I don't know that I fully understand it myself so this information may be updated in a later post if and when we learn more.
She has extensive sub-retinal fibrosis. This is contributing to those crazy folds you see in her retina. What happened, he thinks is the serous retinal detachment caused fluid to build up behind the retina. Those cells turned into scar tissue. The serous detachment is resolved at this point, but that serous fluid was a culture medium for scar tissue to grow. That scar tissue has now contracted. The shrinking has caused the folds in her retina to worsen.
This means the retinal folds can't lie back down onto the choroid because they're being held in the folded mess. This means the fovea centralis, or central focal point we use for our main vision is folded and can't get information from the lens.
What caused this? Dr. Trese said he tried to look up something he rembers from about fifteen years ago while he was in the OR but he couldn't find it. There was a case of multiple people who had something similar that was triggered by a viral infection. He's going to see if he can find it for reference prior to our meeting today.
As far as her eye in general go. They are not correctly formed. The lenses are almost round. Lenses are not as thick as they are wide. Her lenses are five millimeters thick, making them almost spherical. Both eyes are smaller by a significant amount. The corneas diameter measures 7-8 and should be 10-11. These are things she was born with. Did they contribute to her current situation? Was she pre-disposed to something triggering her current condition? The answers to these questions are unknown. There is evidence that conditions like hers are connected with virteal detachment.
The pressure in her eyes is at zero, which is very low and is not good. The right eye appears to have abnormal circulation. Circulation in the left eye looks worse than the right eye. It appears the left eye may have had a very large retinal tear as there is no evidence of blood flow in that part of the retina. This is an indication those cells have died and zero information is being transmitted in that area. The center part of both eyes is terribly folded.
Is there a leaking of fluid? I had talked about the fluid producing cells and a possible leak in a prior post. With central retinal dystrophy there is an association with colalgen issues, which could be an important clue. Sometimes children who have this can have exposed areas of the choroid causing a leaking of fluid.
Those fluid producing cells are called cillary. The cillary body, which is found in front of the retinal area, looks atrophic. This means either there is decreased production or an increased outflow. This is still an unknown. There appears to have or have been fluid behind the cillary area similar to the serous detachment, further causing complication in her eyes.
There is an effluvia effusion syndrome that might account for what has happened, especially since it happened bilaterally (to both eyes). Was it a viral infection? If she didn't have the vitreous retinal dystrophy it might not have resulted in the damage to her eyes.
Dr. Trese is not sure if there is any genetic testing to be done related to the speherical lenses but he is going to look into it.
What can be done to help stop the process of vision loss, return the pressure to her eyes and stabalize her vision? He said she was one of three of the most complicated cases he's seen in a while and making a plan to help while not causing more harm or reduction in her remaining vision is important.
The low pressure can be address with the addition of silicone oil into the eyes. The oil will remain and won't permeate out. This has long-term issues such as causing cataracts, but lenses can be replaced with artifical lenses later. The best plan would be to inject the eye she is using less (right eye) and see how that changes her vision. If there is a positive outcome from that then proceede with the left eye.
There are other ways to increase the pressure without silicone oil but they require continual injection of a semi-solid substance called Helon. He doesn't want to do anything that increases her risk, but he doesn't want to lose more of her vision either.
Today we return to Dr. Trese's office for him to evaluate what she can see now by observation. We may return next Monday or early in January for an injection in one of her eyes.
The Bathroom Meeting and Other Thoughts
Yesterday was a sad day to be sure. My husband and I have been hoping for good news, any positive progress and a path to follow for my daughter's vision to improve. We've been holding on to hope and putting as positive a front forward to friends and family that we could. We had hope. Yesterday we were told, again, that the situation wasn't good and had to, again, change our expectations for her ultimate visual ability. We're trying to accept that she will be almost blind, if not complely blind. The implications for her life are fairly staggering to think about.
So within all of that, alone in a city just the three of us: my husband, my daughter and me, I asked to be given some space and to not contact us. Last time, when my daughter was admitted to the hospital, I felt like I was smothered in love, caring and concern. I was drowning in emails, text messages and phone calls. I felt obligated to get back to everyone because each person cared enough to reach out to us. I didn't think I could do it again this time.
But it's lonely without support. My husband and I are coping as well as can be expected. We've had conversations with our parents and we're all in shock in a sense, trying to process the implications. My daughter, as always, is happy and unphased other than the bits about the doctor she doesn't like (IVs, being put to sleep, eye drops, long waits without food before procedures, etc.).
This morning my daughter decided she wanted waffles (she ordered pancakes instead when we arrived) and as we were waiting for our food I went to the bathroom. I started crying as I entered the stall and when I came out a petit, old black woman was standing at the sink. She said, "is your daughter going blind?" She had been sitting across from us and had been watching us help our daughter with the menu, crayons, finding her drink on the table, etc.
She hugged me and cried with me and told me she knew of a place that did eye transplants for free. She is going to send me the information, she promised. I thanked her, not telling her the part of my daughter's eyes that was broken wasn't a part that could be transplanted. It was a very touching gesture.
We're coping and thinking about what we need to do next to help my daughter. She's already seeing a play therapist who is helping her as well as my husband and me understand how she's processing and dealing with the change in her vision and all the doctors visits and procedures.
We've gotten the county school system involved (thanks to an early recommendation by my daughter's eye doctor) and her IEP (Individualized Education Plan) is close to complete. She will, at minimum, have help from the specialist in childhood vision from the county two afternoons each week at school. If more needs to be done such as another school, we'll have to address that as the school year progresses.
I'm going to look into singing lessons for her. She simply loves to sing. I think she'd like to have someone who sings with her each week. I'm not sure about the Tae Kwon Do classes I just signed her up for with her brother. If her vision improved, it would be a fun class for her. I may request a refund as we haven't started yet and I'm not sure she'll be able to participate without being frustrated. I'll have to think on that one for a while.
Right now she can watch television shows and movies on the iPad at very close range. She seems to be learning a lot from shows like Super Why and enjoys telling us about it afterwards.
There are going to be a lot of changes. There is a small chance (this is me speaking, not the doctor) that the procedure he may decide to do after our meeting today might improve her vision a little. That's my hope. That is my extreme hope.
The Big Boy Update: My son is really enjoying Tae Kwon Do classes. He wanted to go last night to show Nana and Papa what he's learned. He has the very first beginner white belt, but after doing well in a class they take a piece of colored tape and wrap it around the end of the belt. He got another piece of red tape last night. He was very proud.
The Tiny Girl Chronicles: My daughter loves to sing. She knows she has to be careful not to jump on dad because of his recent hernia surgery. Yesterday she said, "I'm going to sing you a song about your surgery, daddy."
So within all of that, alone in a city just the three of us: my husband, my daughter and me, I asked to be given some space and to not contact us. Last time, when my daughter was admitted to the hospital, I felt like I was smothered in love, caring and concern. I was drowning in emails, text messages and phone calls. I felt obligated to get back to everyone because each person cared enough to reach out to us. I didn't think I could do it again this time.
But it's lonely without support. My husband and I are coping as well as can be expected. We've had conversations with our parents and we're all in shock in a sense, trying to process the implications. My daughter, as always, is happy and unphased other than the bits about the doctor she doesn't like (IVs, being put to sleep, eye drops, long waits without food before procedures, etc.).
This morning my daughter decided she wanted waffles (she ordered pancakes instead when we arrived) and as we were waiting for our food I went to the bathroom. I started crying as I entered the stall and when I came out a petit, old black woman was standing at the sink. She said, "is your daughter going blind?" She had been sitting across from us and had been watching us help our daughter with the menu, crayons, finding her drink on the table, etc.
She hugged me and cried with me and told me she knew of a place that did eye transplants for free. She is going to send me the information, she promised. I thanked her, not telling her the part of my daughter's eyes that was broken wasn't a part that could be transplanted. It was a very touching gesture.
We're coping and thinking about what we need to do next to help my daughter. She's already seeing a play therapist who is helping her as well as my husband and me understand how she's processing and dealing with the change in her vision and all the doctors visits and procedures.
We've gotten the county school system involved (thanks to an early recommendation by my daughter's eye doctor) and her IEP (Individualized Education Plan) is close to complete. She will, at minimum, have help from the specialist in childhood vision from the county two afternoons each week at school. If more needs to be done such as another school, we'll have to address that as the school year progresses.
I'm going to look into singing lessons for her. She simply loves to sing. I think she'd like to have someone who sings with her each week. I'm not sure about the Tae Kwon Do classes I just signed her up for with her brother. If her vision improved, it would be a fun class for her. I may request a refund as we haven't started yet and I'm not sure she'll be able to participate without being frustrated. I'll have to think on that one for a while.
Right now she can watch television shows and movies on the iPad at very close range. She seems to be learning a lot from shows like Super Why and enjoys telling us about it afterwards.
There are going to be a lot of changes. There is a small chance (this is me speaking, not the doctor) that the procedure he may decide to do after our meeting today might improve her vision a little. That's my hope. That is my extreme hope.
The Big Boy Update: My son is really enjoying Tae Kwon Do classes. He wanted to go last night to show Nana and Papa what he's learned. He has the very first beginner white belt, but after doing well in a class they take a piece of colored tape and wrap it around the end of the belt. He got another piece of red tape last night. He was very proud.
The Tiny Girl Chronicles: My daughter loves to sing. She knows she has to be careful not to jump on dad because of his recent hernia surgery. Yesterday she said, "I'm going to sing you a song about your surgery, daddy."
Monday, December 14, 2015
Well, It's Not Good
I wish I could write this today to say we have some good news to share, but I can't. I'm going to make this short for two reasons, first, I'm mentally exhausted and second, my laptop got water spilled on it last night and it's a brick now so writing a long blog post just isn't happening tonight.
Dr. Trese was very nice, taking lots of time to explain things to us. I have copious notes on how my daughter's eyes are different, how what's happened and is happening to them goes beyond unusual into the ultra rare range and how, ultimately, the hope is to preserve what vision she has left because that's likely all she'll ever have.
We're staying overnight because Dr. Trese wants to see her in his office tomorrow and observe her visual ability, to determine what she can still see, because thereafe options they have that might help, but they may affect the vision she has now.
When I get home and get a laptop I'll write out some specifics from today. It's interesting in a horrifying ocular way and I don't think anything could have been done to predict or stop it even if we'd been in the best spot or had known any more earlier on.
That being said, we're okay and I need to ask that we be given a chance to cope with this as a family. We're fine on support, don't need meals brought and above all, have a child who seems fine with everything without any special fuss. My husband and I just need some time to figure out things on our own.
Thanks to everyone for their positive thoughts, prayers, supportive comments and love. We appreciate every one of you and thank you for your understanding.
The Big Boy Update: We re waving bye to a friend the other day. As we drove off my son said, "bye, bye Benjamin. You look smaller than usual."
The Tiny Girl Chronicles: After the EUA in Detroit today we checked back into our hotel and were given the room right beside the pool. Pool, did you say? A pool is a sure fire way to make your four-year-old smile so we went to Target and got suits. She , my husband and I had a fantastic time swimming, playing, singing and playing games in the empty pool and hot tub area. Tomorrow we're going back before our appointment in the afternoon.
Sunday, December 13, 2015
Detroit
My husband, daughter and I traveled to Detroit today to see a doctor tomorrow morning about my daughter’s eyes. We had told my daughter what a fun trip it would be, just the three of us taking time to be together. There was this little thing we’d be doing visiting a doctor in the morning, but other than that, it was a fun trip and a special thing just for her.
Or at least that’s how we’ve been selling it to her. She has been excited and she was looking forward to going to Detroit. She would ask us, “how many days until I get to go to Detroit?” She even knew Nana and Papa were staying with her brother but she was okay missing out on being with them.
Today was the day, we got ready to go to the airport and got a call from the airline the flight had been delayed and we’d been rebooked on another flight. No worries, we were at home and would kist leave later for the airport. The flight was delayed a second time and my daughter asked when we were going to start our adventure together. I said, “soon, there has been fog in the next city and the planes couldn’t land.”
We arrived at the airport to another delay, followed by a time adjustment (delay) because the last delay wasn’t estimated correctly. When we got on the plane we were far back in line so we waited. When we were second in line the pilot came on the speaker and told us there was a problem that just appeared and we had to taxi back to have it looked at. He thought it would be a quick fix.
It was a quick fix, and we were finally almost about to be in flight to Detroit. We arrived here and got to a restaurant at eight-forty-five and are now on the way to the hotel.
So, has it been a fun trip for my daughter? Yes, it has. She wasn’t frustrated at the delay because it was just time with us in one place versus another. I had lots of new, fun things to play with her and she happily asked both my husband and me to do all sorts of things with her.
There were new apps on the iPad the were captivating and she even decided to watch a movie (something she rarely does) and wore my husband’s headphones while Finding Nemo played. The headphones were new to her and we had to both laugh and shush her as she cried out in an overly loud voice, “she was stung by the jellyfish!” and other comments.
Everyone thought she was charming and no one knew she had a serious visual deficit. She even laughed and got everyone to play a throw and catch game with her “Buzz Buzz” stuffed animal on the rental car shuttle. She’s just been a delight all day. I hope we can make tomorrow as special for her given the real reason we’ve come to Detroit.
We’re close to the hotel now so I’ll wrap this up by saying she’s fallen asleep on her new glowing pillow pet in the car seat.
The Big Boy Update: My son got the game Connect Four for his birthday. He took one look at it and was basically not impressed. I just love Connect Four. I spent so much time playing with friends throughout my childhood and I still have my partially broken set in a closet upstairs. When Nana saw it she was excited about it too. She said she’d teach him how to play while we’re gone.
The Tiny Girl Chronicles: My daughter loves to share. She was offering some of her food to my husband and then she offered some to me. We thanked her and accepted the food. She casually said, “you know how much I love to share” and smiled and kept eating.
Or at least that’s how we’ve been selling it to her. She has been excited and she was looking forward to going to Detroit. She would ask us, “how many days until I get to go to Detroit?” She even knew Nana and Papa were staying with her brother but she was okay missing out on being with them.
Today was the day, we got ready to go to the airport and got a call from the airline the flight had been delayed and we’d been rebooked on another flight. No worries, we were at home and would kist leave later for the airport. The flight was delayed a second time and my daughter asked when we were going to start our adventure together. I said, “soon, there has been fog in the next city and the planes couldn’t land.”
We arrived at the airport to another delay, followed by a time adjustment (delay) because the last delay wasn’t estimated correctly. When we got on the plane we were far back in line so we waited. When we were second in line the pilot came on the speaker and told us there was a problem that just appeared and we had to taxi back to have it looked at. He thought it would be a quick fix.
It was a quick fix, and we were finally almost about to be in flight to Detroit. We arrived here and got to a restaurant at eight-forty-five and are now on the way to the hotel.
So, has it been a fun trip for my daughter? Yes, it has. She wasn’t frustrated at the delay because it was just time with us in one place versus another. I had lots of new, fun things to play with her and she happily asked both my husband and me to do all sorts of things with her.
There were new apps on the iPad the were captivating and she even decided to watch a movie (something she rarely does) and wore my husband’s headphones while Finding Nemo played. The headphones were new to her and we had to both laugh and shush her as she cried out in an overly loud voice, “she was stung by the jellyfish!” and other comments.
Everyone thought she was charming and no one knew she had a serious visual deficit. She even laughed and got everyone to play a throw and catch game with her “Buzz Buzz” stuffed animal on the rental car shuttle. She’s just been a delight all day. I hope we can make tomorrow as special for her given the real reason we’ve come to Detroit.
We’re close to the hotel now so I’ll wrap this up by saying she’s fallen asleep on her new glowing pillow pet in the car seat.
The Big Boy Update: My son got the game Connect Four for his birthday. He took one look at it and was basically not impressed. I just love Connect Four. I spent so much time playing with friends throughout my childhood and I still have my partially broken set in a closet upstairs. When Nana saw it she was excited about it too. She said she’d teach him how to play while we’re gone.
The Tiny Girl Chronicles: My daughter loves to share. She was offering some of her food to my husband and then she offered some to me. We thanked her and accepted the food. She casually said, “you know how much I love to share” and smiled and kept eating.
Saturday, December 12, 2015
Ordinary Brain
We got some results yesterday on my daughter’s brain MRI. During the initial hospitalization at the start of September she had a brain MRI which showed some white spots in a few places in her brain. The preliminary report made it sound a little scary, like were these mini-tumors or something, but we were told very quickly by a friend not to be alarmed by that as it likely wasn’t abnormal.
Sure enough, when the neurology team came in to give us an overview of the results the first thing they told us was not to worry about the white spots, they were very common in a significant portion of humans and the cause, function or meaning of them was unknown. They said that if the spots on her MRI were of that type they would remain in her brain probably all her life. They suggested we do another scan in a few months to see if things had changed.
Wednesday was that re-scan day and I wanted to know if we could eliminate the brain or if there was something involved that would be visible on the scan. What if, for instance, she had inflammation around the optic nerves? What if the white spots had grown or changed?
Even before we had left the hospital, when my daughter was just waking up from the anesthesia, our main eye specialist told us the preliminary report showed nothing wrong with her brain. I’m very glad she has just an ordinary brain at this point.
We got the final report yesterday in which it details the white spots still exist and are unchanged from the prior scan. The scan also noted what our eye doctors had been seeing as well, that she has micropthalmia (small eyes) that look to be low in pressure (low fluid) and the retinas appear to be detached from what the scan reader could tell.
Tomorrow we head to Detroit. As a side note, apparently in the last day or two I wrote both Detroit and Denver in a blog post. We are going to Detroit. Denver is lovely, but Dr. Trese doesn’t practice there. Thanks to those of you who let me know.
The Big Boy Update: Today was my son’s fifth birthday party. We had it at the house here and were treated to seventy-four degree weather, which felt like a sunny summer’s day and was wholly unexpected. We had the party in the walk-out basement and let the children run around the back yard. A balloonist came and he and his assistant did delightful balloon animals for everyone (mostly light sabers for the boys), magic tricks were performed and fire was eaten by “the head guy” as my son called him. Angry Birds cup cakes were enjoyed by all at the end and hopefully we’ll all sleep soundly tonight as a result.
The Tiny Girl Chronicles: Nana brought my daughter a baby doll cradle today. It is a beautiful wooden one given to her from their neighbors. My mother-in-law made bedding for it and when my daughter saw it she immediately put her frog ballerina stuffed animal she was given today from JoAnn and Henry. She rocked it a little bit and then looked up at Nana and said, “you could be the babysitter tomorrow because I’m not going to be here.” I think she’s looking forward to her special trip with dad and me. I just hope we can sell this trip as fun and not just another trip to a hospital.
Friday, December 11, 2015
Cutting It Close
Today is my son’s fifth birthday. We did some celebrating at home and at school but tomorrow is when we’ll celebrate with friends at his birthday party here at the house. He was excited when we woke up and the first thing we did was to measure how tall he was by marking a line on the wall in the little play room beside their beds. He grew about as much this past year as he did the year before. His sister is a little taller than he was at four, we’ll see if she outgrows him by five.
My son was looking forward to the celebration in his class this morning. By tradition, the family of the birthday child brings a snack and some pictures with a story to tell about each year of the child’s life. My son wanted to bring his favorite apples, Honey Crisp, to share with the class. We went and got several bags of the small version of the apples, put them in a large basket and took them to school this morning.
My son asked if his sister could come join in his birthday celebration. The teachers said that would be fine and to come into her classroom when we arrived to bring her over to join with his class. My husband went into my son’s class with our basket of apples while I went to get his sister. She was at a desk doing some cutting work.
As I approached her, the teacher came over and told me the substitute teacher (one of the mothers and a friend of mine) had been a bit alarmed to watch my daughter cut the paper. The work she was doing involves an inch wide strip of paper with lines marked along about every centimeter. You job is to cut on those lines, turning the strip of paper into a lot of one inch by one centimeter rectangles. My daughter loves cutting work.
In Montessori schools the scissors they use are not safety scissors. They’re sharp and they’re pointy. In order for my daughter to do this work she has to have the paper and the scissors about an inch from her eye. It looks frightening, but she does it very well. The teacher told the mother it was okay, but I am grateful she was looking out for her as in any other situation, I would be alarmed too.
The Big Boy Update: My son was very happy today. He got calls from family members wishing him a happy birthday and he loved talking to every one of them. He opened presents and has been gracious and kind to everyone all day. Five seems to suit him.
The Tiny Girl Chronicles: My daughter asked me four times, “when is it going to be my lemons day?” before I understood what she meant. On Fridays, the nap linens (not lemons) are sent home to be washed. She wanted to know how much longer it would be until it was the weekend.
My son was looking forward to the celebration in his class this morning. By tradition, the family of the birthday child brings a snack and some pictures with a story to tell about each year of the child’s life. My son wanted to bring his favorite apples, Honey Crisp, to share with the class. We went and got several bags of the small version of the apples, put them in a large basket and took them to school this morning.
My son asked if his sister could come join in his birthday celebration. The teachers said that would be fine and to come into her classroom when we arrived to bring her over to join with his class. My husband went into my son’s class with our basket of apples while I went to get his sister. She was at a desk doing some cutting work.
As I approached her, the teacher came over and told me the substitute teacher (one of the mothers and a friend of mine) had been a bit alarmed to watch my daughter cut the paper. The work she was doing involves an inch wide strip of paper with lines marked along about every centimeter. You job is to cut on those lines, turning the strip of paper into a lot of one inch by one centimeter rectangles. My daughter loves cutting work.
In Montessori schools the scissors they use are not safety scissors. They’re sharp and they’re pointy. In order for my daughter to do this work she has to have the paper and the scissors about an inch from her eye. It looks frightening, but she does it very well. The teacher told the mother it was okay, but I am grateful she was looking out for her as in any other situation, I would be alarmed too.
The Big Boy Update: My son was very happy today. He got calls from family members wishing him a happy birthday and he loved talking to every one of them. He opened presents and has been gracious and kind to everyone all day. Five seems to suit him.
The Tiny Girl Chronicles: My daughter asked me four times, “when is it going to be my lemons day?” before I understood what she meant. On Fridays, the nap linens (not lemons) are sent home to be washed. She wanted to know how much longer it would be until it was the weekend.
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