I’ve mentioned before how maddening it is to try and find out what my daughter can and cannot see and if things are changing from yesterday, last month, what she remembers in her mind from before she lost her vision, etc. It’s not that she doesn’t want to tell us, she isn’t mentally mature enough to be able to understand and explain what’s happening.
There’s something called the “Little Adult Fallacy” in which we presume a child thinks in the same way we do. We can get into all sorts of trouble expecting a child to understand things the way we do or behave in a way that makes sense to adults. For my daughter, I know she’s not a little adult, but I still try to sneak in probing questions to see if I can glean some meaningful insight based on her answers. Usually this just annoys her and I don’t get what I’m looking for.
Another downside to the questioning is when a child gives you the answer they think you want to hear because they want to please you or make you happy. Whenever I think I’ve gotten some good news about improved vision from my daughter, I always table my excitement until I watch to see if her behavior matches her words.
I’m rambling on about this because today was the first day my daughter had her new corrective lenses on all day. Could she see better? She went to school with her glasses on and this afternoon I picked her up to take her to gymnastics. I couldn’t help myself, I asked her in the car if she could see things better with her new lenses.
There was a little pause, which I think was her thinking about the question and then she said, “super duper duper duper better.” Trying to contain my excitement, remembering she was wearing her non-corrective sunglasses when I had picked her up, choosing not to wear the new glasses. But I pushed on, asking if it was better in the left eye, right eye or both eyes? (She has a prescription in both now, even though the retina is still detached in the left.) She thought about it and said, “both.”
Throwing caution to the wind I pressed on because she didn’t seem annoyed I was asking her questions about her eyes like she does sometimes, I asked her if it was easier to see things near or far? She replied, “near and far.”
There is some evidence to back this up from gymnastics too. She was able to watch what the teacher was doing from a reasonable distance and follow along. She has in the past made up something or just stood and looked uncomfortable when she couldn’t tell what was happening around her and didn’t know what to do.
They also had fun rolling a hula hoop across the floor and having my daughter chase after it. My daughter selected an orange hula hoop, which against a dark red floor was not the easiest contrast for her to see. As Ms. Julie rolled the hoop, my daughter could easily chase after it. She’s got good peripheral and motion vision, but they’ve never done this before. What happened next we had to repeat because we were so thrilled about it. Julie rolled the hoop and my daughter ran after it, catching up to it and then grabbing it as it was still rolling.
What happened next made my day. As my daughter and Julie were putting the hula hoop away my daughter, unsolicited, said to her, “I’m seeing so much better…since I got my new lenses.”
The Big Boy Update: Tonight at dinner my son suddenly said, “people of different color can marry each other.” I told him that was absolutely true. I asked him if they had talked about that at school. He leaned over the seat and pointed to a mix-race twosome sitting across the room and said, “It’s because of look at those people over there”. I told him that was a very good observation.
The Tiny Girl Chronicles: My daughter likes dresses. I’ve always bought some and put them in her drawers and she’s worn them mostly when I picked them out for her but otherwise preferred shorts and pants. Lately she actively looks for dresses. This morning I was suggesting a shirt and shorts for school since she had gymnastics directly afterwards. She said, “but mom, I want to wear a dress.”
Wednesday, May 4, 2016
Tuesday, May 3, 2016
Perfluorocarbon
I said there would be a picture last night and today I have that picture. Can I take a moment to complain about getting a picture of a picture without getting a shadow on the original picture? Scan the picture, you say? I’ve tried that and while it fixes the shadow and light issue, there is a resolution problem. My phone camera today makes my printer/scanner look like a toddler making a copy of a picture out of Cheerios. But I managed it by standing at a strange angle with several lights on at once. When I walked over to my computer, through the power of the Cloud, the picture was waiting for me, which is super cool.
Okay, so what does the picture show? Let’s go back to a picture from December of this past year for comparison. In the picture below, you see white folds with red lines in them and a dark orange, cloudy background. The folds of white are the retina folded into the center of the eye space. The red lines are blood vessels, which means the retina is still getting blood flow. The dim orange area is cloudy, indicating inflammation. This is not a good, ‘orange reflex’ (otherwise known as ‘red eye’ caught in pictures).
This afternoon I hope to get lenses back for my daughter’s glasses. I’ll let you know tomorrow how that goes, but for now I’m just going to look at the picture of my daughter’s attached retina and take a big sigh of relief.
The Big Boy Update: My daughter told my son she and he got presents on her trip. They had bought small Dori and Marlin plush characters from the movie Finding Nemo. My son was petulant at first, saying they were “girls toys” but by the time he was ready to go to school he was holding on to them in the back seat, saying he couldn’t put his seat belt on because his hands were full. We listened to stories from the movie Finding Nemo all the way to school.
The Tiny Girl Chronicles: This morning as my daughter was getting dressed I heard her start singing, “Just keep swimming. Just keep swimming. Hey—why are you following me?” You don’t suppose she was watching Finding Nemo on the trip, do you? Both my daughter and son are looking forward to the upcoming sequel, Finding Dori.
Okay, so what does the picture show? Let’s go back to a picture from December of this past year for comparison. In the picture below, you see white folds with red lines in them and a dark orange, cloudy background. The folds of white are the retina folded into the center of the eye space. The red lines are blood vessels, which means the retina is still getting blood flow. The dim orange area is cloudy, indicating inflammation. This is not a good, ‘orange reflex’ (otherwise known as ‘red eye’ caught in pictures).
Let’s compare to the picture from yesterday. Look at the bright orange/red areas. This is an attached retina. Don’t worry about the darker area on the right side, that’s just the angle of the camera and light. Look at how clear the eye appears. There is no inflammation. And this is the cool part, do you see what looks like a big bubble on the left side? That’s the heavy substance, Perfluorocarbon or PFO, that’s been rolling around in my daughter’s eye, helping to flatten the retina down since December.
The Big Boy Update: My daughter told my son she and he got presents on her trip. They had bought small Dori and Marlin plush characters from the movie Finding Nemo. My son was petulant at first, saying they were “girls toys” but by the time he was ready to go to school he was holding on to them in the back seat, saying he couldn’t put his seat belt on because his hands were full. We listened to stories from the movie Finding Nemo all the way to school.
The Tiny Girl Chronicles: This morning as my daughter was getting dressed I heard her start singing, “Just keep swimming. Just keep swimming. Hey—why are you following me?” You don’t suppose she was watching Finding Nemo on the trip, do you? Both my daughter and son are looking forward to the upcoming sequel, Finding Dori.
Monday, May 2, 2016
EUA, This Time With Refraction
It’s that time of month again—there’s a trip to Detroit, a visit to my daughter’s retina surgeon and possibly, but not necessarily some sedation in an operating room. Today was the day and due to some drawing of straws, flipping of coins and me saying things like, “you are just so GOOD at taking her” to my husband, I stayed home and he left yesterday with my daughter on a flight north.
There were travel problems yesterday and there have been more travel problems today. I won’t digress but I can say I’m not sure any amount of cajoling and complementing my husband will make him want to be the lead parent next time. But on to the good stuff—the results are in.
I say that like we’re going to suddenly go from dismal sight to fully restored vision, which just ain’t gonna happen. But there is good news and information and…get this…a picture too. Only the picture is still in transit with my husband so I’ll save that for tomorrow.
The thing that’s the best news is the right eye’s retina is attached. It’s smooth and lays down just like a retina should, thus giving the eye the best chance for non-distorted vision. The right ocular pressure is a bit lower than last month, but within reasonable range.
You may remember my daughter’s natural lens being removed in December and during that same procedure, artificial substances were added to her eye to try and return structure and help the retina reconnect with the choroid layer behind it. Typically, without a natural lens, you would have one doosie of a prescription, say +10 to +20, but the Silicone Oil and PFO that was added to her eye is now acting as a sort of internal lens in the back of her eye. Dr. Trese measured her prescription at a +4.5 today. He said since the PFO moves around, she may have better corrected vision laying down or perhaps standing, depending on how the fluids move.
The left eye is holding its own, it’s returned by itself to normal pressure. It hasn’t improved much from a retinal detachment standpoint with most of the folds still remaining from the initial trauma. Dr. Trese thought thought he did see some slight improvement.
On to some other things Dr. Trese observed: he was concerned with the aberrant vessel growth in her eyes and how the retinal vessels didn’t grow to the full edge of her retinas. My husband told him about the early on observation of Persistent Fetal Vasculation by Dr. Grace a full six months before the main event when the vision loss occurred. During the last months of last year Dr. Grace and her team had observed significant aberrant vessel growth in both her eyes. They had treated it with Avastin via injection which helped reduce the unwanted vessels significantly. Dr. Trese said this made sense based on what he was seeing but he would still like to pursue understanding why the aberrant vessel growth occurred in the first place.
He drew some blood and is having some genetic tests run. We had talked about genetic testing before, but without knowing what specific tests to run, it’s just a lot of genes and not necessarily any connection to what you may or may not have or might end up getting.
Dr. Trese said there are some mutations that are associated with retinal dysplasia, but there is no absolute known mutation for persistent fetal vasculation. He’s interested in mutations associated with retinal vascular changes and it’s always good to be able to rule out if possible. He is running a test for Nori’s disease but he doesn’t think it’s a likely candidate as much of her situation doesn’t match. He also mentioned the Frizzled 4 gene, which I wrote down, thinking I misunderstood him, but it’s a real thing.
Then there was the refraction—which I have been impatiently waiting for for months. Now that I had the measurements, I could order lenses for her glasses and sunglasses for her. I was on a bike ride today (I finally got around to training some) but I was stopping and taking calls to make sure I could get her lenses as quickly as possible. My thanks go to Erin at My Eye Dr. who is going to try to get them in for us tomorrow.
So what, if anything, will my daughter see better tomorrow with her new lenses? Don’t get too excited yet. It will hopefully pull things into better focus on her right eye, but how well is that eye functioning after months of retinal detachment as well as other insults the eye has been through? Did it heal/repair or is it permanently damaged and we’re getting some information but not a perfect picture. Second, is her brain paying attention to the right eye or is it favoring the left eye and ignoring the input from the right? We don’t know this either but we should know more soon. That part should be correctable with patching the dominant eye for a while—something you see commonly with young children.
My fondest wish would be for my daughter to recognize me without having to remember what I’m wearing, where I’m standing or by hearing my voice. Actually, I’d just be happy if she’s say from across the room, “mom, is that an elephant on the television?”
The Big Boy Update: Remember those few parenting wording changes I told you about from our meeting with Dhruti? They’re making a difference. It’s not much and it seems subtle to an adult, but children are literal creatures. My son was great all day today.
The Tiny Girl Chronicles: My husband and daughter had a very long day today, getting in late last night, arriving at the hospital at 6AM and then traveling all day to come home. He told me my daughter was such a happy and non-complaining child all day. She played with her toys, walked through the airport without complaining and put up with all the waiting and sitting that travel typically entails without a complaint.
Fitness Update: I biked thirty-six miles today. It was not without incident, but I will save that story for another day.
There were travel problems yesterday and there have been more travel problems today. I won’t digress but I can say I’m not sure any amount of cajoling and complementing my husband will make him want to be the lead parent next time. But on to the good stuff—the results are in.
I say that like we’re going to suddenly go from dismal sight to fully restored vision, which just ain’t gonna happen. But there is good news and information and…get this…a picture too. Only the picture is still in transit with my husband so I’ll save that for tomorrow.
The thing that’s the best news is the right eye’s retina is attached. It’s smooth and lays down just like a retina should, thus giving the eye the best chance for non-distorted vision. The right ocular pressure is a bit lower than last month, but within reasonable range.
You may remember my daughter’s natural lens being removed in December and during that same procedure, artificial substances were added to her eye to try and return structure and help the retina reconnect with the choroid layer behind it. Typically, without a natural lens, you would have one doosie of a prescription, say +10 to +20, but the Silicone Oil and PFO that was added to her eye is now acting as a sort of internal lens in the back of her eye. Dr. Trese measured her prescription at a +4.5 today. He said since the PFO moves around, she may have better corrected vision laying down or perhaps standing, depending on how the fluids move.
The left eye is holding its own, it’s returned by itself to normal pressure. It hasn’t improved much from a retinal detachment standpoint with most of the folds still remaining from the initial trauma. Dr. Trese thought thought he did see some slight improvement.
On to some other things Dr. Trese observed: he was concerned with the aberrant vessel growth in her eyes and how the retinal vessels didn’t grow to the full edge of her retinas. My husband told him about the early on observation of Persistent Fetal Vasculation by Dr. Grace a full six months before the main event when the vision loss occurred. During the last months of last year Dr. Grace and her team had observed significant aberrant vessel growth in both her eyes. They had treated it with Avastin via injection which helped reduce the unwanted vessels significantly. Dr. Trese said this made sense based on what he was seeing but he would still like to pursue understanding why the aberrant vessel growth occurred in the first place.
He drew some blood and is having some genetic tests run. We had talked about genetic testing before, but without knowing what specific tests to run, it’s just a lot of genes and not necessarily any connection to what you may or may not have or might end up getting.
Dr. Trese said there are some mutations that are associated with retinal dysplasia, but there is no absolute known mutation for persistent fetal vasculation. He’s interested in mutations associated with retinal vascular changes and it’s always good to be able to rule out if possible. He is running a test for Nori’s disease but he doesn’t think it’s a likely candidate as much of her situation doesn’t match. He also mentioned the Frizzled 4 gene, which I wrote down, thinking I misunderstood him, but it’s a real thing.
Then there was the refraction—which I have been impatiently waiting for for months. Now that I had the measurements, I could order lenses for her glasses and sunglasses for her. I was on a bike ride today (I finally got around to training some) but I was stopping and taking calls to make sure I could get her lenses as quickly as possible. My thanks go to Erin at My Eye Dr. who is going to try to get them in for us tomorrow.
So what, if anything, will my daughter see better tomorrow with her new lenses? Don’t get too excited yet. It will hopefully pull things into better focus on her right eye, but how well is that eye functioning after months of retinal detachment as well as other insults the eye has been through? Did it heal/repair or is it permanently damaged and we’re getting some information but not a perfect picture. Second, is her brain paying attention to the right eye or is it favoring the left eye and ignoring the input from the right? We don’t know this either but we should know more soon. That part should be correctable with patching the dominant eye for a while—something you see commonly with young children.
My fondest wish would be for my daughter to recognize me without having to remember what I’m wearing, where I’m standing or by hearing my voice. Actually, I’d just be happy if she’s say from across the room, “mom, is that an elephant on the television?”
The Big Boy Update: Remember those few parenting wording changes I told you about from our meeting with Dhruti? They’re making a difference. It’s not much and it seems subtle to an adult, but children are literal creatures. My son was great all day today.
The Tiny Girl Chronicles: My husband and daughter had a very long day today, getting in late last night, arriving at the hospital at 6AM and then traveling all day to come home. He told me my daughter was such a happy and non-complaining child all day. She played with her toys, walked through the airport without complaining and put up with all the waiting and sitting that travel typically entails without a complaint.
Fitness Update: I biked thirty-six miles today. It was not without incident, but I will save that story for another day.
Sunday, May 1, 2016
It Split Again
This isn’t about stocks and how, to my great advantage, they split at the highest of times. This is about my thumb. It seems common to have something going on with a finger from time to time for many of us. One person had surgery on a broken finger that took a long time to heal, another person had a fingernail that kept splitting, even when trimmed well-below the split line, and my husband had a long recovery after screwing his thumb (quite literally) with a power tool.
Hands are so, well, handy. We use them all day for so many things and when you’re a digit down, it can be frustrating, especially when it goes on and on. At some point during the winter— it’s been so long now I don’t remember when it began—the skin on the tip of my thumb split. It was painful but not to worry, I’d put a bandage and some medication on it and it would be good as new soon.
Easier believed than true. Every time the painful crack would close up, the skin all around it would peel back in multiple directions. The skin was dry and would catch on things and I was having to clip off skin from time to time so that it didn’t peel more. Several times this winter I thought I was about to make it free from the Valley of the Persistent Thumb Cracks and then a suddenly it would come back in full force.
I got advice from people—either solicited not. I should try putting vitamin E on it multiple times each day. Try using Crazy Glue (or the medical grade equivalent) and close it shut so it has a chance to heal. Had I been moisturizing it? Maybe I need to wear gloves a lot. Don’t forget to keep it covered with a bandage. There were more, but those are the highlights.
Now that it’s warmer weather my skin isn’t as dry and I was hoping things would resolve. To make sure I was giving the now-closed crack its best chance for staying that way, I’ve been keeping a bandage over the thumb for the majority the day this week with some type of moisturizing agent under the bandage.
Each day this week I’d pull the bandage off before getting in the tub each night to relax and look at the softer, less-peelier skin. The crack was now closed and showed no signs of imminent dermal breach.
Yesterday was our school’s auction and I knew I had lots to do physically with my hands so I went with my thumb lubed and bandaged with the intention of removing my stylish Batman bandage when I put my dress and heels on for the evening.
I remembered the dress and heels but forgot to take off the bandage. Not to worry, I got several comments on my Batman-clad thumb. I got home last night and let it air out after the long day yesterday. This morning I woke up and said something very rude and nasty in the bed, catching my husband off guard. He said, “are you okay?” I replied, “no, now the other side of my healing thumb has cracked.”
The Big Boy Update: My son and I went to dinner with my parents tonight. He didn’t want to wear his normal clothes and opted instead a mash-up of his Halloween costume with his new flip flops. I call it his, “Silver Ninja Teenage Mutant Ninja Turtle” outfit.
The Tiny Girl Chronicles: My daughter was going to Detroit today—by herself, as a four-year-old who can’t see. That’s correct, that’s what the airline had in plan for her. My husband booked their tickets via telephone call to the airline several weeks ago because they were applying refund vouchers from the last trip due to a change in plans. This morning as my husband was trying to check them in for the flight he realized he had been charged for two tickets, but only my daughter’s had been ticketed. He gets on the phone and yes, the booking agent had made several mistakes, my husband was told. Only now there is a problem because the flight my daughter’s booked on is full. Quick, my husband says, we need to leave in a few because he’s they can get us on an earlier flight. We got them out the door and they made it to the airport only to find that new flight had been cancelled…and the counter agent can’t find a flight for them. Pseudo-panic, only because my daughter has to be in the hospital at 6AM tomorrow morning and it’s a long drive. Happy ending though, they were able to get on another flight and in just a few minutes they should be landing in Detroit, not that much later than their original arrival time. Interesting travel day though.
Hands are so, well, handy. We use them all day for so many things and when you’re a digit down, it can be frustrating, especially when it goes on and on. At some point during the winter— it’s been so long now I don’t remember when it began—the skin on the tip of my thumb split. It was painful but not to worry, I’d put a bandage and some medication on it and it would be good as new soon.
Easier believed than true. Every time the painful crack would close up, the skin all around it would peel back in multiple directions. The skin was dry and would catch on things and I was having to clip off skin from time to time so that it didn’t peel more. Several times this winter I thought I was about to make it free from the Valley of the Persistent Thumb Cracks and then a suddenly it would come back in full force.
I got advice from people—either solicited not. I should try putting vitamin E on it multiple times each day. Try using Crazy Glue (or the medical grade equivalent) and close it shut so it has a chance to heal. Had I been moisturizing it? Maybe I need to wear gloves a lot. Don’t forget to keep it covered with a bandage. There were more, but those are the highlights.
Now that it’s warmer weather my skin isn’t as dry and I was hoping things would resolve. To make sure I was giving the now-closed crack its best chance for staying that way, I’ve been keeping a bandage over the thumb for the majority the day this week with some type of moisturizing agent under the bandage.
Each day this week I’d pull the bandage off before getting in the tub each night to relax and look at the softer, less-peelier skin. The crack was now closed and showed no signs of imminent dermal breach.
Yesterday was our school’s auction and I knew I had lots to do physically with my hands so I went with my thumb lubed and bandaged with the intention of removing my stylish Batman bandage when I put my dress and heels on for the evening.
I remembered the dress and heels but forgot to take off the bandage. Not to worry, I got several comments on my Batman-clad thumb. I got home last night and let it air out after the long day yesterday. This morning I woke up and said something very rude and nasty in the bed, catching my husband off guard. He said, “are you okay?” I replied, “no, now the other side of my healing thumb has cracked.”
The Big Boy Update: My son and I went to dinner with my parents tonight. He didn’t want to wear his normal clothes and opted instead a mash-up of his Halloween costume with his new flip flops. I call it his, “Silver Ninja Teenage Mutant Ninja Turtle” outfit.
The Tiny Girl Chronicles: My daughter was going to Detroit today—by herself, as a four-year-old who can’t see. That’s correct, that’s what the airline had in plan for her. My husband booked their tickets via telephone call to the airline several weeks ago because they were applying refund vouchers from the last trip due to a change in plans. This morning as my husband was trying to check them in for the flight he realized he had been charged for two tickets, but only my daughter’s had been ticketed. He gets on the phone and yes, the booking agent had made several mistakes, my husband was told. Only now there is a problem because the flight my daughter’s booked on is full. Quick, my husband says, we need to leave in a few because he’s they can get us on an earlier flight. We got them out the door and they made it to the airport only to find that new flight had been cancelled…and the counter agent can’t find a flight for them. Pseudo-panic, only because my daughter has to be in the hospital at 6AM tomorrow morning and it’s a long drive. Happy ending though, they were able to get on another flight and in just a few minutes they should be landing in Detroit, not that much later than their original arrival time. Interesting travel day though.
Saturday, April 30, 2016
Auction
I just got in from being at our school’s auction for the past eight hours. I had sneakers (I love that old term for athletic shoes) but I spent much of the time in a dress and heels and now my feet are angry at me. I can run a marathon and my feet never bother me, but put me in heels and the change of angle, additional balance needs and pressure on toes from being force forward due to angle and my feet complain.
I didn’t start this post to write about my feet though. Sometimes this happens—I start a blog post, planning on writing about one mundane thing that happened in my day and I get distracted by a side issue or nuance of the story and wander into the land of digression.
Where was I? Oh, yes, about the auction. We’ve been planing it since close to the start of the school year. The group on the committee was small but we were able to bring in more people who then brought in more people and our committee ended up at close to fifteen people, all who were interested in helping and willing to take on sections of the auction and run autonomously.
Usually just before the auction things felt frantic as we scrambled to get it all done and finalized in time. This year our final meeting before tonight was more to make sure we didn’t miss anything and confirm our final plan.
I walked into the space a few hours after setup began and I was wowed by the transformation of the space. We hosted the event at an art studio that had old wood floors and a warm, welcoming yet open feel. We finished the set up, I got into my heels and we started to welcome the guests.
I ate a lot of the catered food and drank water and watched the other people drink wine, beer and a special cocktail one of the staff, who is a bartender on the weekends, made especially for the event. The social hour was so successful it was hard to get people into the live auction area, but we got started eventually.
We raised a lot of money, thanks to some very generous donations from our families (beach home rentals, authentic cultural dinners, tickets to sports games, etc.) As soon as cleanup began I got back into my sneakers and start the cleanup.
One of the things we offered this year was a mystery box tower. There were thirty boxes wrapped in different papers. You could purchase one box for $50 Inside each box was something, like a gift certificate, free movie tickets or a handmade child’s upon. One of the boxes contained a $500 Apple store gift card. At the end of the evening people got the box number they signed up for. I told them to ask my husband when he got in and I was sure he’d sign up. Then, on second thought, I told them I’d sign up for number thirteen, my husband’s favorite number.
As I was starting cleanup, Liz, the person who had organized the mystery boxes came over to me and said, “did you hear?” I thought she was talking about the auction totals for the night and said I hadn’t. She said, “you won the mystery box. It was number thirteen.”
I told my husband and he decided since it was his number, I should let him have it.
The Big Boy Update: My son was playing with some of the boys (Sophomors in high school) that were visiting my neighbor’s son tonight. He was having fun playing with them, but, his sister (and our sitter for the night) told me, “he has a thing about butts.” I told her it was a popular topic at this age. She said he was hitting people on the butt, especially her, and then sometimes in the front. I told her I would have a talk with him and let him know we don’t touch people in those areas because they are private.
The Tiny Girl Chronicles: My daughter was invited next door to watch a movie in their new movie room. I’m not sure how she’s sitting proximity-wise in front of their large projection screen, but she must be enjoying it because she didn’t come home.
I didn’t start this post to write about my feet though. Sometimes this happens—I start a blog post, planning on writing about one mundane thing that happened in my day and I get distracted by a side issue or nuance of the story and wander into the land of digression.
Where was I? Oh, yes, about the auction. We’ve been planing it since close to the start of the school year. The group on the committee was small but we were able to bring in more people who then brought in more people and our committee ended up at close to fifteen people, all who were interested in helping and willing to take on sections of the auction and run autonomously.
Usually just before the auction things felt frantic as we scrambled to get it all done and finalized in time. This year our final meeting before tonight was more to make sure we didn’t miss anything and confirm our final plan.
I walked into the space a few hours after setup began and I was wowed by the transformation of the space. We hosted the event at an art studio that had old wood floors and a warm, welcoming yet open feel. We finished the set up, I got into my heels and we started to welcome the guests.
I ate a lot of the catered food and drank water and watched the other people drink wine, beer and a special cocktail one of the staff, who is a bartender on the weekends, made especially for the event. The social hour was so successful it was hard to get people into the live auction area, but we got started eventually.
We raised a lot of money, thanks to some very generous donations from our families (beach home rentals, authentic cultural dinners, tickets to sports games, etc.) As soon as cleanup began I got back into my sneakers and start the cleanup.
One of the things we offered this year was a mystery box tower. There were thirty boxes wrapped in different papers. You could purchase one box for $50 Inside each box was something, like a gift certificate, free movie tickets or a handmade child’s upon. One of the boxes contained a $500 Apple store gift card. At the end of the evening people got the box number they signed up for. I told them to ask my husband when he got in and I was sure he’d sign up. Then, on second thought, I told them I’d sign up for number thirteen, my husband’s favorite number.
As I was starting cleanup, Liz, the person who had organized the mystery boxes came over to me and said, “did you hear?” I thought she was talking about the auction totals for the night and said I hadn’t. She said, “you won the mystery box. It was number thirteen.”
I told my husband and he decided since it was his number, I should let him have it.
The Big Boy Update: My son was playing with some of the boys (Sophomors in high school) that were visiting my neighbor’s son tonight. He was having fun playing with them, but, his sister (and our sitter for the night) told me, “he has a thing about butts.” I told her it was a popular topic at this age. She said he was hitting people on the butt, especially her, and then sometimes in the front. I told her I would have a talk with him and let him know we don’t touch people in those areas because they are private.
The Tiny Girl Chronicles: My daughter was invited next door to watch a movie in their new movie room. I’m not sure how she’s sitting proximity-wise in front of their large projection screen, but she must be enjoying it because she didn’t come home.
Friday, April 29, 2016
Chaos
We met with my son’s (and daughter’s) play therapist, Dhruti, today. She reviewed with us the observations she had from the one hour session she recorded of my son and me doing tasks in her office. There are things that need to be addressed, on his side as well as ours. Some of the things we learned today were how to help him with the way we offer choices and give direction. She is also going to work with us and him in future sessions to give him some tools so he can handle things better.
She said a lot of the time it’s like he’s dealing with a chaotic situation in his head. Information is coming in and sometimes that information is too fast, too much, and he tries to handle the situation by exerting control over small aspects of his world. This comes across as him being defiant or controlling, but she said it’s not that at all, it’s his way of coping.
She said he has a self-esteem issue as well and some of the need to connect and unsureness of how to do so stems from this as well. She explained that information comes in to him quickly and he doesn’t know how to compartmentalize it so he can move on to the next input. As a result, he is missing social queues which factors into the social situation.
From our side, my husband and I left with a list of notes and some excellent guidance on how we can do small things to modify our behavior to help him. She said we would be amazed in how just a few changes from us will make a big difference in him. Three things:
1) Less question: he may or may not be ready or able to answer as many questions as we’re asking him, especially about making decisions on minor things. This leads into the next thing…
2) Less choices: yes, give him choices, but don’t let him choose everything. It’s compounding his feelings of chaos in his mind. Make choices for him, don’t negotiate, don’t let him change your decision once you’ve made it. And the big one…
3) I need to chill out. This was a bit of a joke, but I do want to be the best parent I can be and Dhruti laughed at me and told me to not worry so much, we were doing a great job of being parents.
She also said this is a short-term thing, maybe only three months and we’ll see a huge difference in his behavior and confidence. I’m looking forward to him feeling more comfortable and happy being who he is.
The Big Boy Update: My son asked me the other day, “mom, can we walk to school to save electricity?” I told him it was a bit far to walk, but we were hoping to bike to school with him and his sister on the back of our bikes and would that do. He was skeptical, not knowing if biking would save electricity in the same way walking did, but I think I convinced him.
The Tiny Girl Chronicles: My daughter leaves on Sunday with my husband to return to Detroit for another evaluation under anesthesia. We will hopefully leave with a refraction on the right eye for a prescription that we’ll get as soon as possible in her glasses. Her left lens is scratched and will need to be replaced. It is here that I have to confess, I was the one who scratched the lens. It doesn’t block vision when I look through the eyepiece, so for another few days it will be fine until we have more information from her doctor.
Fitness Update: I got back on my bike today. I rode with my triathlon partner who is also the husband of my running partner and best friend. He rode alongside me for eleven miles, possibly because that’s the pace he would have gone, but probably because he was being nice and riding at my speed. He gave me many tips about riding that will serve me well when I do the triathlon later next month. It was a great day for a ride. I got home without being tired, which is a good thing since I have to swim 1500 meters in a lake before the bike ride, ride an additional twenty miles and then run ten kilometers before I finish the race.
She said a lot of the time it’s like he’s dealing with a chaotic situation in his head. Information is coming in and sometimes that information is too fast, too much, and he tries to handle the situation by exerting control over small aspects of his world. This comes across as him being defiant or controlling, but she said it’s not that at all, it’s his way of coping.
She said he has a self-esteem issue as well and some of the need to connect and unsureness of how to do so stems from this as well. She explained that information comes in to him quickly and he doesn’t know how to compartmentalize it so he can move on to the next input. As a result, he is missing social queues which factors into the social situation.
From our side, my husband and I left with a list of notes and some excellent guidance on how we can do small things to modify our behavior to help him. She said we would be amazed in how just a few changes from us will make a big difference in him. Three things:
1) Less question: he may or may not be ready or able to answer as many questions as we’re asking him, especially about making decisions on minor things. This leads into the next thing…
2) Less choices: yes, give him choices, but don’t let him choose everything. It’s compounding his feelings of chaos in his mind. Make choices for him, don’t negotiate, don’t let him change your decision once you’ve made it. And the big one…
3) I need to chill out. This was a bit of a joke, but I do want to be the best parent I can be and Dhruti laughed at me and told me to not worry so much, we were doing a great job of being parents.
She also said this is a short-term thing, maybe only three months and we’ll see a huge difference in his behavior and confidence. I’m looking forward to him feeling more comfortable and happy being who he is.
The Big Boy Update: My son asked me the other day, “mom, can we walk to school to save electricity?” I told him it was a bit far to walk, but we were hoping to bike to school with him and his sister on the back of our bikes and would that do. He was skeptical, not knowing if biking would save electricity in the same way walking did, but I think I convinced him.
The Tiny Girl Chronicles: My daughter leaves on Sunday with my husband to return to Detroit for another evaluation under anesthesia. We will hopefully leave with a refraction on the right eye for a prescription that we’ll get as soon as possible in her glasses. Her left lens is scratched and will need to be replaced. It is here that I have to confess, I was the one who scratched the lens. It doesn’t block vision when I look through the eyepiece, so for another few days it will be fine until we have more information from her doctor.
Fitness Update: I got back on my bike today. I rode with my triathlon partner who is also the husband of my running partner and best friend. He rode alongside me for eleven miles, possibly because that’s the pace he would have gone, but probably because he was being nice and riding at my speed. He gave me many tips about riding that will serve me well when I do the triathlon later next month. It was a great day for a ride. I got home without being tired, which is a good thing since I have to swim 1500 meters in a lake before the bike ride, ride an additional twenty miles and then run ten kilometers before I finish the race.
Thursday, April 28, 2016
Remember, Mom, I Don’t See Very Well
“Remember, mom, I don’t see very well” was something my daughter said to me one day a while back. It was one of those times where you realize other people, namely my daughter, are handling things better than I am.
As a parent, I desperately want things to improve, for progress to be made, for her to be able to see better. One of the ways I manage my expectations is by constantly testing her. I’m not overtly testing her, but instead, take any opportunity that circumstances may present to ask her a question such as, “do you see the yellow truck passing us?” Since my daughter isn’t interested in giving us updates—can’t give us updates really—on the current state of her vision, I try to gather information whenever I can. Ultimately though, I’m testing her and in so doing, I might be frustrating her.
We were doing something, I don’t remember what it was now, but I asked her if she could see something that I thought she might be able to see. We think, but aren’t sure, that her far vision is improving in the right eye. When I asked her, my daughter calmly said, “remember, mom, I don’t see very well.” I told her that was okay, there were other ways to find out about the thing we were doing.
It’s a fine line, testing versus not pressing her. We need to know how things are going because her doctors need that information when we see them to help with their plan going forward. I think my husband does a better job of leaving it alone and letting her behavior tell us things than I do. But then again, he’s a much more patient person than I am.
The Big Boy Update: Tonight at dinner my son called to me and told me, “look, I’m folding this over”. I was confused at what he was doing and why he was folding the corner of his paper place mat over. We were at an Italian restaurant and he pointed to a picture of the colosseum on the page and said, “I want to go there”. It was then that I realized I’d shown him how to dog ear pages in a catalog to mark the things you like so you could go back to them later. Of particular note, the catalog was at the hair cutting place while he was waiting to get his hair cut. The catalog was of ladies clothing. He was marking pages with shirts he thought I would look “beautiful” in.
The Tiny Girl Chronicles: My daughter saw her play therapist today. They have been working on making plans together. She’s been teaching my daughter how to plan out things because in some cases, specifically with a visual impairment, planning out how you’re going to accomplish something is an important skill to have. She said my daughter is liking very much to make plans and tell her all about what she is going to do to get a certain difficult job done.
As a parent, I desperately want things to improve, for progress to be made, for her to be able to see better. One of the ways I manage my expectations is by constantly testing her. I’m not overtly testing her, but instead, take any opportunity that circumstances may present to ask her a question such as, “do you see the yellow truck passing us?” Since my daughter isn’t interested in giving us updates—can’t give us updates really—on the current state of her vision, I try to gather information whenever I can. Ultimately though, I’m testing her and in so doing, I might be frustrating her.
We were doing something, I don’t remember what it was now, but I asked her if she could see something that I thought she might be able to see. We think, but aren’t sure, that her far vision is improving in the right eye. When I asked her, my daughter calmly said, “remember, mom, I don’t see very well.” I told her that was okay, there were other ways to find out about the thing we were doing.
It’s a fine line, testing versus not pressing her. We need to know how things are going because her doctors need that information when we see them to help with their plan going forward. I think my husband does a better job of leaving it alone and letting her behavior tell us things than I do. But then again, he’s a much more patient person than I am.
The Big Boy Update: Tonight at dinner my son called to me and told me, “look, I’m folding this over”. I was confused at what he was doing and why he was folding the corner of his paper place mat over. We were at an Italian restaurant and he pointed to a picture of the colosseum on the page and said, “I want to go there”. It was then that I realized I’d shown him how to dog ear pages in a catalog to mark the things you like so you could go back to them later. Of particular note, the catalog was at the hair cutting place while he was waiting to get his hair cut. The catalog was of ladies clothing. He was marking pages with shirts he thought I would look “beautiful” in.
The Tiny Girl Chronicles: My daughter saw her play therapist today. They have been working on making plans together. She’s been teaching my daughter how to plan out things because in some cases, specifically with a visual impairment, planning out how you’re going to accomplish something is an important skill to have. She said my daughter is liking very much to make plans and tell her all about what she is going to do to get a certain difficult job done.
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