I got a new bike today. I’ve had a bicycle for about three years and decided I’d better get an upgrade. The one I purchased at the time was an entry-level bike at an entry-level price because I didn’t know how much I would like or want to ride. Until that time I hadn’t biked since I was a child.
It turned out I liked to bike and my husband and I liked to bike our children around on the backs of our bicycles when the weather was nice. The gear changing was okay, but the overall gearing was set up for general riding and I’ve started riding more. Specifically, I’m riding thirty or more miles at a time and a small advantage in gear ratios makes a significant difference over a long ride.
The bicycle I got wasn’t much more expensive than my original cycle but it’s more suited to how I’ve been riding. I also decided to get clip-in shoes and petals—which sounded very high-end pro-cyclist when I first saw them. The thing about the clip-in shoes is how you can pedal differently. With sneakers alone, you’re pushing down at one point in each revolution. With clip-ins, you’re pedaling down, pulling back, dragging up and lifting over each stroke. It makes for more efficient muscle use and can reduce fatigue over long rides.
Two weeks to go before the triathlon. I’m going to do a bike/run segment next week and see how it goes with the new cycle.
The Big Boy Update: My son was playing with something yesterday and was excited about it. I heard him exclaim, “it’s off the hook!”
The Tiny Girl Chronicles: My son was playing Sonic the Hedgehog video game from our decades old Sega Genesis machine. At the start, the SEGA logo is displayed and a two-note rendition of the word “Sega” is sung. Every time this happened my daughter would sing along saying, “Make Up”.
Fitness Update: That new bike I just wrote about from above? Well, I’ve already had an accident on it. I got on it in the driveway to demonstrate to my husband how the clip in shoes work and due to lack of experience I didn’t get the shoe rotated out of the clip as I stopped, falling sideways off and landing straight on my pelvis. It looked bad. It felt bad—but it was a good spot in which to land given all the other options. I’ve taken some NSAIDs and hopefully I’ll just feel a little bruised in the morning.
Saturday, May 7, 2016
Friday, May 6, 2016
Breakfast For Dinner
My husband and I thought it would be fun to have breakfast for dinner with the children one night as something they’d never done. Weekday mornings are time-constrained and we don’t have a sit-down meal as a family but instead have the children sit at the counter to eat their meals. Weekend mornings we commonly let everyone get up and get their own breakfast with help from us where needed. We sometimes have family breakfast, but it’s not often.
Today was a teacher workday so last night was the start of our weekend and looked like a good day with my husband’s work schedule for our breakfast for dinner evening. Each child had their own after school activity but we told them what we were planning for the evening. They were excited about pancakes, bacon and scrambled eggs for dinner.
My husband made the meal with help from both children. We ate everything he’d prepared and would have all gone for more pancakes if there were any more available. My son told Uncle Jonathan today that he had two breakfasts yesterday, one in the morning and one at night. I think we’re going to have to do breakfast for dinner again sometime soon.
The Big Boy Tiny Girl Uncle Jonathan Update: We haven’t had as much opportunity to see Uncle Jonathan as we used to when he lived closer so we all were excited to have him over for dinner tonight. He talked with my son about Power Rangers and my daughter couldn’t get enough of him lifting her up and over his head. As we sat down to dinner my son said, “It’s good to have dinner with Jon because he’s my first best friend.” Not to be outdone, my daughter said, “he’s my best friend that picks me up in the air.”
Today was a teacher workday so last night was the start of our weekend and looked like a good day with my husband’s work schedule for our breakfast for dinner evening. Each child had their own after school activity but we told them what we were planning for the evening. They were excited about pancakes, bacon and scrambled eggs for dinner.
My husband made the meal with help from both children. We ate everything he’d prepared and would have all gone for more pancakes if there were any more available. My son told Uncle Jonathan today that he had two breakfasts yesterday, one in the morning and one at night. I think we’re going to have to do breakfast for dinner again sometime soon.
The Big Boy Tiny Girl Uncle Jonathan Update: We haven’t had as much opportunity to see Uncle Jonathan as we used to when he lived closer so we all were excited to have him over for dinner tonight. He talked with my son about Power Rangers and my daughter couldn’t get enough of him lifting her up and over his head. As we sat down to dinner my son said, “It’s good to have dinner with Jon because he’s my first best friend.” Not to be outdone, my daughter said, “he’s my best friend that picks me up in the air.”
Thursday, May 5, 2016
Okay?
What’s in a word? We’ve starting taking my son to see the same play therapist we’re taking my daughter to. We realized he was likely affected by his sister’s eye situation, but we weren’t sure what was a result of seeing his sister get “special attention” with the doctors, what was his personality, and what was basic boy versus girl behavior.
We had a meeting with his teachers at school in which they talked to us about some observations they had had behaviorally where my son couldn’t keep his hands off other children and had some challenges focusing while in the classroom. I’m ever so glad we have Dhruti, our children’s therapist, because in just two meetings we have vastly more information than we did before and we have a greater understanding of what’s going on in his mind.
The first meeting was with my son and me only, in which we did specific tasks (games in bags with instructions I read out to him). The session was recorded and my son thought the entire hour was good fun. Later in the week my husband and I met with Dhruti to review the videoed session and get her advice and plans on how to proceed.
The first thing she said was that what’s going on is age-based and correctable—and quickly so. She said with a combination of giving him some skills as well as some ways we could change things we were doing we would see quick and dramatic results. He doesn’t have development issues, although there are some things he’s having challenges with because of how he’s managing his world right now but they should correct themselves as we move forward.
This is good news. We’re looking forward to a plan for us and some specialized “lessons”, as they call it in Montessori school. She told us that the majority of the time my son is living in a chaotic mind. He’s not being defiant (behavior we thought we were getting all the time) but trying to put together things happening in a very crowded brain. She said he’s lacking some skills in compartmentalization and as such, everything is always up in the air and he’s just overloaded with processing everything.
For example, having a calendar on the refrigerator in which we can cross off the days until an event (could be the weekend or vacation or party) will help relieve him from having to keep it on his mind. He’s running his life without the proper skills to mentally say, “I don’t have to worry about that now” or “that’s finished and I don’t have to think about it any more.” I don’t have a lot of additional examples, but with I’m sure I’ll have more soon as we move further into his therapy.
Dhruti said my son has very low self-esteem as well. There was a bit at the beginning of the recorded session in which we were supposed to play with two stuffed animals. My son selected the frog and the play between my dog and his frog went from friendly to aggressive fairly quickly. Then, my son said something interesting, he said, “my frog hates himself.” Wow. I’m not a trained therapist, but I knew that was something important.
Dhruti showed us example after example on the tape where my son made a choice and then changed to another option immediately afterwards. For example, I’d say, “where do you want the pretend grocery store to be on the table?” He pointed to one of the corners so I moved the dog to the corner and then my son said, “no, it’s going to be in the middle.” That doesn’t sound important at all to me; children change their minds all the time—but it was. He’s struggling internally with chaos and he’s trying to control the world around him to try and lessen the chaos.
Choices are important, but a child shouldn’t be asked to manage a family or all the decisions in a day—it’s too much on them. They’re not equipped. I mentioned in a post a day or two ago that children are literal creatures. The most important and immediate change she told my husband and me to implement was how we were handling things with both words and expectations with him. Instead of giving him more choices to try and help with his need to have control, we should be giving him less. Yes, let him pick milk or orange juice, but calmly state other things like, “we’re eating dinner at the table tonight; your seat is here.”
I didn’t think that would work, but it did. He didn’t balk at some decisions being made for him in a non-authorative way. The next part was the most interesting to me. Dhruti said, “when you make a decision for him such as, ‘let’s move on to the next activity’ in the video, you’re actually saying, ‘let’s move on to the next activity, okay?’" There is a huge difference in the two sentences in for my son. The first is a statement, the second is a question, and a question that ends with a request for my son to evaluate the situation and make a decision.”
As an adult, that added, “okay” at the end is commonly understood to be, “do you hear what I’m saying” or “let me know if you disagree with this plan.” To him, it means he has to think about what’s happening and make the decision himself.
Dhruti said from my son’s side, she was going to give him some tools/skills to help compartmentalize things so he could put them out of his mind and focus on what he’s currently doing, lowering his frustration and stress. Today, I picked him up from school and asked him what work he did during class. He told me after lunch (for two hours) he did nothing but stand around and lie on the floor. He’s stuck in chaos and isn’t able to move forward because he’s still processing what’s been happening.
I’m looking forward to the next few months for my son. I think Dhruti is going to be a great help to both him and our family.
The Big Boy Update: My son has been mad about the Power Rangers lately. There are a few different shows, but he knows which one he wants to watch. I thought these were old shows but they’re new and they are build around merchandising products—featured in the show by the characters and could you please put them on my wish list mom. As I sat holding my son’s hand to watch an episode before bed last night my son told me all the names of the characters as the theme song began and they were each introduced. He would shout out, “Black Power Ranger”, “Green Power Ranger”, etc. The last character came on and he paused for a second and said, “Whatever Power Ranger”. I thought he had forgotten what color that girl was, but no, she wasn’t in the show at all. If I figure out what color the “Whatever Power Ranger” is, I’ll let you know.
The Tiny Girl Chronicles: I asked my daughter on the way home from school today about her orientation and mobility session with Jane at the museum (an off-site trip they had scheduled for the two of them.) She told me about butterflies, animals, trees and other things that you have to be able to see to know are there. I asked her if she had been able to see things more easily with her new lenses to which she impatiently replied, “remember, I told you a long time ago [yesterday], a lot lot lot lot better.” I’m anxiously awaiting an email from her O&M teacher to get her opinion on how the day went now.
We had a meeting with his teachers at school in which they talked to us about some observations they had had behaviorally where my son couldn’t keep his hands off other children and had some challenges focusing while in the classroom. I’m ever so glad we have Dhruti, our children’s therapist, because in just two meetings we have vastly more information than we did before and we have a greater understanding of what’s going on in his mind.
The first meeting was with my son and me only, in which we did specific tasks (games in bags with instructions I read out to him). The session was recorded and my son thought the entire hour was good fun. Later in the week my husband and I met with Dhruti to review the videoed session and get her advice and plans on how to proceed.
The first thing she said was that what’s going on is age-based and correctable—and quickly so. She said with a combination of giving him some skills as well as some ways we could change things we were doing we would see quick and dramatic results. He doesn’t have development issues, although there are some things he’s having challenges with because of how he’s managing his world right now but they should correct themselves as we move forward.
This is good news. We’re looking forward to a plan for us and some specialized “lessons”, as they call it in Montessori school. She told us that the majority of the time my son is living in a chaotic mind. He’s not being defiant (behavior we thought we were getting all the time) but trying to put together things happening in a very crowded brain. She said he’s lacking some skills in compartmentalization and as such, everything is always up in the air and he’s just overloaded with processing everything.
For example, having a calendar on the refrigerator in which we can cross off the days until an event (could be the weekend or vacation or party) will help relieve him from having to keep it on his mind. He’s running his life without the proper skills to mentally say, “I don’t have to worry about that now” or “that’s finished and I don’t have to think about it any more.” I don’t have a lot of additional examples, but with I’m sure I’ll have more soon as we move further into his therapy.
Dhruti said my son has very low self-esteem as well. There was a bit at the beginning of the recorded session in which we were supposed to play with two stuffed animals. My son selected the frog and the play between my dog and his frog went from friendly to aggressive fairly quickly. Then, my son said something interesting, he said, “my frog hates himself.” Wow. I’m not a trained therapist, but I knew that was something important.
Dhruti showed us example after example on the tape where my son made a choice and then changed to another option immediately afterwards. For example, I’d say, “where do you want the pretend grocery store to be on the table?” He pointed to one of the corners so I moved the dog to the corner and then my son said, “no, it’s going to be in the middle.” That doesn’t sound important at all to me; children change their minds all the time—but it was. He’s struggling internally with chaos and he’s trying to control the world around him to try and lessen the chaos.
Choices are important, but a child shouldn’t be asked to manage a family or all the decisions in a day—it’s too much on them. They’re not equipped. I mentioned in a post a day or two ago that children are literal creatures. The most important and immediate change she told my husband and me to implement was how we were handling things with both words and expectations with him. Instead of giving him more choices to try and help with his need to have control, we should be giving him less. Yes, let him pick milk or orange juice, but calmly state other things like, “we’re eating dinner at the table tonight; your seat is here.”
I didn’t think that would work, but it did. He didn’t balk at some decisions being made for him in a non-authorative way. The next part was the most interesting to me. Dhruti said, “when you make a decision for him such as, ‘let’s move on to the next activity’ in the video, you’re actually saying, ‘let’s move on to the next activity, okay?’" There is a huge difference in the two sentences in for my son. The first is a statement, the second is a question, and a question that ends with a request for my son to evaluate the situation and make a decision.”
As an adult, that added, “okay” at the end is commonly understood to be, “do you hear what I’m saying” or “let me know if you disagree with this plan.” To him, it means he has to think about what’s happening and make the decision himself.
Dhruti said from my son’s side, she was going to give him some tools/skills to help compartmentalize things so he could put them out of his mind and focus on what he’s currently doing, lowering his frustration and stress. Today, I picked him up from school and asked him what work he did during class. He told me after lunch (for two hours) he did nothing but stand around and lie on the floor. He’s stuck in chaos and isn’t able to move forward because he’s still processing what’s been happening.
I’m looking forward to the next few months for my son. I think Dhruti is going to be a great help to both him and our family.
The Big Boy Update: My son has been mad about the Power Rangers lately. There are a few different shows, but he knows which one he wants to watch. I thought these were old shows but they’re new and they are build around merchandising products—featured in the show by the characters and could you please put them on my wish list mom. As I sat holding my son’s hand to watch an episode before bed last night my son told me all the names of the characters as the theme song began and they were each introduced. He would shout out, “Black Power Ranger”, “Green Power Ranger”, etc. The last character came on and he paused for a second and said, “Whatever Power Ranger”. I thought he had forgotten what color that girl was, but no, she wasn’t in the show at all. If I figure out what color the “Whatever Power Ranger” is, I’ll let you know.
The Tiny Girl Chronicles: I asked my daughter on the way home from school today about her orientation and mobility session with Jane at the museum (an off-site trip they had scheduled for the two of them.) She told me about butterflies, animals, trees and other things that you have to be able to see to know are there. I asked her if she had been able to see things more easily with her new lenses to which she impatiently replied, “remember, I told you a long time ago [yesterday], a lot lot lot lot better.” I’m anxiously awaiting an email from her O&M teacher to get her opinion on how the day went now.
Wednesday, May 4, 2016
To See What Can Be Seen
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.”
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.”
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.
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