We have an Amazon Echo in our kitchen. If you haven’t heard about it, it’s a black cylinder that does things when you ask it questions starting with the word, “Alexa…” Alexa can do many amazing things and we don’t even begin to take full advantage of her, but she does do a few things we do all the time in our house.
The top three are asking Alexa to play some song or music. My children don’t quite have the vocal range for Alexa to understand them but sometimes they get lucky. I also use Alexa to play my audio book from Audible. I get in the car and play my book over Bluetooth and then come in the house and say, “Alexa, play my audio book.” She knows what my current audio book is, figures out the last location I was listening to and picks up where I left off.
The third thing we use Alexa for is to add things to the shopping list. Anyone—including the children—can ask Alexa to add something to the shopping list. That list is available whenever my husband or I go to the store and as a result, we’re always on top of our shopping needs.
Alexa has become pretty useful as far as I’m concerned. I sometimes even forget where I am and don’t remember that the radio in the car does, in fact, respond to voice commands when I press the button, but isn’t named Alexa. I was driving along with my daughter in the back seat, held down the voice command button in the Tesla and said, “Alexa, play Piano Man by Billy Joel”. The car did nothing, not understanding me. My daughter said from the back seat, “Mom, Alexa isn’t in the car.”
The Big Boy Update: At dinner two nights ago we were asking my son about his day at school. After too many questions he said, “can we just not talk about that right now?”
The Tiny Girl Chronicles: I reminded my daughter to wipe her mouth after finishing her meal and she could be excused. She wiped and then said, “do I look clean and shiny?”
Monday, February 29, 2016
Sunday, February 28, 2016
The Motor Club Meet-up
There are more Tesla cars sold every month. Before we bought ours I don’t think I’d ever seen one on the road. After we had ours, seeing one a week was about average (and I was looking). Now, only a year-and-a-half later, I commonly see multiple per day. My husband told me there was a local group of Tesla owners that would be meeting after lunch on Saturday and did I want to go?
I called my mother to see if she could watch the children and we planned to go. We didn’t know how many people would show up, but it was an opportunity to talk with other owners and discuss the company and cars.
We arrived and watched as overall about ten Tesla cars pulled up. Every car that arrived was a Model S car. This wasn’t overly surprising: the Roadster only had about two-thousand ever produced and the Model X has probably had only about thousand delivered. So here’s the interesting thing about our little group on Saturday: we all had the same car.
Yes, there were differences in color. But you could see that and the leather color when the car drove up. There were some wheel options also visible from the exterior. The cars have had a variety of battery sizes and performance options, but you can tell that from the number and letter(s) on the back of the car and for the most part it’s just fast versus even-faster. So what did we all do for the next two hours? We stood around and talked.
Several owners popped open their trunks because they had the rear-facing child seats from Tesla Motors which are interesting and different from most car seat configurations. Other than that we talked about when people purchased their cars and if they were pre- or post-autopilot hardware. It was east to tell because you could look at the front of the car and see one of the sensors whereas on our car (pre-autopilot) we have a smooth span of plastic.
The only “driving” of the cars was done via a) the key fob to “summon” the car towards them or b) via the phone app. Oh, and then there were autopilot parking demonstrations: press the park button, select park forwards or backwards and exit the car while your car parks smoothly, cleanly and perfectly accurately between two other cars.
Every person we met was friendly and kind. There were several couples and some with children (who were decidedly not as interested in the cars as the adults were.) I think we’ll go back next meeting to see if anyone has a Model X because I’d love to get a chance to see one.
The Big Boy Update: I don’t know what precipitated it but my son came into the kitchen this morning and said, “mom, I don’t want to move from this house.” I told him we didn’t have any plans to, that we loved our house. He said that was good because he wanted to live here forever. I told him someday he might grow up and want to live somewhere else and had he thought about interesting places he might want to see? He said, “what about the Statue of Liberty?” I told him that was in New York and that would be a great place to see someday.
The Tiny Girl Chronicles: My daughter played the teacher game with Mimi today. She and Mimi did a lot of pretend play regarding school and teachers. My mother remarked how my daughter has gotten much more interested in imaginative play lately. I think it was about this time last year when my son, eleven months older, exhibited the same burst in his imagination.
I called my mother to see if she could watch the children and we planned to go. We didn’t know how many people would show up, but it was an opportunity to talk with other owners and discuss the company and cars.
We arrived and watched as overall about ten Tesla cars pulled up. Every car that arrived was a Model S car. This wasn’t overly surprising: the Roadster only had about two-thousand ever produced and the Model X has probably had only about thousand delivered. So here’s the interesting thing about our little group on Saturday: we all had the same car.
Yes, there were differences in color. But you could see that and the leather color when the car drove up. There were some wheel options also visible from the exterior. The cars have had a variety of battery sizes and performance options, but you can tell that from the number and letter(s) on the back of the car and for the most part it’s just fast versus even-faster. So what did we all do for the next two hours? We stood around and talked.
Several owners popped open their trunks because they had the rear-facing child seats from Tesla Motors which are interesting and different from most car seat configurations. Other than that we talked about when people purchased their cars and if they were pre- or post-autopilot hardware. It was east to tell because you could look at the front of the car and see one of the sensors whereas on our car (pre-autopilot) we have a smooth span of plastic.
The only “driving” of the cars was done via a) the key fob to “summon” the car towards them or b) via the phone app. Oh, and then there were autopilot parking demonstrations: press the park button, select park forwards or backwards and exit the car while your car parks smoothly, cleanly and perfectly accurately between two other cars.
Every person we met was friendly and kind. There were several couples and some with children (who were decidedly not as interested in the cars as the adults were.) I think we’ll go back next meeting to see if anyone has a Model X because I’d love to get a chance to see one.
The Big Boy Update: I don’t know what precipitated it but my son came into the kitchen this morning and said, “mom, I don’t want to move from this house.” I told him we didn’t have any plans to, that we loved our house. He said that was good because he wanted to live here forever. I told him someday he might grow up and want to live somewhere else and had he thought about interesting places he might want to see? He said, “what about the Statue of Liberty?” I told him that was in New York and that would be a great place to see someday.
The Tiny Girl Chronicles: My daughter played the teacher game with Mimi today. She and Mimi did a lot of pretend play regarding school and teachers. My mother remarked how my daughter has gotten much more interested in imaginative play lately. I think it was about this time last year when my son, eleven months older, exhibited the same burst in his imagination.
Saturday, February 27, 2016
Lunch or Dinner?
My children seem to have acquired a new confusion of late. For some reason they’re not sure if it’s dinner or lunch when we sit down to eat. Historically, we spent time together as a family both at lunch and dinner. Since the summer camps and the start of the school year they both take a lunch to school and have lunch with their teachers and friends on weekdays.
So recently we’ve served dinner and have started eating and one of the children will ask. “is it lunch or dinner?” We let them know its dinner and ask if they remember having lunch at school—a question the consistently ignore. They don’t seem to be overly bothered by their meal confusion in the slightest.
Are the days going too fast or too slowly for them to cause their confusion? I can’t remember how time flowed when I was a child.
The Big Boy Update: My son played with Legos almost the entire day today. He showed them to Mimi when she spent time with him this afternoon and then showed them to Tristan, our sitter, when he arrived just before dinner. You can tell he’s imagining so many things as he plays with the little characters and pieces. Today he asked if he could go into the craft room to get something. It turns out he wanted to get Darth Vader from the Imperial Cruiser and then add a second light saber to him so he could integrate him with the other characters he already had in play downstairs.
The Tiny Girl Chronicles: I don’t usually post pictures of my children but tonight I’m going to make an exception. This is one of my daughter’s favorite things to do: photocopying her hands on the printer. Usually we get her hands in the picture but today she featured the sleeves of a dress Mimi got her over a year ago. This dress has been through so many paint, marker, dirt and play cycles it’s nearly in tatters, but she loves it still and keeps selecting it to wear when it’s clean. Artistic, no?
So recently we’ve served dinner and have started eating and one of the children will ask. “is it lunch or dinner?” We let them know its dinner and ask if they remember having lunch at school—a question the consistently ignore. They don’t seem to be overly bothered by their meal confusion in the slightest.
Are the days going too fast or too slowly for them to cause their confusion? I can’t remember how time flowed when I was a child.
The Big Boy Update: My son played with Legos almost the entire day today. He showed them to Mimi when she spent time with him this afternoon and then showed them to Tristan, our sitter, when he arrived just before dinner. You can tell he’s imagining so many things as he plays with the little characters and pieces. Today he asked if he could go into the craft room to get something. It turns out he wanted to get Darth Vader from the Imperial Cruiser and then add a second light saber to him so he could integrate him with the other characters he already had in play downstairs.
The Tiny Girl Chronicles: I don’t usually post pictures of my children but tonight I’m going to make an exception. This is one of my daughter’s favorite things to do: photocopying her hands on the printer. Usually we get her hands in the picture but today she featured the sleeves of a dress Mimi got her over a year ago. This dress has been through so many paint, marker, dirt and play cycles it’s nearly in tatters, but she loves it still and keeps selecting it to wear when it’s clean. Artistic, no?
Friday, February 26, 2016
Out or In?
My cousin and I were talking the other day after we’d been to the fitness room. As we stood in the kitchen talking we realized we had something in common: we’d both rather go out for dinner than eat in. I find going out to dinner so easy: you drive somewhere, place an order, food arrives at your table and then someone else cleans it all up. There are no dishes or pots and pans to wash and the leftovers are minimal if you order the right amount of food.
My husband, on the other hand, prefers to eat in. Eating in, and more to the point, cooking, eating in, cleaning up and storing leftovers is what he prefers. In part, it’s because he likes to cook. He likes to cook and even experiment with cooking new and different things. It just seems like so much work to me. The amount of effort involved in doing all the things associated with getting ingredients at the store, making a recipe, serving it, cleaning up the dishes and cookware and putting the kitchen back to rights is far more effort mentally than driving to some friendly restaurant, or so it seems to me.
Don’t get me wrong, I like my husband’s cooking, it’s just sometimes I want to go out. And sometimes he just doesn’t want to go out. I suppose it’s a good balance: we eat out and in in equal measure.
The Big Boy Update: My son has very little interest in drawing. He’ll doodle zombies on thank you cards, but he doesn’t show much interest in translating something three-dimensional into a two-dimensional representation on paper. He is more interested in three-dimensional things like blocks, Legos or any other building tool.
The Tiny Girl Chronicles: My daughter has been doing a lot of drawing lately. She has a remarkable memory for what things look like. Or at least we think she does since she can’t see anything clearly from more than two inches away. She can tell you exactly what she’s drawn too, and much of it, while crude, does look like what she was aiming to draw.
My husband, on the other hand, prefers to eat in. Eating in, and more to the point, cooking, eating in, cleaning up and storing leftovers is what he prefers. In part, it’s because he likes to cook. He likes to cook and even experiment with cooking new and different things. It just seems like so much work to me. The amount of effort involved in doing all the things associated with getting ingredients at the store, making a recipe, serving it, cleaning up the dishes and cookware and putting the kitchen back to rights is far more effort mentally than driving to some friendly restaurant, or so it seems to me.
Don’t get me wrong, I like my husband’s cooking, it’s just sometimes I want to go out. And sometimes he just doesn’t want to go out. I suppose it’s a good balance: we eat out and in in equal measure.
The Big Boy Update: My son has very little interest in drawing. He’ll doodle zombies on thank you cards, but he doesn’t show much interest in translating something three-dimensional into a two-dimensional representation on paper. He is more interested in three-dimensional things like blocks, Legos or any other building tool.
The Tiny Girl Chronicles: My daughter has been doing a lot of drawing lately. She has a remarkable memory for what things look like. Or at least we think she does since she can’t see anything clearly from more than two inches away. She can tell you exactly what she’s drawn too, and much of it, while crude, does look like what she was aiming to draw.
Thursday, February 25, 2016
When They Say Those Things
I always think of Art Linkletter’s “Kids Say The Darnedest Things” when I do one of my kids-only posts. Tonight I have several things they’ve said lately that have made me laugh (or cringe), so here goes:
The Big Boy Update(s):
My son was eating pasta last week and he was having a challenging time keeping the spaghetti on his fork. He was pretty hungry and not being able to get the food into his mouth fast enough was making him irritable. He complained loudly, “why does nothing listen to me!”
There have been a lot of Legos around over the past several weeks. My son has his own little table downstairs now, covered in Legos. He had been happily working for a long time on something when he came in and told me he’d built something with his Legos. I asked, “can I see it?” He thought about it for a second and then said, “I’ll go repair it” and then left.
I got a replica of the metal spinning top from the movie Inception the other day. My husband and I were spinning it and were busy marveling at how long it would spin before falling. One of us said, “that is the best top ever” My son looked over at the thing on the counter and said, “no, it’s the best bottom ever.”
Before Tae Kwon Do this evening we put on Star Wars for my son. My mother was in the room with him so she started reading the scrolling words out since he can’t yet read. After a bit my son said, “all of those words are just making me exhausted.”
The Tiny Girl Episodic Chronicles:
<Mental Image Warning> My daughter was on the potty this morning. I asked if she was finished (so I could wipe) and she told me no. This went on for several more queries from me. Finally she said, “mom, I think my butt’s empty.”
On the way to school my daughter decided to read a book to us. She “reads” books by telling us a story, usually something currently on her mind. The title of this book was, “I’m In Charge of My Body” (Guess who had just gotten in trouble and this was the reprisal message?)
And on the not so funny side, last night while I read a story to my son my daughter wasn’t paying attention. Normally I’d ask her to sit on the bed with us and listen, but in this case I read on and watched. She was taking a grey stuffed animal and throwing it up in the air and watching where it landed. She is a terrible thrower, having very little control at all over direction and distance. But she was able to find the grey small animal on the cream carpet every time. I hope this is a good sign.
The Big Boy Update(s):
My son was eating pasta last week and he was having a challenging time keeping the spaghetti on his fork. He was pretty hungry and not being able to get the food into his mouth fast enough was making him irritable. He complained loudly, “why does nothing listen to me!”
There have been a lot of Legos around over the past several weeks. My son has his own little table downstairs now, covered in Legos. He had been happily working for a long time on something when he came in and told me he’d built something with his Legos. I asked, “can I see it?” He thought about it for a second and then said, “I’ll go repair it” and then left.
I got a replica of the metal spinning top from the movie Inception the other day. My husband and I were spinning it and were busy marveling at how long it would spin before falling. One of us said, “that is the best top ever” My son looked over at the thing on the counter and said, “no, it’s the best bottom ever.”
Before Tae Kwon Do this evening we put on Star Wars for my son. My mother was in the room with him so she started reading the scrolling words out since he can’t yet read. After a bit my son said, “all of those words are just making me exhausted.”
The Tiny Girl Episodic Chronicles:
<Mental Image Warning> My daughter was on the potty this morning. I asked if she was finished (so I could wipe) and she told me no. This went on for several more queries from me. Finally she said, “mom, I think my butt’s empty.”
On the way to school my daughter decided to read a book to us. She “reads” books by telling us a story, usually something currently on her mind. The title of this book was, “I’m In Charge of My Body” (Guess who had just gotten in trouble and this was the reprisal message?)
And on the not so funny side, last night while I read a story to my son my daughter wasn’t paying attention. Normally I’d ask her to sit on the bed with us and listen, but in this case I read on and watched. She was taking a grey stuffed animal and throwing it up in the air and watching where it landed. She is a terrible thrower, having very little control at all over direction and distance. But she was able to find the grey small animal on the cream carpet every time. I hope this is a good sign.
Wednesday, February 24, 2016
Messy and Tidy
The Big Boy Messy Update: My son doesn’t care where the food goes, as long as the parts he cars about going into his mouth. He doesn’t like to lean over his plate to eat, preferring to push he plate back from the edge of the table so more food debris can land on the table itself. He leans back while he eats and gets crumbs everywhere. The dog loves him above all others for this reason alone. Only this morning I had a discussion with him about eating the cinnamon toast with the cinnamon side facing up so more got in his stomach and less on the floor.
And let’s talk about napkins. Shirts are not napkins—but my son can’t seem to remember this. Pants are not napkins—only my son seems to insist they are. He has been threatened, reminded, cajoled bribed and punished in the hopes that napkin use might become a habit but we have so far met with failure.
The Tiny Girl Tidy Chronicles: My daughter likes to eat very carefully over her plate. She leans forward and tries to get the food into her mouth. There is a bit of a visual issue going on but since the food is necessarily close to her face in order to be eaten, she is usually able to see it quite well. She can eat spaghetti with a fork and get large amounts easily into her mouth. She is good with ice cream too, losing very little down the sides of her mouth.
But let’s talk about napkins. She has an obsession with them. She has a need to keep her hands clean between bites. If the food is messy or is finger food, she’s even more aware of the need for napkins—and this means needing a lot of napkins. She will go through several cloths or a collection of paper napkins in a meal if you let her.
Fitness Update: I ran with my cousin today in our fitness room. School was let out early due to high winds, thunderstorms and possible tornados. We got some rain, very little wind and some nice sunshine for what was predicted as a terrible, awful day. It was highly localized so there was bad weather, it just wasn’t where I was. At any rate, to be safe from the drizzle and partly cloudy weather my cousin and I ran on the treadmills in the fitness room. It was fun because we could run at different paces and we sped up and slowed down at different times.
And let’s talk about napkins. Shirts are not napkins—but my son can’t seem to remember this. Pants are not napkins—only my son seems to insist they are. He has been threatened, reminded, cajoled bribed and punished in the hopes that napkin use might become a habit but we have so far met with failure.
The Tiny Girl Tidy Chronicles: My daughter likes to eat very carefully over her plate. She leans forward and tries to get the food into her mouth. There is a bit of a visual issue going on but since the food is necessarily close to her face in order to be eaten, she is usually able to see it quite well. She can eat spaghetti with a fork and get large amounts easily into her mouth. She is good with ice cream too, losing very little down the sides of her mouth.
But let’s talk about napkins. She has an obsession with them. She has a need to keep her hands clean between bites. If the food is messy or is finger food, she’s even more aware of the need for napkins—and this means needing a lot of napkins. She will go through several cloths or a collection of paper napkins in a meal if you let her.
Fitness Update: I ran with my cousin today in our fitness room. School was let out early due to high winds, thunderstorms and possible tornados. We got some rain, very little wind and some nice sunshine for what was predicted as a terrible, awful day. It was highly localized so there was bad weather, it just wasn’t where I was. At any rate, to be safe from the drizzle and partly cloudy weather my cousin and I ran on the treadmills in the fitness room. It was fun because we could run at different paces and we sped up and slowed down at different times.
Tuesday, February 23, 2016
The Oreo Experiment
I found a puzzle we’d been given by some friends a few years ago called Oreo Matching’ Middles. They were fairly easy for my children to do so I’d put them away, saving them for kitchen play at some point in the future but when I saw them this afternoon I realized they might be good for my daughter to try to do with her vision. Here’s what they look like:
You find the two matching halves and put the shapes together. Finding the shapes is the first thing a child can do, then figuring out how to rotationally align them is the second thing they master. For my daughter what makes them challenging is the lack of contrast on the non-filling side. I was wondering how she’d do with them because while she seems to have abysmal vision in some aspects, there are other things she seems to do quite well with.
For example, if she lost something on the floor, several months ago she was completely unable to find it unless she happened upon it. Now, she seems to be able to visually see things in some cases, although she also uses her hands only to find things other times. That goes with the “rapidly fluctuating vision” we’ve all noticed though.
With the Oreo puzzle pieces, she would pick up one of the pieces like the brown-side moon and bring it about one-and-a-half inches from her left eye and just below the eye. She’d say, “moon!” and then try and find the matching moon in the white and brown pieces. She was able to do this with great success, even though it was necessarily slow because she couldn’t see anything from a distance and had to bring every single piece to her eye to check.
What was surprising was her ability to see the shapes at all on the brown only sides. What has been noticed by the visually impaired specialists and her play therapist is high contrast is easier for her to see. Perhaps something is getting slightly better in her left eye.
What has not changed (that I can tell) is her ability to see anything as a whole, such as a complete picture. She does best with small items up close or very large things such as people and rooms for navigating around. I’ll take any improvement though over her current vision.
The Big Boy Update: Spider-Man got killed today in our house. My son got an inflatable Spider-Man during the week of the state fair and he’s been around and about the house ever since that week last October. He’s about the height of my son and for some reason (don’t ask me why) there’s a squeaker inside him. I was tidying up their play room today and the dog heard him squeak and got excited about him. I laughed as she tried to attack him (and failed) and then I put him in the bonus room so I could keep cleaning up. Later in the afternoon Whittaker came over and my son and he were busy doing something with swords. After getting kicked out of the room with my daughter and Whittaker’s sister, they decided to attack Spider-Man. I came around the corner to see them body slamming Spider-Man and taking turns seeing who could pummel him the most. Not surprisingly, Spider-Man didn’t make it. My son and Whittaker were rather proud of their victory over “good” I’m pretty sure.
The Tiny Girl Chronicles: My daughter isn’t the most helpful when you ask her how her vision is. Today I asked her if she was able to see things better when she was lying on her back watching the iPad. We have to keep it at a certain distance away from her face (meaning a certain distance close to her face) for her to see things. Typically it’s between one and three inches. Today I thought she might have had me adjust it a little further away. When I asked if she could see better she told me, “yes” but that may have been her telling me what she thinks I want to hear.
Monday, February 22, 2016
When You Don’t Tell
This blindness thing with my daughter is a topic of conversation that can’t really be avoided. That’s okay, i’m not complaining, it’s one of those topics that people want to know about. If someone is aware of what’s happened but they haven’t seen us in a while they want to ask in all hopefulness how things are going. People want to hear good news. If the person hadn’t heard about my daughter’s sudden vision loss they are concerned and interested and want to know the story. In either case, I don’t mind talking about it. But sometimes it’s tiring telling the sad story with the unknown ultimate outcome.
There is a third option I’ve discovered: not mentioning anything at all. I’ve gone to birthday parties with my daughter and not said anything to parents who didn’t know. My daughter needs some extra help sometimes, but different children need different amounts of help. Maybe she comes off as not paying attention or a little bit slower than other children her age, but there is so much variability in children’s development you can get away with saying nothing almost all the time.
The last birthday party was at an indoor playground. My daughter didn’t know who she was playing with a lot of the time unless we told her or she heard their voice. I intentionally said nothing to any of the parents and no one came up to me and asked if she was okay.
To me though, it’s shockingly obvious. Her eyes are blown wide open with fully dilated pupils (or in her case, permanently scarred pupils). She stares blankly and doesn’t visually track like a sighted person does and her eyes don’t always work the same when she’s trying to see something from an angle that she’s still able to gain some information from. But people don’t remember what she used to be like. Sometimes, I’m afraid I’m going to forget what she used to look like as a normally sighted child.
Hopefully next month’s surgery will give her some vision back and we’ll be on a path to more sight and more normally function eyes for her. For now, I just let her be her happy self and remember to be happy that she has enough sight that people don’t realize what her visual capability really is.
The Big Boy Update: I got in trouble with my son yesterday morning. He was looking at the door to our deck, which isn’t accessible from the ground. He told me, “mom, if someone had a grappling hook they could have come up here and taken our stuff, you left the door unlocked.” I told him he was right and we’d better be more careful in the future.
The Tiny Girl Chronicles: We took our children to Dave and Busters last week. It’s got a lot of electronic games and lots of huge lights and colors all in a dark environment. As we were walking around my daughter told me, “I love the colors. I love all of the colors in the world.”
Sunday, February 21, 2016
Triathlon
Did I mention I’d signed up for a triathlon? It’s an olympic distance one so it’s not as long or grueling as a half Iron Man, but it’s longer than anything I’ve done before. I estimate I’ll be swimming, biking and running for close to four hours in May.
Today my neighbor and I ran in the park and afterwards her children and she came over for pizza and crafts while her husband biked with a friend. He stopped in afterwards for some of the then cold pizza and I got a lot of good information on how to prepare and train for the triathlon.
He’s in the same one I’m in May, but he’s also doing a full Iron Man in October, which will likely be over twelve hours of straight exercising. He’s been working with a trainer to prepare and he’s also done triathlons before. I feel a bit less worried after talking to him, but I realize I need to do some things to prepare soon.
The Big Boy Update: I asked Greyson what he’d like to say for his blog post update tonight. I told him some of his family and friends read what I write here. He told me to write, “you’re cute. I love you. Ummm…” Me, “what?” My son, “I said, ‘ummmm.’” Me, “did you want me to write that part?” My son, “yes. That’s all.”
The Tiny Girl Chronicles: I was on the phone with a friend about a committee meeting we’re having in the morning. My daughter came downstairs and whispered to me, “mommy, if I go upstairs and go to bed, when you’re off the phone will you come give me a kiss and a hug goodnight?” I promised her I would.
Fitness Update: Sixteen miles today in what felt more like spring weather than February’s typical cold temperatures.
Today my neighbor and I ran in the park and afterwards her children and she came over for pizza and crafts while her husband biked with a friend. He stopped in afterwards for some of the then cold pizza and I got a lot of good information on how to prepare and train for the triathlon.
He’s in the same one I’m in May, but he’s also doing a full Iron Man in October, which will likely be over twelve hours of straight exercising. He’s been working with a trainer to prepare and he’s also done triathlons before. I feel a bit less worried after talking to him, but I realize I need to do some things to prepare soon.
The Big Boy Update: I asked Greyson what he’d like to say for his blog post update tonight. I told him some of his family and friends read what I write here. He told me to write, “you’re cute. I love you. Ummm…” Me, “what?” My son, “I said, ‘ummmm.’” Me, “did you want me to write that part?” My son, “yes. That’s all.”
The Tiny Girl Chronicles: I was on the phone with a friend about a committee meeting we’re having in the morning. My daughter came downstairs and whispered to me, “mommy, if I go upstairs and go to bed, when you’re off the phone will you come give me a kiss and a hug goodnight?” I promised her I would.
Fitness Update: Sixteen miles today in what felt more like spring weather than February’s typical cold temperatures.
Saturday, February 20, 2016
Would You Be a Reference?
Recently my son’s eyes were checked under anesthesia to make sure he didn’t have any of the nonsense my daughter has going on that’s caused her to lose over ninety percent of her vision. He’s fine, which is good news, but we all agreed it was something that needed to be confirmed. We had a nice time at the eye center that day, even though we had a long time to wait and got pushed off even later because of other cases.
My son was completely fine with the whole day, mostly because he got to play on his iPad. He wasn’t afraid of anything, although he didn’t like the three rounds of stinging drops much. He walked back into the operating room and without too much fuss breathed in the gas and was asleep.
During our hours there several of our doctors stopped in. They each took time to speak to my son and have a conversation with me. We talked about how my daughter’s vision was doing and what we had learned from Dr. Trese in Detroit.
Now folks, I know doctors are busy. They’re in there going from patient to patient in the operating rooms as the nurses, anesthesiologists, staff are ready. That doesn’t leave a lot of time to chit chat with parents. But our doctors took that time. They didn’t seem rushed and made sure all my questions were answered, even though we were’t there for my daughter that day.
As my daughter’s pediatric retina surgeon was about to leave, he asked me if my husband and I would be willing to be contacted by other families. They see many cases and some of them are challenging to diagnose, some never even have a diagnosis. And that’s hard—not knowing why your child is going blind and if it can be stopped or reversed.
My daughter’s doctor said some very kind things about how we’d been handling the situation and how our experience might be a comfort and help to other families who are going through similar things. Guys, I was flattered. I mean really flattered. I told him we would be more than happy to be a reference family for other patients and to feel free to share our contact information.
We have tried to be objective, even though there is so much emotional about the situation. We have tried to be rational, even when all we want to do is be irrational and blameful (is ‘blameful’ a word?) And we have tried to hold it together through everything so that our daughter keeps being the happy and carefree person she’s always been.
I suppose we’ve been successful because my daughter continues to be one of the most joyful people I’ve ever known.
The Big Boy Update: My son was bonkers mad crazy energetic at dinner tonight. He was kicking the car seat on the way home so I challenged him to a race around the house. Five laps around the outside of the house. Who would be the winner? We started at the front door after we’d turned on the flood lights and my daughter and husband counted the laps and cheered us on. My son beat me by about four paces. He was huffing and puffing at the end but he was happy because he loves to win.
The Tiny Girl Chronicles: One of my daughter’s favorite songs right now is Proxy by Martin Garrix. It’s a club dance song with only two lines in the whole song, both being, “put your hands up!” My daughter was in the bathroom the other day when the song came on. She gaily sang out the hands up line, threw her hands in the air and started jumping around like she was in a club. I swear, I didn’t teach her that…I don’t think.
Fitness Update: Seven miles running this afternoon unexpectedly. I got a sitter with three minutes notice, changed my shoes and put on some running gear and ran out the door to chase down my neighbor. I ran past Uncle Jonathan on the way out.
My son was completely fine with the whole day, mostly because he got to play on his iPad. He wasn’t afraid of anything, although he didn’t like the three rounds of stinging drops much. He walked back into the operating room and without too much fuss breathed in the gas and was asleep.
During our hours there several of our doctors stopped in. They each took time to speak to my son and have a conversation with me. We talked about how my daughter’s vision was doing and what we had learned from Dr. Trese in Detroit.
Now folks, I know doctors are busy. They’re in there going from patient to patient in the operating rooms as the nurses, anesthesiologists, staff are ready. That doesn’t leave a lot of time to chit chat with parents. But our doctors took that time. They didn’t seem rushed and made sure all my questions were answered, even though we were’t there for my daughter that day.
As my daughter’s pediatric retina surgeon was about to leave, he asked me if my husband and I would be willing to be contacted by other families. They see many cases and some of them are challenging to diagnose, some never even have a diagnosis. And that’s hard—not knowing why your child is going blind and if it can be stopped or reversed.
My daughter’s doctor said some very kind things about how we’d been handling the situation and how our experience might be a comfort and help to other families who are going through similar things. Guys, I was flattered. I mean really flattered. I told him we would be more than happy to be a reference family for other patients and to feel free to share our contact information.
We have tried to be objective, even though there is so much emotional about the situation. We have tried to be rational, even when all we want to do is be irrational and blameful (is ‘blameful’ a word?) And we have tried to hold it together through everything so that our daughter keeps being the happy and carefree person she’s always been.
I suppose we’ve been successful because my daughter continues to be one of the most joyful people I’ve ever known.
The Big Boy Update: My son was bonkers mad crazy energetic at dinner tonight. He was kicking the car seat on the way home so I challenged him to a race around the house. Five laps around the outside of the house. Who would be the winner? We started at the front door after we’d turned on the flood lights and my daughter and husband counted the laps and cheered us on. My son beat me by about four paces. He was huffing and puffing at the end but he was happy because he loves to win.
The Tiny Girl Chronicles: One of my daughter’s favorite songs right now is Proxy by Martin Garrix. It’s a club dance song with only two lines in the whole song, both being, “put your hands up!” My daughter was in the bathroom the other day when the song came on. She gaily sang out the hands up line, threw her hands in the air and started jumping around like she was in a club. I swear, I didn’t teach her that…I don’t think.
Fitness Update: Seven miles running this afternoon unexpectedly. I got a sitter with three minutes notice, changed my shoes and put on some running gear and ran out the door to chase down my neighbor. I ran past Uncle Jonathan on the way out.
Friday, February 19, 2016
Grieving the Loss of Normalcy
Yesterday I had a friend text me about a gymnastics class for blind children she had heard about. She and I talked via text for a while about a lot of things. She was one of the people I turned to when we began the Individualized Education Plan for my daughter with the public school system. She has a son with Downs Syndrome and has given us good advice as we went through the process.
She asked me last night how I was doing. I’ve been asked this a lot. People know we’ve been going through a life-changing situation with my daughter. We all worry about her and the majority of the conversations we have are about her. But people also have compassion and understand how terribly painful it must be for parents to see their child suffer and to lose hope for a vision of a normal future for their child.
My friend said in our text conversation last night, “grieving the loss of normalcy was very hard for me. I still get very down about it.” That one comment has run through my mind many times since our conversation last night. It’s a succinct way to express what goes on in your head as a parent.
My daughter’s path was one of normalcy. Since my daughter’s vision loss, I think about all the things in both her and our lives that necessarily have to be different. I don’t want to have genius children that grow up to be the presidents (one following the other in office, obviously.) All I want is to have two children who grow up in a boring, normal way like everyone else.
The change in my daughter’s vision robbed us of that normalcy. We are now special. Special was something I wanted to be when I was younger—now all I want is to be normal.
The Big Boy Update: We have an Amazon Echo in our kitchen. You can say out loud requests starting with the word, “Alexa” and the Echo will respond. Alexa sets timers for us, plays music, answers questions via Internet search results and adds items to our shopping list among other things. Alexa is popular in our house. This morning my son said, “It would be good if we could get another Alexa that could make us food. I want her to make me my favorite snack.”
The Tiny Girl Chronicles: My daughter’s eyes have started tracking separately. It’s not all the time, it’s only when she’s looking rolling her left eye up because she seems to be able to see better from that angle on that eye. Hopefully after her surgery next month when her right eye’s lens capsule is opened up and we get a corrective lens on her, we’ll be able to see her use both eyes together consistently.
Fitness Update: I ran close to five miles with my cousin today. I went to her house and we ran in the greenway paths that surround her house. It was a lovely run. We’re planning on running together again next week.
She asked me last night how I was doing. I’ve been asked this a lot. People know we’ve been going through a life-changing situation with my daughter. We all worry about her and the majority of the conversations we have are about her. But people also have compassion and understand how terribly painful it must be for parents to see their child suffer and to lose hope for a vision of a normal future for their child.
My friend said in our text conversation last night, “grieving the loss of normalcy was very hard for me. I still get very down about it.” That one comment has run through my mind many times since our conversation last night. It’s a succinct way to express what goes on in your head as a parent.
My daughter’s path was one of normalcy. Since my daughter’s vision loss, I think about all the things in both her and our lives that necessarily have to be different. I don’t want to have genius children that grow up to be the presidents (one following the other in office, obviously.) All I want is to have two children who grow up in a boring, normal way like everyone else.
The change in my daughter’s vision robbed us of that normalcy. We are now special. Special was something I wanted to be when I was younger—now all I want is to be normal.
The Big Boy Update: We have an Amazon Echo in our kitchen. You can say out loud requests starting with the word, “Alexa” and the Echo will respond. Alexa sets timers for us, plays music, answers questions via Internet search results and adds items to our shopping list among other things. Alexa is popular in our house. This morning my son said, “It would be good if we could get another Alexa that could make us food. I want her to make me my favorite snack.”
The Tiny Girl Chronicles: My daughter’s eyes have started tracking separately. It’s not all the time, it’s only when she’s looking rolling her left eye up because she seems to be able to see better from that angle on that eye. Hopefully after her surgery next month when her right eye’s lens capsule is opened up and we get a corrective lens on her, we’ll be able to see her use both eyes together consistently.
Fitness Update: I ran close to five miles with my cousin today. I went to her house and we ran in the greenway paths that surround her house. It was a lovely run. We’re planning on running together again next week.
Thursday, February 18, 2016
The Toys Under The Sink
The Tiny Girl Who Has Been To Too Many Doctors Chronicles:
My daughter has been to a lot of doctors. She’s pretty understanding about the whole thing and doesn’t seem to get too upset about doctors visits. She does have her things she dislikes though. She isn’t fond of getting an IV (who is) and she doesn’t like “going to sleep” (general anesthesia).
We made an appointment for her to see her general practitioner because she has some bumps on her bottom. We told her she was going to go with dad early in the morning to see the doctor about her bumps and then they’d go to school afterwards. She wasn’t worried about the bumps, her only question was, “do I have to go to sleep?”
My husband told her she wouldn’t have to go to sleep. He thought about how to explain where we’d be going. Her doctor has been seeing her since she was three-days old and she is our favorite doctor. We always like seeing her. But that description didn’t make a connection with my daughter though what with all the doctors she’s seen in so many different offices over the past six months. So, my husband tried another tactic.
He told her, “do you remember the doctor’s office where the toys are under the sink? She brightened and nodded. He said, “that’s where we’re going tomorrow.” She knew exactly where we were going based on that description and went back to her work.
I don’t know why they keep toys under the sinks in their patient rooms, but every single child that goes in there knows it. As soon as we enter a room my children go and check under the sink.
The Big Boy Update: My son had an app on his iPad that was crashing tonight. He told his father and me, “maybe there’s something wrong with the Internet?”
My daughter has been to a lot of doctors. She’s pretty understanding about the whole thing and doesn’t seem to get too upset about doctors visits. She does have her things she dislikes though. She isn’t fond of getting an IV (who is) and she doesn’t like “going to sleep” (general anesthesia).
We made an appointment for her to see her general practitioner because she has some bumps on her bottom. We told her she was going to go with dad early in the morning to see the doctor about her bumps and then they’d go to school afterwards. She wasn’t worried about the bumps, her only question was, “do I have to go to sleep?”
My husband told her she wouldn’t have to go to sleep. He thought about how to explain where we’d be going. Her doctor has been seeing her since she was three-days old and she is our favorite doctor. We always like seeing her. But that description didn’t make a connection with my daughter though what with all the doctors she’s seen in so many different offices over the past six months. So, my husband tried another tactic.
He told her, “do you remember the doctor’s office where the toys are under the sink? She brightened and nodded. He said, “that’s where we’re going tomorrow.” She knew exactly where we were going based on that description and went back to her work.
I don’t know why they keep toys under the sinks in their patient rooms, but every single child that goes in there knows it. As soon as we enter a room my children go and check under the sink.
The Big Boy Update: My son had an app on his iPad that was crashing tonight. He told his father and me, “maybe there’s something wrong with the Internet?”
Wednesday, February 17, 2016
Is That an iPad?
I was looking for some paper for the printer in my drawer last night when I noticed my old iPad. Although at this point that’s not specific enough, I saw my first iPad. I remember when the iPad was first announced and how we discussed our thoughts on the name of the device, most of which were uncomplimentary. Was it really going to be “magical and revolutionary”? And more to the point, did I need (read “want”) one?
The initial release was for the wifi version only iPad. My nephew got one and was therefore the earliest adopter of iPad technology in our family. I decided I wanted to get one, but I was going to wait until the 3G version came out so I could use it anywhere.
A few months later I waited in line on release day and walked out with what was a that time the slickest technology I’d ever held in my hands. It became suddenly useful everywhere and was so indispensable that to this day I will only carry a purse that facilitates easy storage and access to my iPad.
Last night when I saw my old, discharged, larger and less sleek iPad 1 in the drawer the interesting experiences I had carrying it around. I would pull it out to look up things, navigate places, do iPad-based tasks and would invariably be asked, “is that an iPad?” People were entranced by it. I had a demo of things I would show people and they were always impressed. Heck, I was impressed too and I was the one doing the demo.
Now it seems tablet technology is omnipresent in our lives, on television, in the schools, as interactive devices for adults and children alike. I think I’m going to keep my original iPad and see if I can charge it up again some day in future years and compare it to the latest technology then.
The Big Boy Update: My daughter told me something the other day while she was sitting on the potty and I was kneeling in front of her. Tonight my son had his turn. I told him, “you’re very handsome.” He said back, “you’re cute.” I said, “I am?” He replied, “your body’s cute, not your face.”
The Tiny Girl Chronicles: My daughter has these large bumps on her bottom. She had a rash thing that went on for some time which we had checked by her general practitioner as well as a dermatologist. That largely resolved, but there have been some strange bumps that looks sort of like deep seated acne that don’t come to the surface. She has one that’s gotten a bit too large for comfort (ours as concerned parents and hers as a child who finds it uncomfortable) so we took her to her general practitioner today. Our favorite doctor said, “I’m going to send you to a dermatologist again because this isn’t anything immediately obvious. She thought they might be cysts but it would make sense to have a specialist look at them. Tomorrow she’s going to have another doctor’s appointment (because this child can not get enough of doctors, am I right?) and hopefully we’ll know more.
The initial release was for the wifi version only iPad. My nephew got one and was therefore the earliest adopter of iPad technology in our family. I decided I wanted to get one, but I was going to wait until the 3G version came out so I could use it anywhere.
A few months later I waited in line on release day and walked out with what was a that time the slickest technology I’d ever held in my hands. It became suddenly useful everywhere and was so indispensable that to this day I will only carry a purse that facilitates easy storage and access to my iPad.
Last night when I saw my old, discharged, larger and less sleek iPad 1 in the drawer the interesting experiences I had carrying it around. I would pull it out to look up things, navigate places, do iPad-based tasks and would invariably be asked, “is that an iPad?” People were entranced by it. I had a demo of things I would show people and they were always impressed. Heck, I was impressed too and I was the one doing the demo.
Now it seems tablet technology is omnipresent in our lives, on television, in the schools, as interactive devices for adults and children alike. I think I’m going to keep my original iPad and see if I can charge it up again some day in future years and compare it to the latest technology then.
The Big Boy Update: My daughter told me something the other day while she was sitting on the potty and I was kneeling in front of her. Tonight my son had his turn. I told him, “you’re very handsome.” He said back, “you’re cute.” I said, “I am?” He replied, “your body’s cute, not your face.”
The Tiny Girl Chronicles: My daughter has these large bumps on her bottom. She had a rash thing that went on for some time which we had checked by her general practitioner as well as a dermatologist. That largely resolved, but there have been some strange bumps that looks sort of like deep seated acne that don’t come to the surface. She has one that’s gotten a bit too large for comfort (ours as concerned parents and hers as a child who finds it uncomfortable) so we took her to her general practitioner today. Our favorite doctor said, “I’m going to send you to a dermatologist again because this isn’t anything immediately obvious. She thought they might be cysts but it would make sense to have a specialist look at them. Tomorrow she’s going to have another doctor’s appointment (because this child can not get enough of doctors, am I right?) and hopefully we’ll know more.
Tuesday, February 16, 2016
Jack Sprat and His Icing Eating Sister
Tonight’s post is inspired by a comment my son made this morning at breakfast, which I’ll tell at the end. As a preamble, we have two children who love birthday cake in this family, three if you could me. They like birthday parties but telling them there’s a party may not always get their shoes and jackets on and out the door. Telling them there’s a birthday party and there will be cake, is sure to do the trick though.
My children eat their birthday cake in two entirely different ways, even though they both seem to like the birthday cake equally. My daughter eats all the icing off from the top, sides and middle if she can get in there and then leaves the cake part untouched. My son, on the other hand, tries to get as much of the cake eaten while leaving the icing in place. If it’s a slice of cake it looks like a capital letter ‘E’ when he’s done or in the case of a cupcake, the entire bottom is gone.
Neither child has once complained about any kind of cake whatsoever that I remember. That includes type, filling, icing, color, shape, etc. But they each prefer to eat the parts the like the best and leave the rest.
The Big Boy Update: This morning for no reason I could discern this morning my son told me, “do you know what my favorite kind of cake is? Muffins, because I don’t like icing.”
The Tiny Girl Chronicles: My daughter was working with some coins the other day. I was going to show her something but she was focused on her work, pausing only to tell me, “excuse me, I’m doing this money work.”
My children eat their birthday cake in two entirely different ways, even though they both seem to like the birthday cake equally. My daughter eats all the icing off from the top, sides and middle if she can get in there and then leaves the cake part untouched. My son, on the other hand, tries to get as much of the cake eaten while leaving the icing in place. If it’s a slice of cake it looks like a capital letter ‘E’ when he’s done or in the case of a cupcake, the entire bottom is gone.
Neither child has once complained about any kind of cake whatsoever that I remember. That includes type, filling, icing, color, shape, etc. But they each prefer to eat the parts the like the best and leave the rest.
The Big Boy Update: This morning for no reason I could discern this morning my son told me, “do you know what my favorite kind of cake is? Muffins, because I don’t like icing.”
The Tiny Girl Chronicles: My daughter was working with some coins the other day. I was going to show her something but she was focused on her work, pausing only to tell me, “excuse me, I’m doing this money work.”
Monday, February 15, 2016
When Hair Care Products Run
I stopped in to see my running buddy at her office over lunch last week. Her office is literally “down the road” from the children’s new school. And by literally, I mean one block. Although perhaps it would be more correct to say our school is down the road from her office, since her building pre-dated our school by many years. Either way, I was stopping by her office hoping to say a quick ‘hello’.
I text messaged her telling her I was just outside her waiting room. This is the thing, she’s an obstetrician and those patients with the small human beings developing in their mother’s womb get priority over me, her neighbor, coming in to give her a, “gosh, I haven’t seen you in far too long”, hug. Hence the waiting outside.
She texted me back, saying she was just driving up from lunch and to wait, she’d be up in a minute. Sure enough, she came out of the elevator, looking elegant as always in her heels and dress. I realized she’d just had her hair done because there was some dye on her forehead. I would have never known about this, but she and I have been running together a long time and I’ve seen some interesting things happen with hair dye.
She is Korean, so her hair is black. When she has it colored, the next day/wash cycle some of the dye comes off. Supposing she had her hair colored on her Friday afternoon off and then she and I ran at 5:30AM the next morning? I can tell you what happens: she sweats charcoal black. The first time I saw it happening I thought something was dreadfully wrong.
So here is my friend in her lovely dress and heels, about to see patients and she’s got hair dye on her forehead. I had to let her know so she could wipe it off before going into her office. She smiled and said to me, “sweetie, it’s Ash Wednesday, I just came from church.”
Did I mention I had no Catholic friends growing up? I felt so ignorant. But I wasn’t done. I further asked her if it was supposed to be sort of smeary and blobbed, because it looked like the priest didn’t have an eye for accuracy or neatness. She told me that yes, it was supposed to look like that. Well in that case, I told her, you look great.
How embarrassing.
The Big Boy Update: My son asked my husband the other morning, “dad, could I give up breakfast for iPad?”
The Tiny Girl Chronicles: My daughter was sitting on the potty tonight and I was telling her she was the prettiest girl in the whole neighborhood. She smiled so I told her she was the prettiest little girl with blonde hair in the entire city. She looked thoughtful and then said, “you are the prettiest momma with a vagina.”
I text messaged her telling her I was just outside her waiting room. This is the thing, she’s an obstetrician and those patients with the small human beings developing in their mother’s womb get priority over me, her neighbor, coming in to give her a, “gosh, I haven’t seen you in far too long”, hug. Hence the waiting outside.
She texted me back, saying she was just driving up from lunch and to wait, she’d be up in a minute. Sure enough, she came out of the elevator, looking elegant as always in her heels and dress. I realized she’d just had her hair done because there was some dye on her forehead. I would have never known about this, but she and I have been running together a long time and I’ve seen some interesting things happen with hair dye.
She is Korean, so her hair is black. When she has it colored, the next day/wash cycle some of the dye comes off. Supposing she had her hair colored on her Friday afternoon off and then she and I ran at 5:30AM the next morning? I can tell you what happens: she sweats charcoal black. The first time I saw it happening I thought something was dreadfully wrong.
So here is my friend in her lovely dress and heels, about to see patients and she’s got hair dye on her forehead. I had to let her know so she could wipe it off before going into her office. She smiled and said to me, “sweetie, it’s Ash Wednesday, I just came from church.”
Did I mention I had no Catholic friends growing up? I felt so ignorant. But I wasn’t done. I further asked her if it was supposed to be sort of smeary and blobbed, because it looked like the priest didn’t have an eye for accuracy or neatness. She told me that yes, it was supposed to look like that. Well in that case, I told her, you look great.
How embarrassing.
The Big Boy Update: My son asked my husband the other morning, “dad, could I give up breakfast for iPad?”
The Tiny Girl Chronicles: My daughter was sitting on the potty tonight and I was telling her she was the prettiest girl in the whole neighborhood. She smiled so I told her she was the prettiest little girl with blonde hair in the entire city. She looked thoughtful and then said, “you are the prettiest momma with a vagina.”
Sunday, February 14, 2016
Name That Dish
My husband likes to cook. Most of the time he’s making something he’s made many times before. Sometimes he’s making a dish he’s looked up and is following a recipe. And then some of the time he’s just winging something, using some guidance from various recipes he’s read and then making decisions on ingredients, seasonings and cooking steps once he gets started. Tonight he made one of those dishes.
Some of these dishes are good. I can tell you this though, my husband thinks they’re all good. And to him I suppose they should be—he made the dishes, putting into them all the things he likes. Of course he likes them. I’m not as easy a sell. Some of them I like, some of them are fine but I wouldn’t request a second time and every now and then there’s one I don’t care to have again.
Tonight my husband made a dish that he ran into trouble with. It wasn’t a flavoring trouble, it was an ingredients-type of trouble. It was the kind of trouble you can only correct by adding more of one thing which causes you to need to add more of another thing. In the end we had a lot of dinner. The good news was everyone liked and wants to have it again. This is a good thing, because with all the leftovers we have, we’re going to be seeing it again very soon.
When my husband makes a dish we want to have again, usually we name it. Well, commonly I name it because it’s hard to refer to a recipe by ingredients alone. There is one of our favorites, “Boring Chicken” and then there’s “Chicken Ginger Pow” which is great if you like super hot, but would go over poorly with the children.
Tonight, I asked the children if they wanted to help name dad’s dish. We explained how commonly a dish name has some of the ingredients in it. We told the children what items were in the recipe (chicken, mushrooms, rice, edamame beans). My daughter thought about it and yelled out, “banana poppers!”
We could never get them to come up with a name other than something silly or outrageous. We may have to stick with Banana Poppers if we don’t come up with an alternative.
The Big Boy Update: My husband got a toy light saber. He’s working on a project with my son which involves him videoing my son wielding the light saber around the basement. As you can well imagine, my son is only happy to oblige.
The Tiny Girl Chronicles: My daughter asked me the other morning in the car, “do you know what my favorite number is?” I knew her favorite color (green) but this was the first I’d heard about her having a favorite number. I said I didn’t know. She replied, “ten-thousand”.
Fitness Update: It seems like I’m only exercising once each week of late. It must be winter. Today I went to the fitness room for close to two-and-a-half hours. I broke my favorite multi-use machine on which I do a lot of upper body exercises. I was about to do the first exercise when I pulled down and heard a large snap, followed by the interconnected cabling in the machine all going slack. The cable had snapped at one point. I sent an email to the property management company, hopefully it will be back up next week. In the absence of the machine, I did a lot of cardio.
Some of these dishes are good. I can tell you this though, my husband thinks they’re all good. And to him I suppose they should be—he made the dishes, putting into them all the things he likes. Of course he likes them. I’m not as easy a sell. Some of them I like, some of them are fine but I wouldn’t request a second time and every now and then there’s one I don’t care to have again.
Tonight my husband made a dish that he ran into trouble with. It wasn’t a flavoring trouble, it was an ingredients-type of trouble. It was the kind of trouble you can only correct by adding more of one thing which causes you to need to add more of another thing. In the end we had a lot of dinner. The good news was everyone liked and wants to have it again. This is a good thing, because with all the leftovers we have, we’re going to be seeing it again very soon.
When my husband makes a dish we want to have again, usually we name it. Well, commonly I name it because it’s hard to refer to a recipe by ingredients alone. There is one of our favorites, “Boring Chicken” and then there’s “Chicken Ginger Pow” which is great if you like super hot, but would go over poorly with the children.
Tonight, I asked the children if they wanted to help name dad’s dish. We explained how commonly a dish name has some of the ingredients in it. We told the children what items were in the recipe (chicken, mushrooms, rice, edamame beans). My daughter thought about it and yelled out, “banana poppers!”
We could never get them to come up with a name other than something silly or outrageous. We may have to stick with Banana Poppers if we don’t come up with an alternative.
The Big Boy Update: My husband got a toy light saber. He’s working on a project with my son which involves him videoing my son wielding the light saber around the basement. As you can well imagine, my son is only happy to oblige.
The Tiny Girl Chronicles: My daughter asked me the other morning in the car, “do you know what my favorite number is?” I knew her favorite color (green) but this was the first I’d heard about her having a favorite number. I said I didn’t know. She replied, “ten-thousand”.
Fitness Update: It seems like I’m only exercising once each week of late. It must be winter. Today I went to the fitness room for close to two-and-a-half hours. I broke my favorite multi-use machine on which I do a lot of upper body exercises. I was about to do the first exercise when I pulled down and heard a large snap, followed by the interconnected cabling in the machine all going slack. The cable had snapped at one point. I sent an email to the property management company, hopefully it will be back up next week. In the absence of the machine, I did a lot of cardio.
Saturday, February 13, 2016
Largely Ignored
I was out shopping today and I marveled at all the Valentines merchandising happening. The grocery store flower section had overflowed into the produce area. There were food and beverage suggestions all over the store to help with romantic evening plans. I got my milk and cheese and headed on to the next store.
I had to pick up some things for the children’s school so I did several more stops. There was emphasis on Valentine’s day everywhere, including Lowes, where I went to get some nail filler.
We don’t celebrate Valentine’s day at our house. We don’t not celebrate it, we just don’t make a big thing of it. There is no candy and no flowers are bought or delivered. We have too many stuffed animals and I don’t need any jewelry.
We do tell the children about the holiday and they get excited about the Valentine’s day card exchange at school. Yesterday the exchange happened but they weren’t allowed to look at their cards until they got home. Bags are stapled shut with cards inside by the teachers in case of curious hands. My children liked going through each of their bags last night.
Tomorrow we’ll remember to tell each member of our family how much we love them. Ooo…and maybe I’ll get some candy on sale after tomorrow!
The Big Boy Update: My husband and son were working on building a Lego model this morning when my son matter-of-factly said, “why does this one use two fucking swords?” My husband said, “what did you say?” My son replied in a questioning tone, “fucking?” My husband explained how that word was a grown up word and he would be able to use it when he was older, but not now. My son replied, “oh, I didn’t know; I’ve used it a lot.”
The Tiny Girl Chronicles: My daughter used a brailler machine at school on Friday. Her visual impairment teacher helped her type her name on a piece of paper. Then she got to bang away on the machine and make all sorts of letters. Well, one letter mostly; whatever letter is six dots that look like a six-dot domino. I was substituting in my daughter’s after school class on Friday. I watched as she pulled out the paper and felt the bumps on it during the afternoon. I think she enjoyed her work.
I had to pick up some things for the children’s school so I did several more stops. There was emphasis on Valentine’s day everywhere, including Lowes, where I went to get some nail filler.
We don’t celebrate Valentine’s day at our house. We don’t not celebrate it, we just don’t make a big thing of it. There is no candy and no flowers are bought or delivered. We have too many stuffed animals and I don’t need any jewelry.
We do tell the children about the holiday and they get excited about the Valentine’s day card exchange at school. Yesterday the exchange happened but they weren’t allowed to look at their cards until they got home. Bags are stapled shut with cards inside by the teachers in case of curious hands. My children liked going through each of their bags last night.
Tomorrow we’ll remember to tell each member of our family how much we love them. Ooo…and maybe I’ll get some candy on sale after tomorrow!
The Big Boy Update: My husband and son were working on building a Lego model this morning when my son matter-of-factly said, “why does this one use two fucking swords?” My husband said, “what did you say?” My son replied in a questioning tone, “fucking?” My husband explained how that word was a grown up word and he would be able to use it when he was older, but not now. My son replied, “oh, I didn’t know; I’ve used it a lot.”
The Tiny Girl Chronicles: My daughter used a brailler machine at school on Friday. Her visual impairment teacher helped her type her name on a piece of paper. Then she got to bang away on the machine and make all sorts of letters. Well, one letter mostly; whatever letter is six dots that look like a six-dot domino. I was substituting in my daughter’s after school class on Friday. I watched as she pulled out the paper and felt the bumps on it during the afternoon. I think she enjoyed her work.
Friday, February 12, 2016
Legos
DMy son and husband love Legos. My husband sometimes needs some Lego therapy and has to go buy a model. My son can play with a completed model for days and days, breaking bits of and the putting them back on in slightly different ways as he tries to “fix” it.
For my son’s birthday and Christmas he received multiple lego sets. He’s been working through them slowly, as a single model can keep him entertained for quite some time. Yesterday we had a scheduling conflict so my mother stepped in to help. Before the two of them went off to his Tae Kwon Do class he asked Mimi if she would help him with a Lego model.
He took her up to the room with a child lock on the door and told her it would be all right to go in. He selected one of the models and was ready to work on it. My mother told him she didn’t know how to put together a Lego model. My son told her, “it’s simple, Mimi, you just follow the instructions.”
He say at the table and did just that. He was making good progress on the model when it was time to go to Tae Kwon Do. Maybe next time Mimi comes to visit they’ll finish their model.
The Big Boy Update: When my mother left yesterday my son leaned out the door and told her, “I love you, Mimi.”
The Tiny Girl Chronicles: At dinner my daughter was singing a song we couldn’t identify. It was all about a band of angels. Well, it was one line and that line was something like “la de da la la la, band of angles.” She didn’t remember the rest of the son.
For my son’s birthday and Christmas he received multiple lego sets. He’s been working through them slowly, as a single model can keep him entertained for quite some time. Yesterday we had a scheduling conflict so my mother stepped in to help. Before the two of them went off to his Tae Kwon Do class he asked Mimi if she would help him with a Lego model.
He took her up to the room with a child lock on the door and told her it would be all right to go in. He selected one of the models and was ready to work on it. My mother told him she didn’t know how to put together a Lego model. My son told her, “it’s simple, Mimi, you just follow the instructions.”
He say at the table and did just that. He was making good progress on the model when it was time to go to Tae Kwon Do. Maybe next time Mimi comes to visit they’ll finish their model.
The Big Boy Update: When my mother left yesterday my son leaned out the door and told her, “I love you, Mimi.”
The Tiny Girl Chronicles: At dinner my daughter was singing a song we couldn’t identify. It was all about a band of angels. Well, it was one line and that line was something like “la de da la la la, band of angles.” She didn’t remember the rest of the son.
Thursday, February 11, 2016
Wobbly
I substituted at school today. There has been a rash of illness and the school is down more teachers than they can accommodate. Some teachers were ill themselves, others had children who were sick. I worked out a plan with my husband and mother to pick up my two children so I could substitute until the end of the day today.
I’m glad I did. The teacher I was with is one of the school’s new hires. She did a great job in my opinion but after the children had gone she confessed she had had a challenging day with the children. I don’t know how these teachers do this particular level of school. The children are fourteen months up to a little over two. We had seven children and it took all we could do to keep them focused and working in the classroom.
The children did amazingly well considering their age, but they need a lot of help to sit at a table, set a place, put their food on a plate and then eat it. Then there was the diaper changing and the nap time. You’d think nap time would be a rest of the teachers too, but some of the children are fight going to sleep and by the time you get them all asleep, the first ones are waking up.
We had a good day overall and the children are very nice kids, they’re just children. I had fun working with the other teacher and hope to substitute with her again. Then, as I left, I realized I felt a little wobbly myself. If I’ve caught this thing going around, it’s going to be tough, because I’m substituting again tomorrow.
The Big Boy Update: My son worked on his valentines tonight. He did made drawings on twenty-eight cards, each one of them different. He could tell you exactly what he drew on each one. Some were obvious while others were in the realm of five-year-old fantasies.
The Tiny Girl Chronicles: My daughter also worked on her valentines cards for tomorrow’s sharing at school. She was working on drawing a heart (which she could do fairly well). Then she wanted challenges from my husband and me on what to draw. “A person with a green balloon” or “a cupcake and a flower” were some of the drawings she did. I think she could have kept going and drawn a hundred cards, she was having so much fun.
I’m glad I did. The teacher I was with is one of the school’s new hires. She did a great job in my opinion but after the children had gone she confessed she had had a challenging day with the children. I don’t know how these teachers do this particular level of school. The children are fourteen months up to a little over two. We had seven children and it took all we could do to keep them focused and working in the classroom.
The children did amazingly well considering their age, but they need a lot of help to sit at a table, set a place, put their food on a plate and then eat it. Then there was the diaper changing and the nap time. You’d think nap time would be a rest of the teachers too, but some of the children are fight going to sleep and by the time you get them all asleep, the first ones are waking up.
We had a good day overall and the children are very nice kids, they’re just children. I had fun working with the other teacher and hope to substitute with her again. Then, as I left, I realized I felt a little wobbly myself. If I’ve caught this thing going around, it’s going to be tough, because I’m substituting again tomorrow.
The Big Boy Update: My son worked on his valentines tonight. He did made drawings on twenty-eight cards, each one of them different. He could tell you exactly what he drew on each one. Some were obvious while others were in the realm of five-year-old fantasies.
The Tiny Girl Chronicles: My daughter also worked on her valentines cards for tomorrow’s sharing at school. She was working on drawing a heart (which she could do fairly well). Then she wanted challenges from my husband and me on what to draw. “A person with a green balloon” or “a cupcake and a flower” were some of the drawings she did. I think she could have kept going and drawn a hundred cards, she was having so much fun.
Wednesday, February 10, 2016
The Favorite Seat
We have a favorite seat. Or, rather, my children do. It’s strange how, “the favorite seat” evolved because it wasn’t a favorite to start. Initially, my children would come downstairs and select a seat to eat breakfast at. Over time, my son gravitated to the left seat and my daughter seemed to prefer the right seat. Neither child seemed to care which seat they sat in because they were too busy being upset about the color of their cup or the fruit being cut versus whole or any number of other things that make no sense to adults but are completely wail-worthy to the child.
Rather recently my children both seemed to think the right seat was the better choice. The mere fact that a preference was expressed by one child, even in an offhanded manner, meant the other child immediately believed even more strongly that the seat was clearly the choice of winners. To suffer the pain of having to eat breakfast in the same chair, only two feet to the left, simply would not do.
Arguments, battles and insults began to ensue. My husband and I thought we could take advantage of the situation given the issues we’d been having with getting dressed in the morning (not us, them). We told them whoever comes downstairs dressed first would be able to have The Favorite Seat. But this backfired. They would come downstairs not dressed, squat on the chair, request for it to be saved so they could run upstairs to get dressed. As an aside here, they don’t get served breakfast until they’re dressed. This has been the weekday case for a very long time now. Complaints were given that the other child was going to get down and take the seat or that they were going to wait to eat until the first child was done eating in the chair. That is the short list of what we heard over the past few weeks.
So we made a change. I got annoyed on Monday and wrote a schedule on a post-it note. I stuck the note right between the two seats and showed them how they each got two days of the week, alternating back and forth. At the time, they didn’t ask about the fifth day; it was only later that we explained it would be reserved for the child who was the kindest and most gracious throughout the week.
And this solved the problem. Completely. Yesterday my son said to his sister, “let’s go look at the calendar and see who’s day it is.” They figured it out and the one who’s day it wasn’t was happy their day was coming up next. Children are amazing and confusing little creatures.
The Big Boy Update: Tae Kwon Do may have rubbed off on my son. We were doing something the other day involving pretend swords. When I said I had to get back to my work he said, “thank you for fighting me.”
The Tiny Girl Chronicles: My daughter can see some things well, while other things are completely obscured by her vision. We were at a restaurant for lunch and she needed to go to the bathroom. She was able to tell the lines separating the floor tiles. She further was able to tell me we could only step on the blue tiles. The picture below is of the bathroom floor. There are grey tiles and bluish-grey tiles. She could tell which ones were the bluer ones up to five tiles away. We’ve noticed she can tell some things more easily if they’re below her.
Rather recently my children both seemed to think the right seat was the better choice. The mere fact that a preference was expressed by one child, even in an offhanded manner, meant the other child immediately believed even more strongly that the seat was clearly the choice of winners. To suffer the pain of having to eat breakfast in the same chair, only two feet to the left, simply would not do.
Arguments, battles and insults began to ensue. My husband and I thought we could take advantage of the situation given the issues we’d been having with getting dressed in the morning (not us, them). We told them whoever comes downstairs dressed first would be able to have The Favorite Seat. But this backfired. They would come downstairs not dressed, squat on the chair, request for it to be saved so they could run upstairs to get dressed. As an aside here, they don’t get served breakfast until they’re dressed. This has been the weekday case for a very long time now. Complaints were given that the other child was going to get down and take the seat or that they were going to wait to eat until the first child was done eating in the chair. That is the short list of what we heard over the past few weeks.
So we made a change. I got annoyed on Monday and wrote a schedule on a post-it note. I stuck the note right between the two seats and showed them how they each got two days of the week, alternating back and forth. At the time, they didn’t ask about the fifth day; it was only later that we explained it would be reserved for the child who was the kindest and most gracious throughout the week.
And this solved the problem. Completely. Yesterday my son said to his sister, “let’s go look at the calendar and see who’s day it is.” They figured it out and the one who’s day it wasn’t was happy their day was coming up next. Children are amazing and confusing little creatures.
The Big Boy Update: Tae Kwon Do may have rubbed off on my son. We were doing something the other day involving pretend swords. When I said I had to get back to my work he said, “thank you for fighting me.”
The Tiny Girl Chronicles: My daughter can see some things well, while other things are completely obscured by her vision. We were at a restaurant for lunch and she needed to go to the bathroom. She was able to tell the lines separating the floor tiles. She further was able to tell me we could only step on the blue tiles. The picture below is of the bathroom floor. There are grey tiles and bluish-grey tiles. She could tell which ones were the bluer ones up to five tiles away. We’ve noticed she can tell some things more easily if they’re below her.
Tuesday, February 9, 2016
To Visit Africa
Remember the Planet Earth mini-series some years ago? It was narrated by David Attenborough (or Sigourney Weaver, depending on your locale) and showed some of the most stunning videos of our planet and life upon it? I loved that series and Blue Planet, one of the ones that followed. My husband recorded one recently and we both watched it while we ate our lunch and I was just as transfixed watching this series about Africa.
Today we watched our third installment of the series and I thought again, as I’ve done many times in my life, that I’d like to visit Africa. Africa is so mind bogglingly large with so many different things to see that I’ve never bothered to narrow it down to anything other than the simple phrase, “I want to visit Africa someday.”
And that’s when I got sad. I do want to visit Africa, but what I mean more than visit is I want to SEE Africa. Now that I have two small offspring, I want to plan a trip with my family, take a long vacation over the summer months and have a lifetime memorable trip somewhere where we can see the majesty of nature (location TBD) in Africa. But to do so, it helps to see, and we’re currently one family member down in that area.
We are all hoping the future won’t be so literally bleak for my daughter, but for now, trips to visit and see places aren’t as high up on my “wishful thinking” list as they were six months ago. They are by no means off the list, they’re just not holding a spot as high up.
The Big Boy Tiny Girl “I Never Get To” Complaint: My children have both started doing this and it is something I try not to laugh at when they do, because it’s so serious for them even if their logic is faulty. For instance one might ask if they can have a cookie for snack. Upon receiving the answer of ’no’ they promptly wail, “I never get to eat a cookie!” Yesterday they never got to have a bath and the day before it was orange juice. It’s always
Monday, February 8, 2016
We Went to Ghostbusters Tonight
My daughter has been on some special trips with us recently. They were “special” to her in that we tried to make them fun, even though they were for medical reasons. They were “special” to my son, insofar as he wasn’t included and we were away from him, spending time with his sister for several days. So even though the trips weren’t special in our minds as adults, we tried to come up with a way to do something special with my son when we returned.
Last time, we took him to Dave and Busters for dinner. He ate dinner with the two of us and then played lots of games in their arcade. The evening culminated with him selecting something from the little shop with the tickets he’d “won” from playing some of the games. He selected an orange cup with a built-in attached straw that wraps around the outside of the cup. Since that night, the orange cup has turned into a reminder of our evening with my son.
My daughter loves the orange cup and since there’s only one, she frequently asks for it or offers it to friends when they come over. She thinks this cup is the culmination of all things fun, wrapped up into some orange, dish-washable plastic, from Dave and Busters. She asked me yesterday in a whisper, “mommy, can I tell you something?” (Note here that things are always “told” even though usually “asking” is what happens with this type of request.) My daughter wanted to know if we could take her to Ghostbusters?
It took me a minute to realize she was sitting in front of the orange cup with the straw and was talking about Dave and Busters. I told her I’d see what we could do. Tonight, I asked my husband if he thought going there would work with my daughter’s vision? Sure, my son would love it and I knew they would both like the food. But how well would she fare with the games? Would there be ones she could do without seeing what was happening? We decided to risk it, thinking at a minimum there were lots of lights and colors and hopefully there would be more fun than frustration.
When we got there she was excited. She liked the colors and the crazy, bright LED lights everywhere. The noise wasn’t overwhelming to her like we feared it might be after a long day at school and a play date with her friend. We ordered dinner and then went out onto the game floor.
She wandered off a lot. She was in no way worried about losing us in the large space. She’s never gotten lost before, and we’re usually reasonably close. She checked out various games and I steered her towards several she could do with large moving parts (think Price is Right large wheel kind of thing). She loved it.
We went back to eat our dinner and then had time for a few more games. She wandered off more and this time I watched her more closely, seeing how well she was managing in the space. She had no trouble navigating around all the games and people, even in the generally dim area that was also at the same time over-lit by the LED lights on the machines themselves. She had one navigational problem, which was the black standing bar tables. There were a few here and there, usually pushed up against a game for drinks. The table top was just barely over the top of her head. She almost hit several and ran into the pole of one once and the base once. Other than that, no one would have known she had low-vision.
Games finished, we went to the “store” to get stuff with the tokens we’d “won” that the children’t couldn’t see because nowadays they’re all digitally added to the card. My daughter got her orange straw cup and “Rubber”, a green rubber ducky. My son seemed to be happy to have her at his special dinner spot and had a had zero complaints about the night.
The Big Boy Update: My son asked me at breakfast this morning, “mom, do you know when the Emperor fell into the pit in Star Wars?” I told him I did. He said, “that’s like as far down as Rayan and Keira’s basement.”
The Tiny Girl Chronicles: At dinner tonight we were talking about how to use our napkins instead of our clothes to wipe dirty hands clean. I did some of what I thought was very clear explaining about the whole napkin/lap thing but I must have failed because my daughter took her napkin and said to me, “no, mommy, you’re wrong. I’m gonna be right,” and then showed me how it was done.
Sunday, February 7, 2016
The First Sip Is The Hottest
I got a birthday present I am just going to have to talk about because I’m pretty excited about it. My friend gave me a S’well thermos/water bottle. I’ve heard people talking about them recently but hadn’t looked into one, what with my current water bottle doing a relatively good job of holding in the water.
The label and claim on the packaging is that it will keep cold beverages cold for twenty-four hours and hot beverages hot for twelve hours—which is quite a claim. There is a whole lot of technology behind these bottles and I was ready to put it to the test.
I’m not that worried about my cold beverages staying cold. I pass on ice a lot of time at the self-serve beverage counters at restaurants. Water is water and I’m not overly picky about temperature. But hot—hot beverages are another thing altogether. I like my hot beverages hot—almost to the skin-searing, gobbets of flesh dangling from the top of your mouth if you’re not careful temperature.
When I get a beverage at Starbucks I ask for 185 degrees. Milk scalds around 195 degrees, so that’s pushing it close, especially if the barista doesn’t have a lot of experience. My old Keurig had a temperature setting and I had that on the hottest and my hot water tap in the kitchen is just shy of “about to boil off”.
So I thought I’d check out this staying hot feature of the S’well bottle. I made some coffee and added nearly scalded milk I’d microwaved into it, put the lid on and headed off to school with it in the cup holder of my car. I met the other people in our courtyard and after we had gotten coordinated I went back to the car to get my coffee.
I opened up the bottle and took a sip and it was hot. It was “first sip” hot. It was like the first sip of a hot beverage you have. That first sip is always the hottest and the best. From there, the hot tea or coffee or coco begins to cool down in the mug or cup. That first sip is the hottest and there is only one first sip for any given beverage.
I marveled at the little canister because that “first sip” was at least twenty-five minutes after I’d made the coffee and put it in the container. It should have been lukewarm by then. I had to go check on something so I set it down for a few minutes. I came back and opened the bottle and it was still just as hot. I had another “first sip”. I stared at my little bottle and put it back down. Over the next hour I kept going back and confirming the temperature had indeed not dropped. I think I finished the coffee with the last sip still being a first sip.
I’m already looking forward to my morning coffee in my new S’well canister. I think I’m going to drink it in the container, even if I’m not going out.
The Big Boy Update: Where do they hear these things? I was on the phone with a friend with my son in the back seat. I pull in the driveway and tell him I’ll be right in, to head on inside. For no apparent reason he unbuckles, leans right up to me and says, “you are SOOO dumb.” I try not to react because I’m on the phone so he says it again. I don’t know where he heard it, but there were consequences for ungracious behavior (the iPad was removed for the rest of the weekend.) He was cross.
The Tiny Girl Chronicles: My daughter threw a temper tantrum the likes of which I can’t remember recently. She was intentionally doing delay tactics while we were trying to get ready to go out, including excuses and declarations she could’t do things like put on her jacket or shoes. Finally I told her she was going without shoes. Suddenly, the only thing she wanted was shoes. She wouldn’t stay in her car seat as we were preparing to leave the garage so she got put out in the cold in the front yard with no shoes on. She wailed at the front door, saying she wanted shoes and could she please have shoes. I told her she could possibly have shoes when we got to the restaurant IF she had calmed down. She got in the car but continued to be inconsolable, screaming, complaining, crying, wailing and all about the shoes she just had to have. She was finally spent just as we were getting to the restaurant. She got the shoes on and was suddenly completely over everything. She was happy, pleasant, cooperative and friendly for the remainder of lunch. The message was received though, because when I told my children it was time to get their shoes and jackets on to go to Naya’s birthday party later in the afternoon, my daughter got hers on immediately, went to the car, got in and was buckled waiting for my son and me to finish getting ready.
The label and claim on the packaging is that it will keep cold beverages cold for twenty-four hours and hot beverages hot for twelve hours—which is quite a claim. There is a whole lot of technology behind these bottles and I was ready to put it to the test.
I’m not that worried about my cold beverages staying cold. I pass on ice a lot of time at the self-serve beverage counters at restaurants. Water is water and I’m not overly picky about temperature. But hot—hot beverages are another thing altogether. I like my hot beverages hot—almost to the skin-searing, gobbets of flesh dangling from the top of your mouth if you’re not careful temperature.
When I get a beverage at Starbucks I ask for 185 degrees. Milk scalds around 195 degrees, so that’s pushing it close, especially if the barista doesn’t have a lot of experience. My old Keurig had a temperature setting and I had that on the hottest and my hot water tap in the kitchen is just shy of “about to boil off”.
So I thought I’d check out this staying hot feature of the S’well bottle. I made some coffee and added nearly scalded milk I’d microwaved into it, put the lid on and headed off to school with it in the cup holder of my car. I met the other people in our courtyard and after we had gotten coordinated I went back to the car to get my coffee.
I opened up the bottle and took a sip and it was hot. It was “first sip” hot. It was like the first sip of a hot beverage you have. That first sip is always the hottest and the best. From there, the hot tea or coffee or coco begins to cool down in the mug or cup. That first sip is the hottest and there is only one first sip for any given beverage.
I marveled at the little canister because that “first sip” was at least twenty-five minutes after I’d made the coffee and put it in the container. It should have been lukewarm by then. I had to go check on something so I set it down for a few minutes. I came back and opened the bottle and it was still just as hot. I had another “first sip”. I stared at my little bottle and put it back down. Over the next hour I kept going back and confirming the temperature had indeed not dropped. I think I finished the coffee with the last sip still being a first sip.
I’m already looking forward to my morning coffee in my new S’well canister. I think I’m going to drink it in the container, even if I’m not going out.
The Big Boy Update: Where do they hear these things? I was on the phone with a friend with my son in the back seat. I pull in the driveway and tell him I’ll be right in, to head on inside. For no apparent reason he unbuckles, leans right up to me and says, “you are SOOO dumb.” I try not to react because I’m on the phone so he says it again. I don’t know where he heard it, but there were consequences for ungracious behavior (the iPad was removed for the rest of the weekend.) He was cross.
The Tiny Girl Chronicles: My daughter threw a temper tantrum the likes of which I can’t remember recently. She was intentionally doing delay tactics while we were trying to get ready to go out, including excuses and declarations she could’t do things like put on her jacket or shoes. Finally I told her she was going without shoes. Suddenly, the only thing she wanted was shoes. She wouldn’t stay in her car seat as we were preparing to leave the garage so she got put out in the cold in the front yard with no shoes on. She wailed at the front door, saying she wanted shoes and could she please have shoes. I told her she could possibly have shoes when we got to the restaurant IF she had calmed down. She got in the car but continued to be inconsolable, screaming, complaining, crying, wailing and all about the shoes she just had to have. She was finally spent just as we were getting to the restaurant. She got the shoes on and was suddenly completely over everything. She was happy, pleasant, cooperative and friendly for the remainder of lunch. The message was received though, because when I told my children it was time to get their shoes and jackets on to go to Naya’s birthday party later in the afternoon, my daughter got hers on immediately, went to the car, got in and was buckled waiting for my son and me to finish getting ready.
Saturday, February 6, 2016
Single Track Trails
We live across the street from a large natural park. We can run out the entrance of our neighborhood and enter the park onto one of the big trails and then run, bike, walk, stroll for miles. I’ve been in the park many times since we’ve moved to this house. I trained for my first 5K by running in and heading left along the trail. I tried right but there were mild inclines, known as mountainous hills when you first start to run, so I stuck to the left. That right direction I nicknamed, “the hateful route” and to this day we still refer to it that way.
Each year there’s a marathon held in the park. It’s a small marathon, run by one of the local track clubs in the area. The children and I went out one year and watched the runners go by and I thought, “look at those crazy fools running all that way.”
So guess what? I’m going to be one of those crazy fools this year. The date of the race is always about my running partner’s birthday and we’ve talked about it several times as a fun birthday run-thing. This year we decided to do it. We aren’t overly concerned about making the distance of a marathon run, but this race is more challenging. We’re also not worried about running in the changing elevation of the park, which is fairly significant in comparison to some marathons. What we were worried about is the single track trails.
We’ve always run on the bike and bridle trails, not the small, windy, nature trails that branch off from the wide, main trail. These trails are “single track” because they’re really just a path in the woods that’s well-marked. There is enough room for you to walk side-by-side some of the time, if you’re close and want to hold hands. Otherwise, you walk (or run) single-file and admire the view while trying not to trip on the roots and rocks that are just everywhere.
My neighbor and I wanted to run the single-track trails and ultimately run the distance and trails of the marathon beforehand so we had an idea of what to expect. We ran a good portion of the seven miles of single-track trails two weeks ago and had a whole level of tired and sore legs the following day as a result.
Today was our second pass. We had intended on doing all the side trails and then getting in as much of the other main trails as possible. We had to do it out of order because we enter the park trail system from our neighborhood, which is about five miles from the race starting point.
Once we got going we decided it would be good to get the run completed today at the full distance because of schedules and other factors. I called my husband, she called hers and we kept running. Dinner plans were rearranged and we kept running. The sun started to get low in the sky and we kept running.
It was a fairly tough run, especially some of the single track which was so rooty, rocky and muddy I was scared of gashes and head wounds. I fell down three times, but caught myself. Thankfully the running gloves Uncle Bob gave me a while back kept my hands safe. We’re ready for the race in a few weeks. We’re hoping for no rain, snow or freezing March temperatures.
The Big Boy Update: My daughter’s music therapy teacher came to the house today for a class with my daughter. My son was excited and joined in too. At one point he got distracted and went over to pick up the teacher’s phone. She said she couldn’t figure out what he was doing as he held her phone up to his face. She asked him and he told her, “I’m smelling the electricity. I’m a robot now.”
The Tiny Girl Chronicles: I came in from a run today and grabbed the mail before coming in the door. My daughter greeted me at the door and was interested when she saw I had a package in my hands. She asked me where I got it from. I told her China. She then said, “did you run all the way there?”
Fitness Update: We ran a marathon distance today in preparation for our upcoming marathon race held in the state park across from our neighborhood. I am tired. I am going to bed.
Each year there’s a marathon held in the park. It’s a small marathon, run by one of the local track clubs in the area. The children and I went out one year and watched the runners go by and I thought, “look at those crazy fools running all that way.”
So guess what? I’m going to be one of those crazy fools this year. The date of the race is always about my running partner’s birthday and we’ve talked about it several times as a fun birthday run-thing. This year we decided to do it. We aren’t overly concerned about making the distance of a marathon run, but this race is more challenging. We’re also not worried about running in the changing elevation of the park, which is fairly significant in comparison to some marathons. What we were worried about is the single track trails.
We’ve always run on the bike and bridle trails, not the small, windy, nature trails that branch off from the wide, main trail. These trails are “single track” because they’re really just a path in the woods that’s well-marked. There is enough room for you to walk side-by-side some of the time, if you’re close and want to hold hands. Otherwise, you walk (or run) single-file and admire the view while trying not to trip on the roots and rocks that are just everywhere.
My neighbor and I wanted to run the single-track trails and ultimately run the distance and trails of the marathon beforehand so we had an idea of what to expect. We ran a good portion of the seven miles of single-track trails two weeks ago and had a whole level of tired and sore legs the following day as a result.
Today was our second pass. We had intended on doing all the side trails and then getting in as much of the other main trails as possible. We had to do it out of order because we enter the park trail system from our neighborhood, which is about five miles from the race starting point.
Once we got going we decided it would be good to get the run completed today at the full distance because of schedules and other factors. I called my husband, she called hers and we kept running. Dinner plans were rearranged and we kept running. The sun started to get low in the sky and we kept running.
It was a fairly tough run, especially some of the single track which was so rooty, rocky and muddy I was scared of gashes and head wounds. I fell down three times, but caught myself. Thankfully the running gloves Uncle Bob gave me a while back kept my hands safe. We’re ready for the race in a few weeks. We’re hoping for no rain, snow or freezing March temperatures.
The Big Boy Update: My daughter’s music therapy teacher came to the house today for a class with my daughter. My son was excited and joined in too. At one point he got distracted and went over to pick up the teacher’s phone. She said she couldn’t figure out what he was doing as he held her phone up to his face. She asked him and he told her, “I’m smelling the electricity. I’m a robot now.”
The Tiny Girl Chronicles: I came in from a run today and grabbed the mail before coming in the door. My daughter greeted me at the door and was interested when she saw I had a package in my hands. She asked me where I got it from. I told her China. She then said, “did you run all the way there?”
Fitness Update: We ran a marathon distance today in preparation for our upcoming marathon race held in the state park across from our neighborhood. I am tired. I am going to bed.
46
Today is my birthday. I am tired so I’m going to make this short. I had a wonderful day with some of my girlfriends. I spent several hours at the fitness room in the morning. We all met at a hotel/spa and had lunch and then massages. The ladies returned home, changed and then we met our husbands at a restaurant. It was a good day of friends and fun. And bundt cake. They got me mini bundt cakes for my birthday and they were delicious.
The Big Boy Update: My son continues to be challenged when it’s time to make a transition. He can’t put the iPad down to do something else, even if he wants to do that something else. It’s been causing lots of conflicts between him and us as parents. We’re working on ways to help him transition, but we have a long way to go.
The Tiny Girl Chronicles: My daughter’s vision is very poor, but she can see some things. I have been surprised what she can tell on the ground. She can avoid all the lines on the concrete, mall floor, etc. She likes playing the game where we avoid stepping on the lines.
The Big Boy Update: My son continues to be challenged when it’s time to make a transition. He can’t put the iPad down to do something else, even if he wants to do that something else. It’s been causing lots of conflicts between him and us as parents. We’re working on ways to help him transition, but we have a long way to go.
The Tiny Girl Chronicles: My daughter’s vision is very poor, but she can see some things. I have been surprised what she can tell on the ground. She can avoid all the lines on the concrete, mall floor, etc. She likes playing the game where we avoid stepping on the lines.
Thursday, February 4, 2016
Audit Letters
Did I mention before that we were being audited for our federal taxes? I know, I know, I could just search the blog history and find out the answer, but since I write this thing and I can’t remember, then maybe you can’t either. That, or I just have a poor memory. So if I didn’t mention it before, we’re being audited for our 2013 tax year.
We got a letter last year from the IRS which included a list of several categories they would like for us to show proof for what we’d claimed. There were only four categories, which was great, only those four categories constituted the bulk of the work/transactions/complexity surrounding our entire return.
The government conveniently included a single, letter-sized envelope for us to return the stacks of paper we were going to be sending and told us to get busy because they’d like an answer in thirty days. We got busy. I got busy because I was annoyed—we don’t try to cheat the government. We don’t even try to bend the rules or find loop holes or anything. We do “honest taxes”—or at least that’s what we pay our accountant to do. So this bit about “we’re not sure you paid us everything you should have, can you make sure and show us your work?” got me annoyed.
We were most likely audited because several things had changed in our 2013 return from prior years. That, or we were just randomly flagged. Either way, I wanted this potential accusation addressed and cleared up, stat. I worked on the medical receipts and I found in so doing that my record keeping wasn’t as buttoned up as it should have been. In part, this was because we’d never needed to prove what we’d paid before. We paid the bills, sure, but we had never had to show anyone else exactly what bills we’d paid, how we paid them, how far we drove when we did the things that got us the bills in the first place and what medications were prescribed so we could cope with all the bills we’d been paying.
By the time I had our stack of medical records totally in order, spreadsheeted, fretted over and finalized, I had also updated our 2015 medical records to a new level I like to refer to as “Total Thoroughness v2.0”. Were this auditing audacity to happen in the future, I would simply grab the folder, print out the spreadsheet send it off by return mail with a big, “Nice Try” stamped on the front.
Back to 2013 though: my husband was confirming things for the other areas and I was coordinating an overall spreadsheet including everything we’d claimed, had receipts for and/or had documentation supporting the dollars. As I kept totaling everything up I knew we had a problem.
You already know what the problem was, right? The numbers didn’t match up. On the positive side, we had not been as thorough as we could have been in 2013. I was able to add travel mileage for every medical-related expense. I’d gotten summary records from the insurance companies, medical providers and our pharmacy. In so doing, I’d found a good bit of unclaimed expenses. But I was missing proof of payment on several things and my insurance company from 2013 no longer existed. The web site was gone with a “we’re no longer in service” message on the front page. I had multiple, larger expenses I had paid, but I couldn’t prove I’d paid them. And worse yet, I had one large bill I thought I paid in 2013 but found out later had rolled into the next year. So all that combined, we were short.
Nothing could be done about it though. We mailed off the packet and resigned ourselves to a fine, interest and most likely additional auditing for the next twenty-three years. We would also have to come to terms with the stigma of being tax evaders. Well, maybe not all that, we were pretty darned close dollar-wise, but that’s how it felt to me when we realized we were short.
Next, we waited. When the audit deadline (on their end) came around we got some letters. We got a status update letter with two copies of the same single-page letter in the envelope. We also got a second letter in the mail on the same day with another two pages of the same single page letter. Four copies? This must be bad. We must be in serious crap now. The letters said the government had been quite busy but they hadn’t forgotten us. They had graciously extended their own deadline and would be back in touch soon.
We waited again and after another month got an envelope with two pages in it…two of the same page in it, saying thanks for all that paperwork we sent in. It said they had no additional questions and had decided there would be no adjustment on our 2013 Federal Tax Return. Also, have a nice day.
So we’re not tax criminals. We’re back on the good guys team again. Next time, IRS, I’ll be ready for you.
The Big Boy Tiny Girl Nose Explanation: On the way home from school yesterday my daughter was blowing her nose on tissue number two after yelling “mucous!” from the back seat at me. My son said, “Reese is the best nose blower.” I said I agreed. He thought for another second and then said, “and I’m the best nose picker.” I laughed and told him he was definitely correct about that one.
We got a letter last year from the IRS which included a list of several categories they would like for us to show proof for what we’d claimed. There were only four categories, which was great, only those four categories constituted the bulk of the work/transactions/complexity surrounding our entire return.
The government conveniently included a single, letter-sized envelope for us to return the stacks of paper we were going to be sending and told us to get busy because they’d like an answer in thirty days. We got busy. I got busy because I was annoyed—we don’t try to cheat the government. We don’t even try to bend the rules or find loop holes or anything. We do “honest taxes”—or at least that’s what we pay our accountant to do. So this bit about “we’re not sure you paid us everything you should have, can you make sure and show us your work?” got me annoyed.
We were most likely audited because several things had changed in our 2013 return from prior years. That, or we were just randomly flagged. Either way, I wanted this potential accusation addressed and cleared up, stat. I worked on the medical receipts and I found in so doing that my record keeping wasn’t as buttoned up as it should have been. In part, this was because we’d never needed to prove what we’d paid before. We paid the bills, sure, but we had never had to show anyone else exactly what bills we’d paid, how we paid them, how far we drove when we did the things that got us the bills in the first place and what medications were prescribed so we could cope with all the bills we’d been paying.
By the time I had our stack of medical records totally in order, spreadsheeted, fretted over and finalized, I had also updated our 2015 medical records to a new level I like to refer to as “Total Thoroughness v2.0”. Were this auditing audacity to happen in the future, I would simply grab the folder, print out the spreadsheet send it off by return mail with a big, “Nice Try” stamped on the front.
Back to 2013 though: my husband was confirming things for the other areas and I was coordinating an overall spreadsheet including everything we’d claimed, had receipts for and/or had documentation supporting the dollars. As I kept totaling everything up I knew we had a problem.
You already know what the problem was, right? The numbers didn’t match up. On the positive side, we had not been as thorough as we could have been in 2013. I was able to add travel mileage for every medical-related expense. I’d gotten summary records from the insurance companies, medical providers and our pharmacy. In so doing, I’d found a good bit of unclaimed expenses. But I was missing proof of payment on several things and my insurance company from 2013 no longer existed. The web site was gone with a “we’re no longer in service” message on the front page. I had multiple, larger expenses I had paid, but I couldn’t prove I’d paid them. And worse yet, I had one large bill I thought I paid in 2013 but found out later had rolled into the next year. So all that combined, we were short.
Nothing could be done about it though. We mailed off the packet and resigned ourselves to a fine, interest and most likely additional auditing for the next twenty-three years. We would also have to come to terms with the stigma of being tax evaders. Well, maybe not all that, we were pretty darned close dollar-wise, but that’s how it felt to me when we realized we were short.
Next, we waited. When the audit deadline (on their end) came around we got some letters. We got a status update letter with two copies of the same single-page letter in the envelope. We also got a second letter in the mail on the same day with another two pages of the same single page letter. Four copies? This must be bad. We must be in serious crap now. The letters said the government had been quite busy but they hadn’t forgotten us. They had graciously extended their own deadline and would be back in touch soon.
We waited again and after another month got an envelope with two pages in it…two of the same page in it, saying thanks for all that paperwork we sent in. It said they had no additional questions and had decided there would be no adjustment on our 2013 Federal Tax Return. Also, have a nice day.
So we’re not tax criminals. We’re back on the good guys team again. Next time, IRS, I’ll be ready for you.
The Big Boy Tiny Girl Nose Explanation: On the way home from school yesterday my daughter was blowing her nose on tissue number two after yelling “mucous!” from the back seat at me. My son said, “Reese is the best nose blower.” I said I agreed. He thought for another second and then said, “and I’m the best nose picker.” I laughed and told him he was definitely correct about that one.
Wednesday, February 3, 2016
Three Cheers for Grandparents
What would we do without all the help from my children’s grandparents? First, let me say we are fortunate in so many ways when it comes to grandparents. Number one on the list is we have them. Not all children have grandparents who are alive, live close and are able to be a part of their lives. We have not one, but four real live interested and willing grandparents and my children love them dearly.
Some days, they love them better than they love my husband and me. That is as it should be though, because I have to be the hammer sometimes. Grandparents are allowed to spoil their grandchildren—as long as the children don’t expect that spoiling to continue once we take back over as parents.
My in-laws have watched my children for hours up to days while my husband and I did various things. Back in November they watched our children for a whole five days while we went off to Las Vegas and did reckless things like running a marathon and playing the Brittney Spears slot machine.
Of late, we’ve had trips to Detroit. My son is a little disappointed he doesn’t get to go, but he is happy about having special time with his grandparents. My mother has stayed with him for our last two trips. He has had camp outs and slept in his sleeping bag on her floor. He’s had a sleep over and slept on her pull out sofa at my parent’s home. He’s eaten four eggs for breakfast each morning, specially prepared by Mimi, the short-order chef. And he has had a lot of special time with her while we were in a car for hours and hours and hours.
When we get home from a trip in which the grandparents have been watching the children, what is it like? I’ll tell you: there is zero mess all around the house. The dishes have been cleaned and put away. The laundry has been washed, folded and put away, the groceries have been restocked, including some additional fun items we just might like, and the lunches have been prepared and are waiting in the refrigerator for the next morning’s trip to school.
I don’t know how we managed without this great invention called “Grandparents”. My only complaint is they keep going home afterwards, telling us, “It was fun, but it’s your turn now.”
The Big Boy Update: I was rearranging some shelves of clothes in my closet tonight and put on the ball cap I wear every now and again that sits on one of the shelves. My son looked at me and said, “mom, you look like Margaret.” I looked in the mirror at my long hair in a pony tail coming out of the back of the cap and agreed, “I do look a lot like Uncle Jonathan’s girlfriend, Margaret. Good spotting, buddy.”
The Tiny Girl Chronicles: Before bed my husband told my daughter he wore contacts on his eyes to help him see better and that some day she might have special glasses or contacts to help her see better too. He took out his contact and let her feel it and look at it. He told her she could throw it away or flush it down the toilet. Apparently we’ve never let her flush anything down the toilet before because she paused and then said in an incredulous tone, “are you teasing about the toilet?”
Some days, they love them better than they love my husband and me. That is as it should be though, because I have to be the hammer sometimes. Grandparents are allowed to spoil their grandchildren—as long as the children don’t expect that spoiling to continue once we take back over as parents.
My in-laws have watched my children for hours up to days while my husband and I did various things. Back in November they watched our children for a whole five days while we went off to Las Vegas and did reckless things like running a marathon and playing the Brittney Spears slot machine.
Of late, we’ve had trips to Detroit. My son is a little disappointed he doesn’t get to go, but he is happy about having special time with his grandparents. My mother has stayed with him for our last two trips. He has had camp outs and slept in his sleeping bag on her floor. He’s had a sleep over and slept on her pull out sofa at my parent’s home. He’s eaten four eggs for breakfast each morning, specially prepared by Mimi, the short-order chef. And he has had a lot of special time with her while we were in a car for hours and hours and hours.
When we get home from a trip in which the grandparents have been watching the children, what is it like? I’ll tell you: there is zero mess all around the house. The dishes have been cleaned and put away. The laundry has been washed, folded and put away, the groceries have been restocked, including some additional fun items we just might like, and the lunches have been prepared and are waiting in the refrigerator for the next morning’s trip to school.
I don’t know how we managed without this great invention called “Grandparents”. My only complaint is they keep going home afterwards, telling us, “It was fun, but it’s your turn now.”
The Big Boy Update: I was rearranging some shelves of clothes in my closet tonight and put on the ball cap I wear every now and again that sits on one of the shelves. My son looked at me and said, “mom, you look like Margaret.” I looked in the mirror at my long hair in a pony tail coming out of the back of the cap and agreed, “I do look a lot like Uncle Jonathan’s girlfriend, Margaret. Good spotting, buddy.”
The Tiny Girl Chronicles: Before bed my husband told my daughter he wore contacts on his eyes to help him see better and that some day she might have special glasses or contacts to help her see better too. He took out his contact and let her feel it and look at it. He told her she could throw it away or flush it down the toilet. Apparently we’ve never let her flush anything down the toilet before because she paused and then said in an incredulous tone, “are you teasing about the toilet?”
Tuesday, February 2, 2016
The Office Ultrasound
We stayed in Detroit overnight to see Dr. Trese in his office this morning. He planned on doing an ultrasound to see if he could tell what the back of her right eye looked behind the clouded lens capsule, specifically looking to see if the retinal folds had resolved.
In preparation for the appointment we gave my daughter some Benadryl so she would be a little groggy. The procedure is easy for an adult: close your eye and sit still while a one-inch thick wand covered in ultrasound gel is rubbed around on your eyelid. How does a four-year-old handle that though? She was doing fine, lying on the floor looking at her iPad and then when the doctor came in she went nuts, screaming and struggling, not wanting to sit up in the chair or in my husband’s lap. And then, in that special way doctor’s have, Dr. Trese calmly asked her if she was ticklish and she calmed down. She sat completely still for five minutes while he looked at each eye in detail.
I was behind the ultrasound machine they’d rolled in and the medical student and I were trying to get some glimpses of what he was seeing. He printed out four pictures in black and white, two of each eye. My husband who had a clear view of the screen the whole time told me later, “I could see you were trying to watch, if I could have I would have told you not to bother.”
He was right, when Dr. Trese showed us the four pictures I had no idea what we were looking at. With the pregnancy ultrasounds you sometimes get a glimpse of a spine or head and you’ve got a clue. This was just black with a little white “noise” interspersed. Dr. Trese showed us the left eye and some squiggles which he said were the retinal folds which still persisted. Then he showed us the picture of the right eye and said it looked like the folds were absent. Again, not definitive, but signs look potentially positive.
We go back to Detroit for surgery in her right eye on March 7th. He plans on creating an opening in her lens capsule so she can see clearly though the eye. Hopefully the retinal folds will be gone and the pressure will remain stable and if so, he’ll replace the heavy PFO substance with more Silicone Oil. Then…we wait to see if she can see.
It’s that waiting to see if she can see that’s tough. One of the things Dr. Trese suggested we do is shine bright lights into her right eye to stimulate the rods and cones. There is some research in the field of Pleoptics that suggests light stimulation might encourage vision and help prevent amblyopia.
So what have I been doing today since we left? I’ve been shining the brightest light I have directly into my daughter’s eyes per his recommendation. That little LED cell phone light is so bright I can’t even begin to look into without discomfort. But here’s the thing…is she seeing? I’m going to step off the positive platform and climb down into the negative pit for a minute, so bear with me.
I’ve taken my cell phone light and snuck it around her head and gotten it right in front of her right eye and she hasn’t flinched. The first time that happened I nearly cried. But as I’ve done it more, including having her help me hold the light up near her eye, it seems like she knows it’s there, but it’s just not that bothersome. Perhaps that’s because there’s a yellow-colored curtain in the form of a clouded lens blocking the piercing characteristic of the light. She’s told me the light is white, but she can tell that from the left eye that’s getting some of the light rays.
I’ve done this light “work” as I’ve told my daughter it’s called, about fifteen times since we’ve gotten in the car today, including when we were out at lunch. It’s hard to tell what she’s seeing, how bright it is and if things are more difficult to see since last month when the lens capsule wasn’t nearly as opacified.
Okay, update as of twenty seconds ago. I decided to do the same test on my eyes: here’s what it’s like. When the light is near your eye it’s bright, yes, but not uncomfortably so if it’s shining in the periphery of your vision. It’s only when it’s in the direct line of sight that it becomes painfully bright. I’m feeling better about this. I’m getting back on my positive platform now as I think about this because my daughter doesn’t have a central focal point in her right eye that can see anything clearly right now. She just reacted in a similar way when I shined the light in the area of her left eye. She said that yes, she knew the light was there and what did I keep shining that light in her eyes? So maybe things really are moving in a positive direction.
The Big Boy Update: My son has been with my mother, Mimi while we’ve been in Detroit. He was riding to school this morning in Mimi’s older model car. He looked around her dash and then asked, , “Mimi, where’s your screen?”
The Tiny Girl Chronicles: We wanted to do something/get something for my daughter for being so understanding about everything going on with her eyes, the trips, the procedures, etc. After her EUA yesterday we decided to take her to Build-a-Bear at the shopping mall. She selected a white bear with rainbow hearts and dots on it, a dress with black sequins and a rainbow skirt. She picked out the Teenage Mutant Ninja Turtles theme song for the button on the bear’s hand. She did a “heart ceremony” and put a tiny red heart into the bear. Then the lady at the store with the assistance of my daughter stuffed the bear. My daughter is quite fond of her bear, brushing her fur and cleaning it with wet wipes, feeding her teddy graham cookies and singing to her. She named her “Blastoff”.
Monday, February 1, 2016
No Bad News
I think this is the best title I can come up with for today’s post. Or maybe “No Worse News” would be more accurate but since I’m an optimist, I’m going to go with the first title. Today, my daughter’s retinal specialist looked at her for the first time under anesthesia since he operated on her right eye on December 19th. My husband and I have been preparing for today in multiple ways so that we could give Dr. Trese what we hoped was accurate, non-biased information on how my daughter’s vision has been progressing/changing since we last saw him. The thing is, “accurate and unbiased” are both tricky things with a four-year-old who can’t and won’t tell you what’s going on.
That meant we had to base everything on our observations. We think she can see light and colors fairly well in the right eye, possibly knows directions where things are more light than other areas. The left eye seems to be going slowly downhill. This is a regular discussion because we’ll see a good sign and get excited things are improving and then see five worse things and feel our evaluation of slowly degrading vision is probably more accurate. This morning we shared our thoughts with Dr. Trese before he took my daughter into the operating room.
There was a lot of information when Dr. Trese came out so to break it down by eyes and talk about the right eye first. Her natural lens was removed on December 19th. It was spherophakic, meaning more like a sphere than like an almond shape. Removing the natural lens isn’t a tragedy, people have it done all the time. Anyone who has had cataract surgery has had their natural lens removed and an artificial lens implanted. The way her lens was removed was via a hole incised in the back of her lens capsule. Think of the lens capsule as the shell coating on an M&M and the chocolaty part inside as the lens. They removed the chocolate part and left the lens capsule in place. (As an aside here, I don’t have the chocolaty lens part in my eyes any more and I see just fine with artificial lenses.)
During the December 19th surgery, Dr. Trese put Silicon Oil and PFO into the back portion of my daughter’s right eye. The Silicon Oil helped increase the pressure to a normal level and the PFO was a heavy substance that would act against the retinal folds in the back of her eye—provided she spend time on her back so that it could roll onto the posterior part of the retina. My daughter has been my absolute hero for spending so much time on her back.
There was a danger the PFO heavy substance might propagate into the front her eye, entering via the hole in the lens capsule from where the natural lens was removed. My daughter, again, was careful to never lean all the way forward or sleep on her stomach, or lie face down so that the danger of migration was as low as possible. (Our thanks go out to her teachers at school for all their accommodations in helping my daughter find alternate ways to work more upright.)
Today we found out none of the PFO had moved into the anterior portion of her eye. Dr. Trese expects to keep the PFO in her eye another month, possibly two months. After that point my daughter can do as many headstands and forward rolls as she’d like.
There is a compromise though with the Silicone Oil and PFO. It can cause opacification of the lens capsule. Dr. Trese had already seen some opacification when we had our in-office visit in January and today he confirmed that significant portions of the front of her lens capsule had opacified. The solution to this is to open a hole in the capsule in the main field of vision (center). This can be easily done, but he wants to wait until next month (his current plan) and remove the PFO at the same time.
It was hard for him to see in the back of my daughter’s right eye because in order to see into the eye, it needs to be clear. On the great news front, both of her corneas look quiet and clear, but he needed to see through the lens capsule into the back of her eye to determine how well the PFO has been doing it’s job. He drew us a picture and pointed out a crescent spot that was clear in her lens capsule that he was able to see through. From that vantage point he thinks he saw her optic nerve in an area that wasn’t surrounded by folds, which would be fantastic news.
Via a team approach, our pediatric Ophthalmologist asked if Dr. Trese could get a refraction done on her right eye so we could get a corrective lens. Then, as her retina heals and recovers (we’re six weeks into a four-month process) her brain could make more sense of the terribly blurry world she’s seeing through the right eye. They tried, but due to the clouded lens capsule they weren’t able to get a meaningful reading.
Tomorrow morning we’re going to go to Dr. Trese’s office where they will perform an ultrasound on her right eye to get a view of what’s happening behind the clouded lens capsule. For now and in summary on the right eye:
Next, let’s talk about the left eye, which has not had any surgical intervention thus far. The cornea and lens capsule in her left eye look fine. She has a spherofakic lens, which remains in place. Her functional and form vision is coming almost exclusively from her left eye at this time. The pressure has been unmeasurably low for many months. It appears the ciliary bodies are damaged and aren’t producing the normal amount of fluid. She also has significantly detached retinas bordering on the sharpei dog-type of wrinkly. There might be a large retinal tear, causing a portion of her visual field to be permanently lost. While the right eye was being addressed, Dr. Trese didn’t want to do anything to the left eye unless necessary because doing do might disrupt the vision she has remaining.
Today we discussed prior to the EUA the possibility that Dr. Trese would inject Healon into the posterior portion of her left eye to increase the pressure. This would hopefully help the eye recover. This was based on our observations and concern that the left eye was fading in it’s visual ability. We didn’t want him to have to do anything, but we were concerned that doing nothing might be worse. When Dr. Trese came out to talk to us he said he thought her left eye had improved, possibly by even 10%. He said it was a better course to do nothing and to wait another month and re-evaluate if we didn’t have to do something that wasn’t side-effect and risk-free
I am thrilled to hear her left eye may be recovering on it’s own. We talked about the ciliary bodies in both eyes and he believes whatever the initial insult (mystery of the year) was, was something that acted on the cilliary bodies first, which caused the reduction in pressure and ultimately triggered a cascading effect on both her eyes.
The Big Boy Update: At Bring Your Parents to School day on Friday my son was putting together a puzzle of North America. He was looking at one piece rather intently and then said to us, “Cuba looks like a Jet Ski.”
The Tiny Girl Chronicles: Swimming! My husband and daughter are happily in the pool at the hotel which is just on the other side of the wall to our room. I can hear her happily screaming and laughing. I gotta get outta here and get my suit on, folks!
That meant we had to base everything on our observations. We think she can see light and colors fairly well in the right eye, possibly knows directions where things are more light than other areas. The left eye seems to be going slowly downhill. This is a regular discussion because we’ll see a good sign and get excited things are improving and then see five worse things and feel our evaluation of slowly degrading vision is probably more accurate. This morning we shared our thoughts with Dr. Trese before he took my daughter into the operating room.
There was a lot of information when Dr. Trese came out so to break it down by eyes and talk about the right eye first. Her natural lens was removed on December 19th. It was spherophakic, meaning more like a sphere than like an almond shape. Removing the natural lens isn’t a tragedy, people have it done all the time. Anyone who has had cataract surgery has had their natural lens removed and an artificial lens implanted. The way her lens was removed was via a hole incised in the back of her lens capsule. Think of the lens capsule as the shell coating on an M&M and the chocolaty part inside as the lens. They removed the chocolate part and left the lens capsule in place. (As an aside here, I don’t have the chocolaty lens part in my eyes any more and I see just fine with artificial lenses.)
During the December 19th surgery, Dr. Trese put Silicon Oil and PFO into the back portion of my daughter’s right eye. The Silicon Oil helped increase the pressure to a normal level and the PFO was a heavy substance that would act against the retinal folds in the back of her eye—provided she spend time on her back so that it could roll onto the posterior part of the retina. My daughter has been my absolute hero for spending so much time on her back.
There was a danger the PFO heavy substance might propagate into the front her eye, entering via the hole in the lens capsule from where the natural lens was removed. My daughter, again, was careful to never lean all the way forward or sleep on her stomach, or lie face down so that the danger of migration was as low as possible. (Our thanks go out to her teachers at school for all their accommodations in helping my daughter find alternate ways to work more upright.)
Today we found out none of the PFO had moved into the anterior portion of her eye. Dr. Trese expects to keep the PFO in her eye another month, possibly two months. After that point my daughter can do as many headstands and forward rolls as she’d like.
There is a compromise though with the Silicone Oil and PFO. It can cause opacification of the lens capsule. Dr. Trese had already seen some opacification when we had our in-office visit in January and today he confirmed that significant portions of the front of her lens capsule had opacified. The solution to this is to open a hole in the capsule in the main field of vision (center). This can be easily done, but he wants to wait until next month (his current plan) and remove the PFO at the same time.
It was hard for him to see in the back of my daughter’s right eye because in order to see into the eye, it needs to be clear. On the great news front, both of her corneas look quiet and clear, but he needed to see through the lens capsule into the back of her eye to determine how well the PFO has been doing it’s job. He drew us a picture and pointed out a crescent spot that was clear in her lens capsule that he was able to see through. From that vantage point he thinks he saw her optic nerve in an area that wasn’t surrounded by folds, which would be fantastic news.
Via a team approach, our pediatric Ophthalmologist asked if Dr. Trese could get a refraction done on her right eye so we could get a corrective lens. Then, as her retina heals and recovers (we’re six weeks into a four-month process) her brain could make more sense of the terribly blurry world she’s seeing through the right eye. They tried, but due to the clouded lens capsule they weren’t able to get a meaningful reading.
Tomorrow morning we’re going to go to Dr. Trese’s office where they will perform an ultrasound on her right eye to get a view of what’s happening behind the clouded lens capsule. For now and in summary on the right eye:
- The pressure in the eye remains stable at normal pressure
- The PFO will stay in place one or more months
- It looks like it’s been doing it’s job well
- The lens capsule is going to be left as is until the PFO is removed and then Dr. Trese will open up and hole in the front so that she can see much better
- At that time they will get a refraction done on the so that a corrective lens can be made so that what she sees is clearer.
Next, let’s talk about the left eye, which has not had any surgical intervention thus far. The cornea and lens capsule in her left eye look fine. She has a spherofakic lens, which remains in place. Her functional and form vision is coming almost exclusively from her left eye at this time. The pressure has been unmeasurably low for many months. It appears the ciliary bodies are damaged and aren’t producing the normal amount of fluid. She also has significantly detached retinas bordering on the sharpei dog-type of wrinkly. There might be a large retinal tear, causing a portion of her visual field to be permanently lost. While the right eye was being addressed, Dr. Trese didn’t want to do anything to the left eye unless necessary because doing do might disrupt the vision she has remaining.
Today we discussed prior to the EUA the possibility that Dr. Trese would inject Healon into the posterior portion of her left eye to increase the pressure. This would hopefully help the eye recover. This was based on our observations and concern that the left eye was fading in it’s visual ability. We didn’t want him to have to do anything, but we were concerned that doing nothing might be worse. When Dr. Trese came out to talk to us he said he thought her left eye had improved, possibly by even 10%. He said it was a better course to do nothing and to wait another month and re-evaluate if we didn’t have to do something that wasn’t side-effect and risk-free
I am thrilled to hear her left eye may be recovering on it’s own. We talked about the ciliary bodies in both eyes and he believes whatever the initial insult (mystery of the year) was, was something that acted on the cilliary bodies first, which caused the reduction in pressure and ultimately triggered a cascading effect on both her eyes.
The Big Boy Update: At Bring Your Parents to School day on Friday my son was putting together a puzzle of North America. He was looking at one piece rather intently and then said to us, “Cuba looks like a Jet Ski.”
The Tiny Girl Chronicles: Swimming! My husband and daughter are happily in the pool at the hotel which is just on the other side of the wall to our room. I can hear her happily screaming and laughing. I gotta get outta here and get my suit on, folks!
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