The initial excitement of having his first broken bone has worn off for my son. He needs help taking his shirt off and putting pajamas or other tops on. He can’t put his seatbelt on himself. The cast above the elbow, locking it in a ninety degree angle, is unwieldy and adds pressure on his arm because he doesn’t want to wear the over the shoulder, around the neck sling. And the cast itches just inside a location he can’t get to with his finger no matter how hard he tries.
He’s realizing now that seven weeks is going to be a long time. We think it’s going to be seven weeks, we’re not altogether sure yet. Yesterday the doctor told us it would be one week in the temporary cast while the swelling goes down and then six weeks in the permanent cast. We’ll find out more in a week on total duration, but my son isn’t happy.
He also doesn’t want people to know how he broke his arm. Technically, he was doing something at Parkour camp he shouldn’t have been. I’m not sure if it was that he shouldn’t be doing that thing at that time, or he shouldn’t have been doing it at all. Perhaps my son realizes he made a poor choice and got hurt as a result. He’s embarrassed about it. He really shouldn’t be; he could have done something to hurt himself at any point in time and broken a bone.
I tried to talk to him in the car on the way to lunch about it. He says he wants to tell people, “it’s none of your business” if they ask how he broke his arm. I told him broken bones are sort of fun in that they’re the only injury other people get to participate in—by signing the cast. That in a way, having a broken bone is sort of cool. Sometimes, you even got out of doing certain activities because you couldn’t with the cast on.
But he was having none of it. He’s upset as of today and just wants his unbroken arm back. He’s not in any real discomfort now that the bone has been isolated from moving, but that doesn’t make his pride hurt any less.
The Big Boy Update: Edna has cleaned our house for many years and I consider her a close family friend. My son has known her ever since he was a baby but he doesn’t interact with her that much, although she is very kind to him, what with having both children and grandchildren and knowing just how to talk to a young boy. She told me today last ween when my son saw her, after we’d been away for a month, he said, “Edna is here! Oh, Edna, I missed you so much. I haven’t seen you in a long time.” He went into the laundry room and gave her a hug. She was very touched by my son’s unexpected words and affection.
The Tiny Girl Chronicles: My daughter loves playing Hangman. She does a verbal version in which there really isn’t a way to lose, you just keep going until you figure out the word. She loves coming up with good words. In the tub the other night she asked me to write down some words she had come up with for future use in Hangman (apparently not against me). She had a pretty good list including: insect, finger, xylophone, cymbal, symbol, lotion, myth, snorkeling, towel, koala, toilet, and gambling.
Walking the Hot Dog: Margaret and I went for a brisk walk in the park yesterday. I was trying to figure out how far we could go before having to turn around to make it back in time for dinner when my dog nosed up against the leg she had been heeling on in a different than normal way. We had kept her hydrated at the over two miles so far and it was hot but it wasn’t bad in the shaded woods. I suddenly realized she might not have the stamina to go double the distance we’d walked and I got very worried because she had to make it home. I also worried that the gravel was hurting her feet. I had been trying to keep her on more of the smooth surfaces of the trail, but there were rocky bits. We turned around and doused her in cool water from the fountain pulling water from under ground not far back. She made it home and I think was completely fine, including her pads. She enjoyed the walk and did a very nice job of heeling and dropping into a down whenever fast bicycles came by, staying safe the entire time even though she got tired.
Friday, August 9, 2019
Thursday, August 8, 2019
Buckle Fracture
Okay, so this post isn’t going to be about my daughter, but my son instead. In update though, my daughter misdoing incredibly well. She’s happy, she’s busily working on things all through the day, including setting the table for dinner and cleaning up the plates afterwards. This is better (by way of how she’s feeling) than we could have possibly expected.
This morning she went to the post-surgical follow-up appointment. Everything about the eye looks as good as can be and on top of things, my daughter isn’t in that much discomfort. This afternoon she had the patch off and glasses back on and was just normal her. With one exception. Okay, two.
The first is she doesn’t want to talk about how the feye, or she feels. The second is that she seems a lot happier, almost as if the weight of the upcoming surgery was lifted from her now that surgery is over and she’s more carefree. She’s not on any medication other than a change in drops. Hopefully that trend continues.
My son, on the other hand, or on the right arm perhaps I should say, had a more interesting day. He woke up after yesterday’s fall on his right wrist from about four feet while at parkour camp to find his hand and arm no better. Something was definitely going on and the best way to find out more was to go to the orthopedist.
Three X-rays later and we had a diagnosis: a buckle fracture of the right radius. In the images below, the red arrow points to the fracture. Children’s bones aren’t as solidified as adults so in this case, the bone just buckled under the impact. The ulna bone on the right of the images is nice and smooth all the way down. That’s what the radius looked like pre-fall.
He has a temporary cast on now while the swelling goes down. In a week he’ll get a standard cast that he’ll wear for another six weeks. He wasn’t that upset about it but was certainly glad when it was isolated from movement in the cast and the pain went down.
The cast is up around his elbow, so it’s going to be a lot of managing for the next few weeks. He can’t buckle his seat belt, needs help with clothes and asked me when the cast first went on, “how do I go to the bathroom?” Fortunately he figured that one out.
The Big Boy Update: My son got to watch television most of the day and didn’t seem to mind his cast at all. Tonight though it was wearing on him with its weight and unwieldiness. He said, “I just want my old arm back.”
The Tiny Girl Chronicles: My daughter told me the other day, “I like my family more than anything."
This morning she went to the post-surgical follow-up appointment. Everything about the eye looks as good as can be and on top of things, my daughter isn’t in that much discomfort. This afternoon she had the patch off and glasses back on and was just normal her. With one exception. Okay, two.
The first is she doesn’t want to talk about how the feye, or she feels. The second is that she seems a lot happier, almost as if the weight of the upcoming surgery was lifted from her now that surgery is over and she’s more carefree. She’s not on any medication other than a change in drops. Hopefully that trend continues.
My son, on the other hand, or on the right arm perhaps I should say, had a more interesting day. He woke up after yesterday’s fall on his right wrist from about four feet while at parkour camp to find his hand and arm no better. Something was definitely going on and the best way to find out more was to go to the orthopedist.
Three X-rays later and we had a diagnosis: a buckle fracture of the right radius. In the images below, the red arrow points to the fracture. Children’s bones aren’t as solidified as adults so in this case, the bone just buckled under the impact. The ulna bone on the right of the images is nice and smooth all the way down. That’s what the radius looked like pre-fall.
He has a temporary cast on now while the swelling goes down. In a week he’ll get a standard cast that he’ll wear for another six weeks. He wasn’t that upset about it but was certainly glad when it was isolated from movement in the cast and the pain went down.
The cast is up around his elbow, so it’s going to be a lot of managing for the next few weeks. He can’t buckle his seat belt, needs help with clothes and asked me when the cast first went on, “how do I go to the bathroom?” Fortunately he figured that one out.
The Big Boy Update: My son got to watch television most of the day and didn’t seem to mind his cast at all. Tonight though it was wearing on him with its weight and unwieldiness. He said, “I just want my old arm back.”
The Tiny Girl Chronicles: My daughter told me the other day, “I like my family more than anything."
Wednesday, August 7, 2019
Implant Day
Today is implant day. I’ve said it’s the most significant surgery my daughter has had on her eyes, but after talking to her doctor, I might not be correct on that. She’s had a lot done on the interior of her eyes including: removing vitreous, adding silicon oil, adding healon, adding perfluorocarbon, removing the natural lenses, opening the lens capsules, re-opening scar tissue growth behind her iris, injection of Avastin to address malformed vessels and injection of steroids to help her eyes heal. And that’s just what I can remember at the moment, there may be more.
Today’s surgery will add a device on the surface of my daughter's eye to control her persistent high pressure, or glaucoma. The device will be permanent and will remain in her eye indefinitely. It will help drain fluids since her left eye is unable to do so naturally. The implant's job is to allow fluids produced by my daughter's ciliary bodies to drain via that shunt, if and when her pressure is high. It intelligently drains fluid as needed and will keep her eye at normal pressure. In normal eye function, the aqueous bodies produce fluid continually and the eye maintains normal pressure by draining fluid over time. Not unlike how we produce saliva continually and swallow to maintain a comfortable level in our mouths.
In the fall of 2015, my daughter got an infection in her eyes that triggered a series of catastrophic events. Dr. Trese theorizes that the infection caused damage to the ciliary bodies, causing them to stop producing aqueous fluid. Both of her eyes dropped to zero pressure, her retinas collapsed inward and fluid filled in behind them. Her retinas sustained significant damage over the next several years. The detached retinas weren’t the typical detachment and couldn’t just be reattached. It took a long time, but eventually most of the retinas reattached. That’s just the retinas. There were other things going on in her eyes due to malformations that contributed to her loss of vision In all of this, the one thing that seemed to recover in her eyes were those fluid producing ciliary bodies. They’re now happily producing fluid, but unfortunately her eye is no longer able to drain it out in a normal fashion.
In a way, that could be a good sign, since something in her eyes recovered and regained function, maybe other areas of her eyes could as well. The ciliary bodies are only one small piece in the overall puzzle that is my daughter’s eyes and many, many more things would have to occur for her to have significant or even minor vision to return.
Today’s procedure is called a Pars Plana Implant in which a device, in this case an Ahmed Glaucoma Valve with Pars Plana Clip is inserted under a flap of the sclera, or outer, white area in the eye. The Pars Plana part refers to the area of the eye it will be implanted, Dr. Freedman will create the flap and insert the device in an area above and behind her pupil. Then Dr. Freedman will insert a shunt into center portion of her eye so fluid will have a way to drain out. The device looks like this:
It will look like this when inserted in her eye:
Dr. Freedman recommended my daughter stay home from school for the remainder of the week and stay quiet and calm if possible. She also said she didn’t think my daughter would be in much discomfort, which is good, because I thought this would be worse than the cataract surgery. When I mentioned it, Dr. Freedman said cataract surgery stitches were the worst and that this will be higher up and further back and likely won’t be as uncomfortable to her. She’s still in surgery as I write this part of the post so we won’t know until later today.
Restrictions for my daughter are significantly less than I expected. She only has to wear eye shields at night for a week and after two weeks she can resume normal activity. For two weeks she’ll skip P.E. and will need to sit on the side during recess to make sure she isn’t run into by other children that might jar her eye. Dr. Freedman said she doesn’t expect her much in the way of vision change from the procedure as she's working on the exterior of her eye aside from the shunt. My daughter has been using the minimal vision she has a good bit lately and relies on it to move in space and avoid obstacles (which she is able to discern some of the time) so keeping that vision intact would be very helpful.
My daughter is out of surgery now and we’ve had a meeting with Dr. Freewman on how it went. The implant went well. Her pressure was a high 47, which is in the range we had been consistently seeing for months now. Dr. Freedman opened a flap in the far back of my daughter's eye in such a way that the only stitch would be at the far back of her eye, in the center of the c-shaped incision. Because my daughter's eye was extra small, she had to trim the shunt. My daughter has microphthalmia which literally means 'small eye’. Dr. Freedman has a very precise way to measure and shorten the shunt and made sure it wasn’t close to the optic nerve when inserted.
We’ll see tomorrow if there is any discomfort or change in vision when my the bandages come off after staying on overnight. Dr. Freedman added healon to her eye. Healon is thick, sort of like honey in consistency and will permeate out over the next day or two. She also added a bubble of air to her eye but that, too, will dissipate quickly.
There are some questions we have to wait to find out the answers to. First of all, will the shunt be able to drain fluid fast enough to keep my daughter’s pressure in normal range? The tube is tiny, but the biggest that could go in. Since my daughter had fluid production problems in the past, we’re hoping the shunt will be enough keep her eye at normal pressure. If not, we’ll have to continue some of the drops we’ve been doing which will slow fluid production in the eye.
Tomorrow we go in to have the bandages removed. Her pressure could vary wildly from two to forty-two as the first day there is a lot in play with the added fluids and the process of surgery. So question one is have we solved the glaucoma problem? We won’t know tomorrow and likely won’t know for sure until we have some data collected over the next month or two. Fortunately we’re in a study at Duke and have a tonometer at home and will measure her pressure regularly.
The second question is will she have any return of vision. This question is the one I don’t want to write about because I’m fairly upset about it. Early last spring my daughter started having a decline in vision. And by last spring I mean 2018, not 2019. Since then we’ve been slowly doing things to try and address it. In retrospect I don’t think we moved quickly enough when we realized there was a problem. Some of this is because it’s hard to get a pressure reading from my daughter but not all of it. We knew something was going on. We didn’t realize the decline in vision was truly pressure-related until much later. We tried medication, hoping, I think, that it was temporary and would resolve with time, especially given that she’d always had low pressure. When that didn’t work we added more drops, then we increased the frequency of the drops. Then we added a pill. Then we increased the frequency of the pill. And we kept on, until it was clear—far too long later upon reflection, that nothing was working and my daughter had a silent vision killer—glaucoma—that was taking the precious little vision she had left.
It was at that point that we all agreed it was time to consult Dr. Freedman, a pediatric glaucoma specialist at Duke. With one visit, we had a plan to put in this implant but that, too, took a long time with one surgery with Dr. Trese first, then our vacations and finally, today with the implant. It’s taken it’s toll though. I clearly remember Dr. Trese saying her optic nerve looked healthy (for the most part). I’m not going back through my surgical notes right now, I have too many people who want to hear how today went, but he never said the optic nerve was significantly damaged. Today, that’s what Dr. Freedman told us.
She also told us it was almost without question because of the glaucoma. I knew glaucoma caused irreparable damage. I knew she had ongoing, unmitigated significantly high pressure. So why didn’t I push for more to be done? Our doctors are wonderful, I don’t fault them. My daughter’s healthcare is in my hands, I must be her advocate. But I didn’t advocate fast enough in my opinion. That damage is irreversible. The vision she’s lost is gone. There is very little chance we’re going to get anything better vision-wise than we have today—and what she has is so very, very little. My daughter didn’t need to lose more. Possibly we could have saved some if I’d taken more action, been more insistent we look into other options, not wasted time hoping things would just get better. Possibly.
Dr. Freedman is a realist, and I like that. She said observed a dip in the optic nerve area, sort of a cup-shaped indentation. Think of the optic nerve as a pipe filled with a million wires. When any of the wires are damaged, they shrivel up and die. And a lot of hers have died. The indentation indicates a lot of the optic nerve has shriveled up and died. I mentioned Dr. Trese’s regenerative medicine and she said that indeed, there could possibly be hope, but that’s not today. The regenerative medicine is also more for the rods and cones of the retina, not for the optic nerve. Our optic nerves are a part of our spinal cord and when the spinal cord is damaged, it doesn’t recover. Is there a chance? Yes, she said there’s always a chance some healing might occur, but realistically, the vision she has today will probably be the best she’ll ever have again.
We don’t talk to my daughter any more about possibly getting vision back, because with her eyes, it’s not likely. We talk about not losing more vision. Dr. Freedman said this was definitely the right decision, going with the implant. I hope it works and we have no more pressure issues in her left eye.
Some good news though was that she encountered very little scar tissue when she made the “Scleral Patch Graph” which means lifting up a piece of the sclera, or white part of the eye, and putting the implant under the flap before stitching it back down. The vitrectomy Dr. Trese did in which he removed all her vitreous also looked good. Although there is a small bit of vitreous he didn’t remove. She understood why he didn’t when she saw it as it looks like removing it might cause the retina to detach in that area. If, however, that piece of vitreous ever breaks off (and this can happen) it could possibly block the shunt and prevent it from doing its job of draining excess aqueous fluid. It’s a low probability, but something to look out for in the years to come. One thing that’s good is my daughter’s cornea. She has a malformation where some of the outermost edges are shortened, but overall the cornea is in good shape.
We talked about my daughter’s right eye, what with the left eye looking like it has no chance for a return of vision. In its current state, my daughter’s right eye as internal scar tissue that completely occludes her ability to see anything. We don’t think her retina is functioning so opening that scar tissue again (Dr. Trese has done this three times only to have it grow back) would be moot and is a risk not worth taking. One thing I did find out though was that if there is ever a chance for her right eye to gain some vision back, possibly with the regenerative medicine Dr. Trese is working on or stem cell implantation, there is hope she will be able to have her brain understand what her eye is seeing. A child born blind, or a child that looses vision very early misses out on the brain mapping of vision, but because my daughter had sight up until four-years-old, her brain has mapped those visual pathways and would be able to interpret what her eye sees. It’s a huge long shot with a lot of variables, but I’m not completely, totally writing off the right eye forever. For now though, her right eye sees nothing, including we think even light perception.
Dr. Freedman was finishing up talking to us when we both got a phone call. My son fell from four feet and had suffered hyper flexion of his wrist at parkour camp. They put him on the phone and he sounded scared and about to cry so I left my husband with my daughter and I headed off to get my son.
I had him checked out and he doesn’t have a any dislocated bones in his wrist and all signs appear nothing is broken. It’s bothering him badly though. My chiropractor recommended having him put his wrist in a bucket of ice water for two minutes every few hours to reduce the already visible inflammation. My son hated it. It hurts—a lot—but he made the two minutes. I think we’re going to have both children home tomorrow, convalescing.
Back to my daughter. She woke up after surgery and you wouldn’t know anything had been done to her eye. It’s bandaged, but otherwise she’s home and is her normal self. I’m asking her to remain calm and not do anything vigorous, which is hard for her. We’re going to make some rubber band bracelets I think in a few minutes when she wants to take a break from her audio book.
Long, long post. Thanks to everyone for the words of encouragement and well-wishes. As my son told me in the car today when I explained to him about his sister’s vision outlook for the future, “I think Reese is a better person because she’s blind. I think she looks great with her glasses on. And she’s smart. She’ll overcome a lot and can do so many things, even though she’s blind. She even found me the other day when we were playing hide and seek even though she couldn’t see."
The Big Boy Update: As my daughter and husband left to go to the hospital this morning my son uncharacteristically said, “Goodbye Reese. I love you."
The Tiny Girl Chronicles: My daughter likes to sing on the phone to Mimi. She makes up songs and tunes as she goes and many times it’s a way to find out how she feels about things or how she sees the world. My mother told me the other day some of the words she sang were, “I can do difficult things, even though I’m blind.” “I am a wonderful girl.” “I am beautiful.” It warms my heart to know she doesn’t dislike herself and thinks she’s capable, despite the blindness.
Today’s surgery will add a device on the surface of my daughter's eye to control her persistent high pressure, or glaucoma. The device will be permanent and will remain in her eye indefinitely. It will help drain fluids since her left eye is unable to do so naturally. The implant's job is to allow fluids produced by my daughter's ciliary bodies to drain via that shunt, if and when her pressure is high. It intelligently drains fluid as needed and will keep her eye at normal pressure. In normal eye function, the aqueous bodies produce fluid continually and the eye maintains normal pressure by draining fluid over time. Not unlike how we produce saliva continually and swallow to maintain a comfortable level in our mouths.
In the fall of 2015, my daughter got an infection in her eyes that triggered a series of catastrophic events. Dr. Trese theorizes that the infection caused damage to the ciliary bodies, causing them to stop producing aqueous fluid. Both of her eyes dropped to zero pressure, her retinas collapsed inward and fluid filled in behind them. Her retinas sustained significant damage over the next several years. The detached retinas weren’t the typical detachment and couldn’t just be reattached. It took a long time, but eventually most of the retinas reattached. That’s just the retinas. There were other things going on in her eyes due to malformations that contributed to her loss of vision In all of this, the one thing that seemed to recover in her eyes were those fluid producing ciliary bodies. They’re now happily producing fluid, but unfortunately her eye is no longer able to drain it out in a normal fashion.
In a way, that could be a good sign, since something in her eyes recovered and regained function, maybe other areas of her eyes could as well. The ciliary bodies are only one small piece in the overall puzzle that is my daughter’s eyes and many, many more things would have to occur for her to have significant or even minor vision to return.
Today’s procedure is called a Pars Plana Implant in which a device, in this case an Ahmed Glaucoma Valve with Pars Plana Clip is inserted under a flap of the sclera, or outer, white area in the eye. The Pars Plana part refers to the area of the eye it will be implanted, Dr. Freedman will create the flap and insert the device in an area above and behind her pupil. Then Dr. Freedman will insert a shunt into center portion of her eye so fluid will have a way to drain out. The device looks like this:
It will look like this when inserted in her eye:
Dr. Freedman recommended my daughter stay home from school for the remainder of the week and stay quiet and calm if possible. She also said she didn’t think my daughter would be in much discomfort, which is good, because I thought this would be worse than the cataract surgery. When I mentioned it, Dr. Freedman said cataract surgery stitches were the worst and that this will be higher up and further back and likely won’t be as uncomfortable to her. She’s still in surgery as I write this part of the post so we won’t know until later today.
Restrictions for my daughter are significantly less than I expected. She only has to wear eye shields at night for a week and after two weeks she can resume normal activity. For two weeks she’ll skip P.E. and will need to sit on the side during recess to make sure she isn’t run into by other children that might jar her eye. Dr. Freedman said she doesn’t expect her much in the way of vision change from the procedure as she's working on the exterior of her eye aside from the shunt. My daughter has been using the minimal vision she has a good bit lately and relies on it to move in space and avoid obstacles (which she is able to discern some of the time) so keeping that vision intact would be very helpful.
My daughter is out of surgery now and we’ve had a meeting with Dr. Freewman on how it went. The implant went well. Her pressure was a high 47, which is in the range we had been consistently seeing for months now. Dr. Freedman opened a flap in the far back of my daughter's eye in such a way that the only stitch would be at the far back of her eye, in the center of the c-shaped incision. Because my daughter's eye was extra small, she had to trim the shunt. My daughter has microphthalmia which literally means 'small eye’. Dr. Freedman has a very precise way to measure and shorten the shunt and made sure it wasn’t close to the optic nerve when inserted.
We’ll see tomorrow if there is any discomfort or change in vision when my the bandages come off after staying on overnight. Dr. Freedman added healon to her eye. Healon is thick, sort of like honey in consistency and will permeate out over the next day or two. She also added a bubble of air to her eye but that, too, will dissipate quickly.
There are some questions we have to wait to find out the answers to. First of all, will the shunt be able to drain fluid fast enough to keep my daughter’s pressure in normal range? The tube is tiny, but the biggest that could go in. Since my daughter had fluid production problems in the past, we’re hoping the shunt will be enough keep her eye at normal pressure. If not, we’ll have to continue some of the drops we’ve been doing which will slow fluid production in the eye.
Tomorrow we go in to have the bandages removed. Her pressure could vary wildly from two to forty-two as the first day there is a lot in play with the added fluids and the process of surgery. So question one is have we solved the glaucoma problem? We won’t know tomorrow and likely won’t know for sure until we have some data collected over the next month or two. Fortunately we’re in a study at Duke and have a tonometer at home and will measure her pressure regularly.
The second question is will she have any return of vision. This question is the one I don’t want to write about because I’m fairly upset about it. Early last spring my daughter started having a decline in vision. And by last spring I mean 2018, not 2019. Since then we’ve been slowly doing things to try and address it. In retrospect I don’t think we moved quickly enough when we realized there was a problem. Some of this is because it’s hard to get a pressure reading from my daughter but not all of it. We knew something was going on. We didn’t realize the decline in vision was truly pressure-related until much later. We tried medication, hoping, I think, that it was temporary and would resolve with time, especially given that she’d always had low pressure. When that didn’t work we added more drops, then we increased the frequency of the drops. Then we added a pill. Then we increased the frequency of the pill. And we kept on, until it was clear—far too long later upon reflection, that nothing was working and my daughter had a silent vision killer—glaucoma—that was taking the precious little vision she had left.
It was at that point that we all agreed it was time to consult Dr. Freedman, a pediatric glaucoma specialist at Duke. With one visit, we had a plan to put in this implant but that, too, took a long time with one surgery with Dr. Trese first, then our vacations and finally, today with the implant. It’s taken it’s toll though. I clearly remember Dr. Trese saying her optic nerve looked healthy (for the most part). I’m not going back through my surgical notes right now, I have too many people who want to hear how today went, but he never said the optic nerve was significantly damaged. Today, that’s what Dr. Freedman told us.
She also told us it was almost without question because of the glaucoma. I knew glaucoma caused irreparable damage. I knew she had ongoing, unmitigated significantly high pressure. So why didn’t I push for more to be done? Our doctors are wonderful, I don’t fault them. My daughter’s healthcare is in my hands, I must be her advocate. But I didn’t advocate fast enough in my opinion. That damage is irreversible. The vision she’s lost is gone. There is very little chance we’re going to get anything better vision-wise than we have today—and what she has is so very, very little. My daughter didn’t need to lose more. Possibly we could have saved some if I’d taken more action, been more insistent we look into other options, not wasted time hoping things would just get better. Possibly.
Dr. Freedman is a realist, and I like that. She said observed a dip in the optic nerve area, sort of a cup-shaped indentation. Think of the optic nerve as a pipe filled with a million wires. When any of the wires are damaged, they shrivel up and die. And a lot of hers have died. The indentation indicates a lot of the optic nerve has shriveled up and died. I mentioned Dr. Trese’s regenerative medicine and she said that indeed, there could possibly be hope, but that’s not today. The regenerative medicine is also more for the rods and cones of the retina, not for the optic nerve. Our optic nerves are a part of our spinal cord and when the spinal cord is damaged, it doesn’t recover. Is there a chance? Yes, she said there’s always a chance some healing might occur, but realistically, the vision she has today will probably be the best she’ll ever have again.
We don’t talk to my daughter any more about possibly getting vision back, because with her eyes, it’s not likely. We talk about not losing more vision. Dr. Freedman said this was definitely the right decision, going with the implant. I hope it works and we have no more pressure issues in her left eye.
Some good news though was that she encountered very little scar tissue when she made the “Scleral Patch Graph” which means lifting up a piece of the sclera, or white part of the eye, and putting the implant under the flap before stitching it back down. The vitrectomy Dr. Trese did in which he removed all her vitreous also looked good. Although there is a small bit of vitreous he didn’t remove. She understood why he didn’t when she saw it as it looks like removing it might cause the retina to detach in that area. If, however, that piece of vitreous ever breaks off (and this can happen) it could possibly block the shunt and prevent it from doing its job of draining excess aqueous fluid. It’s a low probability, but something to look out for in the years to come. One thing that’s good is my daughter’s cornea. She has a malformation where some of the outermost edges are shortened, but overall the cornea is in good shape.
We talked about my daughter’s right eye, what with the left eye looking like it has no chance for a return of vision. In its current state, my daughter’s right eye as internal scar tissue that completely occludes her ability to see anything. We don’t think her retina is functioning so opening that scar tissue again (Dr. Trese has done this three times only to have it grow back) would be moot and is a risk not worth taking. One thing I did find out though was that if there is ever a chance for her right eye to gain some vision back, possibly with the regenerative medicine Dr. Trese is working on or stem cell implantation, there is hope she will be able to have her brain understand what her eye is seeing. A child born blind, or a child that looses vision very early misses out on the brain mapping of vision, but because my daughter had sight up until four-years-old, her brain has mapped those visual pathways and would be able to interpret what her eye sees. It’s a huge long shot with a lot of variables, but I’m not completely, totally writing off the right eye forever. For now though, her right eye sees nothing, including we think even light perception.
Dr. Freedman was finishing up talking to us when we both got a phone call. My son fell from four feet and had suffered hyper flexion of his wrist at parkour camp. They put him on the phone and he sounded scared and about to cry so I left my husband with my daughter and I headed off to get my son.
I had him checked out and he doesn’t have a any dislocated bones in his wrist and all signs appear nothing is broken. It’s bothering him badly though. My chiropractor recommended having him put his wrist in a bucket of ice water for two minutes every few hours to reduce the already visible inflammation. My son hated it. It hurts—a lot—but he made the two minutes. I think we’re going to have both children home tomorrow, convalescing.
Back to my daughter. She woke up after surgery and you wouldn’t know anything had been done to her eye. It’s bandaged, but otherwise she’s home and is her normal self. I’m asking her to remain calm and not do anything vigorous, which is hard for her. We’re going to make some rubber band bracelets I think in a few minutes when she wants to take a break from her audio book.
Long, long post. Thanks to everyone for the words of encouragement and well-wishes. As my son told me in the car today when I explained to him about his sister’s vision outlook for the future, “I think Reese is a better person because she’s blind. I think she looks great with her glasses on. And she’s smart. She’ll overcome a lot and can do so many things, even though she’s blind. She even found me the other day when we were playing hide and seek even though she couldn’t see."
The Big Boy Update: As my daughter and husband left to go to the hospital this morning my son uncharacteristically said, “Goodbye Reese. I love you."
The Tiny Girl Chronicles: My daughter likes to sing on the phone to Mimi. She makes up songs and tunes as she goes and many times it’s a way to find out how she feels about things or how she sees the world. My mother told me the other day some of the words she sang were, “I can do difficult things, even though I’m blind.” “I am a wonderful girl.” “I am beautiful.” It warms my heart to know she doesn’t dislike herself and thinks she’s capable, despite the blindness.
Tuesday, August 6, 2019
The Mislaid Laundry Basket
It’s starting to get dark earlier, which is always a sadness to me. I like all seasons of the year, but I love Summer Solstice and the time around it when we have the most hours of light in the day. Right now it’s just getting dark as we’re getting the children to bed. I had been toting things upstairs in a laundry basket that had been down and needed to go up, like laundry and toys, and I’d been filling it up with things that needed to go downstairs, like dirty laundry and trash. I was doing this while my husband was reading a story to my children, now in bed.
One of the things I had carried upstairs in the laundry basket was my daughter’s backpack. It’s new and has lots of compartments with pairs of zippers. My daughter’s VI teacher suggested we hang something on the zippers so my daughter would instantly know which compartment she held the zipper for without having to unzip, check inside and then repeat until she got the compartment she was looking for.
I had fun picking different charms to hang on each pair of zippers. I used our vacation as a general theme, putting airplane charms on one set, boats on another, a flip flop, bicycles and then, because I ran out of ideas, I put pompoms on the final set. I had snagged the bag on something and had torn a bicycle off and my daughter told me one of the airplanes had gone missing. I had brought her backpack upstairs with the laundry, now put away. I went down the hall, put the laundry basket on the floor and and went into the craft room with the backpack to put on some replacement charms.
When I was done, it had grown dark outside. I turned off the light in the craft room and walked confidently into the now dark hallway…and ran straight into the laundry basket I’d left on the floor ten minutes before. In this case I knew what I’d stumbled on as soon as my brain processed the sound and feel of what I’d kicked, but before that happened I got a jolt of adrenaline in response to the unknown hazard. Coming from the well-lit craft room, my eyes hadn’t adjusted to the dimness of the hallway or I would have seen it.
I had left it there. I knew what it was, and yet it still startled me. I wasn’t hurt at all but my body reacted with the adrenaline in case I needed to take immediate action in some way. That’s how I reacted to this very known situation. My daughter does this every day, multiple times each day—running into things. She doesn’t know what the things are many times because as much as we tell children (and adults) to not leave shoes on the floor in the middle of the foyer, it still happens. Drawers are never allowed to be left open, even for a minute. The dishwasher when open and drying is always something we tell my daughter about so she’s aware. Dog bones, toys, anything out of place, a wall or even furniture if she gets turned around—they’re all hazards to her.
How does she cope when it happens? Well, for one, she doesn’t like it when I tell her to watch out. She wants to be in control of her body, even if that means she might get hurt. She knows I’m not going to stop keeping her safe, but that independent, feisty little girl in her wants to do it all herself.
It was just a flimsy plastic laundry basket, but it made me think of what my daughter’s life is like in some small way.
The Big Boy Update: I found underwear under the bed tonight. I called my son in and he was actually very upset at what he’d done. He streaked his underwear and, thinking he’d hide the evidence, put them in the laundry basket—where the dog found them. When I showed him and explained that it could make the dog sick, he was very contrite. I told him he knew what he needed to do to clean his underwear and it was far better to let us know, ask for help, anything other than putting them in a spot the dog could get to. He understood. This lesson, I don’t think is going to need much in the way of repeating to him, he was upset and didn’t want to hurt the dog.
The Tiny Girl Chronicles: My daughter has eye surgery tomorrow. She seems fine about the whole thing. She’s done this all before. This time is going to be a bit different and she knows in a way that it will be. We haven’t told her too many details because we have to have the surgery. We’ve had such kind words from friends and family, wishing her the best tomorrow. I’ll send an update here when we have one and I can get to the computer to type. I’m not expecting anything unexpected tomorrow, but some details on what happened will be my main goal. I’m interested in those details myself as this is all new territory for us.
One of the things I had carried upstairs in the laundry basket was my daughter’s backpack. It’s new and has lots of compartments with pairs of zippers. My daughter’s VI teacher suggested we hang something on the zippers so my daughter would instantly know which compartment she held the zipper for without having to unzip, check inside and then repeat until she got the compartment she was looking for.
I had fun picking different charms to hang on each pair of zippers. I used our vacation as a general theme, putting airplane charms on one set, boats on another, a flip flop, bicycles and then, because I ran out of ideas, I put pompoms on the final set. I had snagged the bag on something and had torn a bicycle off and my daughter told me one of the airplanes had gone missing. I had brought her backpack upstairs with the laundry, now put away. I went down the hall, put the laundry basket on the floor and and went into the craft room with the backpack to put on some replacement charms.
When I was done, it had grown dark outside. I turned off the light in the craft room and walked confidently into the now dark hallway…and ran straight into the laundry basket I’d left on the floor ten minutes before. In this case I knew what I’d stumbled on as soon as my brain processed the sound and feel of what I’d kicked, but before that happened I got a jolt of adrenaline in response to the unknown hazard. Coming from the well-lit craft room, my eyes hadn’t adjusted to the dimness of the hallway or I would have seen it.
I had left it there. I knew what it was, and yet it still startled me. I wasn’t hurt at all but my body reacted with the adrenaline in case I needed to take immediate action in some way. That’s how I reacted to this very known situation. My daughter does this every day, multiple times each day—running into things. She doesn’t know what the things are many times because as much as we tell children (and adults) to not leave shoes on the floor in the middle of the foyer, it still happens. Drawers are never allowed to be left open, even for a minute. The dishwasher when open and drying is always something we tell my daughter about so she’s aware. Dog bones, toys, anything out of place, a wall or even furniture if she gets turned around—they’re all hazards to her.
How does she cope when it happens? Well, for one, she doesn’t like it when I tell her to watch out. She wants to be in control of her body, even if that means she might get hurt. She knows I’m not going to stop keeping her safe, but that independent, feisty little girl in her wants to do it all herself.
It was just a flimsy plastic laundry basket, but it made me think of what my daughter’s life is like in some small way.
The Big Boy Update: I found underwear under the bed tonight. I called my son in and he was actually very upset at what he’d done. He streaked his underwear and, thinking he’d hide the evidence, put them in the laundry basket—where the dog found them. When I showed him and explained that it could make the dog sick, he was very contrite. I told him he knew what he needed to do to clean his underwear and it was far better to let us know, ask for help, anything other than putting them in a spot the dog could get to. He understood. This lesson, I don’t think is going to need much in the way of repeating to him, he was upset and didn’t want to hurt the dog.
The Tiny Girl Chronicles: My daughter has eye surgery tomorrow. She seems fine about the whole thing. She’s done this all before. This time is going to be a bit different and she knows in a way that it will be. We haven’t told her too many details because we have to have the surgery. We’ve had such kind words from friends and family, wishing her the best tomorrow. I’ll send an update here when we have one and I can get to the computer to type. I’m not expecting anything unexpected tomorrow, but some details on what happened will be my main goal. I’m interested in those details myself as this is all new territory for us.
Monday, August 5, 2019
Before Surgery
My daughter has surgery on Wednesday. We haven’t made a big deal of it, saying she’s had a lot of surgeries before, but I know this is no small thing. The largest intrusive surgery she’s had from her perspective was the cataract removal. It was big because the stitch in her eye was uncomfortable for days and she didn’t want to open her eye.
This procedure is bigger still in that a lot will be done on the exterior of her eye which will mean she’ll feel it when she wakes up. My understanding is a flap will be cut into her eye above where the lid is. An appliance will be put in place and a small cannula will be inserted into the body of her eye.
The appliance is smart in that it can detect high pressure and let fluid escape via the cannula when needed. Here’s a diagram of what it will look like:
It’s big, yeah. I’ll let you know more when we know more.
The Big Boy Update: My son came down this morning and was very sweet to both his father and me, giving us compliments on what great parents we are and he knows we try hard. The night last night didn’t end well for his sister after some defiance and insulting and he saw her deal with the consequences. He was nice and polite all day today. Sometimes a big, hard lesson is important, I think. Even if that lesson isn’t yours but you see it happening to your sibling.
The Tiny Girl Chronicles: My daughter got in big trouble last night after a lovely dinner at my in-laws. She had many chances to redeem herself, including her brother imploring her to reconsider. She thought she was above the law. She was not. She went to bed without pajamas, brushing her teeth, drops or medicine. You’d think she’d be happy about some of that, but when not allowed to do them, suddenly she wanted to drops and was upset she couldn’t take the pill she normally dislikes taking. Today she had an attitude adjustment and was back to being my kind, sweet little girl.
This procedure is bigger still in that a lot will be done on the exterior of her eye which will mean she’ll feel it when she wakes up. My understanding is a flap will be cut into her eye above where the lid is. An appliance will be put in place and a small cannula will be inserted into the body of her eye.
The appliance is smart in that it can detect high pressure and let fluid escape via the cannula when needed. Here’s a diagram of what it will look like:
It’s big, yeah. I’ll let you know more when we know more.
The Big Boy Update: My son came down this morning and was very sweet to both his father and me, giving us compliments on what great parents we are and he knows we try hard. The night last night didn’t end well for his sister after some defiance and insulting and he saw her deal with the consequences. He was nice and polite all day today. Sometimes a big, hard lesson is important, I think. Even if that lesson isn’t yours but you see it happening to your sibling.
The Tiny Girl Chronicles: My daughter got in big trouble last night after a lovely dinner at my in-laws. She had many chances to redeem herself, including her brother imploring her to reconsider. She thought she was above the law. She was not. She went to bed without pajamas, brushing her teeth, drops or medicine. You’d think she’d be happy about some of that, but when not allowed to do them, suddenly she wanted to drops and was upset she couldn’t take the pill she normally dislikes taking. Today she had an attitude adjustment and was back to being my kind, sweet little girl.
Sunday, August 4, 2019
On Top Of Things
My mother believes I’m just like her in that I always stay on top of things. In a way, I am, but I’m also not. I think I have some of my mother and father in methodology in certain areas. For example, my father is a collector. He loves to collect all sorts of things. His collections are always interesting and consist of things most people wouldn’t collect.
I collect things. I have quirky collections. My father has a basement in the house I grew up in (that my parents still live in in the winter months). My father would buy all sorts of things at yard sales and things would pile up in the basement, in the shed, in the basement of the rental house they had, in the storage unit. At times when I was a child there would be a path you had to walk through in the basement. My father is not a hoarder though—his collecting was not out of control and he would go through and organize and clean out things from time to time. The basement was one of the most interesting places in the house to me as a child.
My mother never had anything out of order. She had a few small collections, but they were small in size and number and weren’t overtaking in any way. I’m like my mother in that I collect in an orderly fashion and my collections are always organized.
But then there’s paperwork. My mother likely never paid a bill late and always filed everything in the appropriate folder as soon as she paid the bill. I dislike paperwork. I don’t want to do it. So I procrastinate. In this way I’m a lot like my father. He waits until the very end to do things sometimes, like (I think) taxes. My mother has her taxes ready for the statements to come in the mail and I would bet she could win the prize for “First Client With Their Taxes In” at their accountant’s ten years running now—if only she didn’t have to wait for my father to get his part completed...
So I do things in batches. I do like having everything done and caught up, but I don’t like doing emails, paperwork, bills, etc. Today I got a section of things caught up that I got behind on while we were on vacation. I could have gotten some things done on vacation, but the bottom line is, I didn’t wanna.
So, I have to go file after I post this. On the upside, I don’t have a pile of papers to look at and be annoyed by anymore.
The Big Boy Update: My son got upset about doing homework today. He has to do some over the summer and we’ve gotten behind because of vacations. I took a new tactic on him today when I heard him yelling (wailing? negotiating? arguing? pleading?) with his father. I called down from the second floor where I was working that he was disrespecting his father and if I heard one more thing out of him (I said some consequence at this point but I don’t remember what it was right now). That angle worked. My husband stepped out of the situation for a bit and when he came back my son was much more respectful. Parenting, it’s so trial and error.
The Tiny Girl Chronicles: My daughter came in this morning and asked me to remind her how to make the water bomb base and the preliminary fold (two of the most common bases in origami). She had made the folds, but she couldn’t get the paper to collapse into the square or triangle. Both bases are the same four folds, each side of the paper collapses to a different base. I showed her how to cup her hands and let the paper fold up for her. Now that she has those two bases, she can make up lots of folds or learn models I teach her based on them. Next step: the water bomb itself—a model you get to blow up into a ball. I think she’ll love that.
I collect things. I have quirky collections. My father has a basement in the house I grew up in (that my parents still live in in the winter months). My father would buy all sorts of things at yard sales and things would pile up in the basement, in the shed, in the basement of the rental house they had, in the storage unit. At times when I was a child there would be a path you had to walk through in the basement. My father is not a hoarder though—his collecting was not out of control and he would go through and organize and clean out things from time to time. The basement was one of the most interesting places in the house to me as a child.
My mother never had anything out of order. She had a few small collections, but they were small in size and number and weren’t overtaking in any way. I’m like my mother in that I collect in an orderly fashion and my collections are always organized.
But then there’s paperwork. My mother likely never paid a bill late and always filed everything in the appropriate folder as soon as she paid the bill. I dislike paperwork. I don’t want to do it. So I procrastinate. In this way I’m a lot like my father. He waits until the very end to do things sometimes, like (I think) taxes. My mother has her taxes ready for the statements to come in the mail and I would bet she could win the prize for “First Client With Their Taxes In” at their accountant’s ten years running now—if only she didn’t have to wait for my father to get his part completed...
So I do things in batches. I do like having everything done and caught up, but I don’t like doing emails, paperwork, bills, etc. Today I got a section of things caught up that I got behind on while we were on vacation. I could have gotten some things done on vacation, but the bottom line is, I didn’t wanna.
So, I have to go file after I post this. On the upside, I don’t have a pile of papers to look at and be annoyed by anymore.
The Big Boy Update: My son got upset about doing homework today. He has to do some over the summer and we’ve gotten behind because of vacations. I took a new tactic on him today when I heard him yelling (wailing? negotiating? arguing? pleading?) with his father. I called down from the second floor where I was working that he was disrespecting his father and if I heard one more thing out of him (I said some consequence at this point but I don’t remember what it was right now). That angle worked. My husband stepped out of the situation for a bit and when he came back my son was much more respectful. Parenting, it’s so trial and error.
The Tiny Girl Chronicles: My daughter came in this morning and asked me to remind her how to make the water bomb base and the preliminary fold (two of the most common bases in origami). She had made the folds, but she couldn’t get the paper to collapse into the square or triangle. Both bases are the same four folds, each side of the paper collapses to a different base. I showed her how to cup her hands and let the paper fold up for her. Now that she has those two bases, she can make up lots of folds or learn models I teach her based on them. Next step: the water bomb itself—a model you get to blow up into a ball. I think she’ll love that.
Saturday, August 3, 2019
Posting on Facebook
My daughter and I had lunch with Raffaella, her old braillest from preschool, today. My daughter’s memory is interesting and is typical of young children in that people who were key and prevalent in their lives for a significant period aren’t necessarily people they remember. My daughter’s beloved Children’s House teacher, for example, who she was with for three years, she didn’t even remember when I mentioned her some time back. But Raffaella, who only spent two hours with her each week for a year-and-a-half before she went to elementary school, she immediately remembered.
Raffaella met us at Pei Wei and had a present of a sequined, unicorn mini-backpack for my daughter. We hugged and caught up on things both from my daughter talking about school, our fun vacation and adult things. Raffaella works very hard. The public school system has asked more of her than she can possibly accomplish in a week.
She provides visual impairment services to itinerant student in preschool, meaning students that aren’t in a VI specific school. A school had closed and she was saddled with more students—students she has to drive to every day to work with. There were varying schools but even with the drive time, she couldn’t be there when it was circle time, lunch time, recess or nap time. Fitting in six student sessions every day across schools meeting within those times was challenging enough. But that was only the rewarding part of her job.
She loves working with the students. It’s all the paperwork, staff meetings, evaluations, IEP meetings and student assessments, and other preliminary work required to have those meetings that made her job nigh impossible to do without lots of weekend work. Many of those meetings could be four hours long and as a recipient of an IEP, there is a lot of work to just get to the meeting alone. I don’t know how she, or any of them do it.
Couple that with angry parents who, for whatever reason, threaten to sue the school system. I can’t understand that personally, but apparently it’s not uncommon for parents to become that angry, even though the teachers and professionals decided to enter the field because they want to help children learn. As my mother and father told me when I was young (they were both school teachers): “be whatever you want to be when you grow up. We love what we do, but there’s no money in education.” They loved teaching students, helping them learn.
So it baffles me to no end why there is so much strife over IEPs and teachers. To be sure, I think we have the best teachers, but I realistically know there are many talented people in the field of education, all wanting to do the very best to help our small beings become the best they can be. But I’m on a soapbox again and that wasn’t the point of this post at all. I’m realizing this because I haven’t even gotten to the subject the blog post title is about. So let me step off the box, closing with that our lunch was lovely and we plan to get together again in the future.
My daughter and I got home and I asked her if she wanted to work on some origami models. She’s been obsessed with something called the “Sonobe Unit,” a seven-fold model that can be made in bulk and put together to make different shapes. This is called “Modular Origami” in which modules are made and then combined into a larger object like a box, ring or ball.
She’s made so many of these units, working on her accuracy, that I just stopped putting them together until I got direction from her. Three make a tetrahedron, six make a cube, nine make two connecting cubes, twelve make a ball and thirty make a bigger, more impressive ball. Her accuracy isn’t ideal, but it’s getting better. I’ve been trying to come up with ways to help her fold without being able to see the creases, which are sometimes hard to feel.
She and I have also been working on our terminology. It is very easy for me to show you what to fold when you can look at my version of the model and watch me move the paper into position. It is, on the other hand, much more challenging to figure out what I mean when you have to touch the paper to see what I’m doing. I can make the fold on her paper, but that does the job for her and that’s no better.
We’ve been working on paper orientation terms such as does bottom mean the bottom area of the paper or underneath? Ways to define where on the paper such as “raw edge” versus “folded edge”. She knows what a mountain fold and a valley fold are now and understands that all folds are both, it just depends on how you have the fold oriented as it makes a V in one direction (valley) but flipped over, that same fold makes a ^ mountain.
There is a popular origami creator I follow on YouTube. He’s very prolific, coming out with models ranging from simple to complex, funny or action models and a lot related to current pop culture. His videos clearly show how to fold the models, but the number of times he says, “right here” in each video is easily over fifty for the longer ones. I can’t do that with my daughter. I have to reference known landmarks such as the last fold we made or other known area she can find. Then I need to clearly define what to do next in words, so she can do the fold herself.
I do have to show her things, but once she understands what I’m asking for, she can do it herself. Today we alternated with her inventing models, mostly of the airplane or flower variety and me teaching her things like a crab, pencil, several bases and then finally, the flapping bird. This was the most complicated model she’s made and it involved some frustration to the both of us from a communication standpoint. But when she was done and I showed her the wings, head, tail and how you cold hold it and make it flap, she said, “I’m gonna go show daddy my new origami. And I might even put it on Facebook.” (she doesn’t have a Facebook account.)
The Big Boy Update: Dear husband, Nana, Papa, Mimi, Gramps and anyone else who is going to read this that might talk to my son: I am not telling this story. Son, I hope you can forgive me for telling the story when you’re older and read this. Yesterday Shane took my son to the trampoline place. She asked him to do something he didn’t want to do—twice. My son said, “bitch” under his breath as he consented and left the area. She heard him although he denied saying it. She made him sit on the sidelines, doing nothing until she said he was, “bored to tears”. She told him he was never, ever to say that again. She’s great. She handled it so well. Better than I would have, probably, if I’d heard him call her that.
The Tiny Girl Chronicles: My daughter and I are trying to figure out ways for me to show her things. This goes beyond origami and is a bit of a sticking point with us. Instead of letting you show you, as soon as you start to try, she makes her first guess. She will do this repeatedly, even if I say, “let me know when you’re done guessing and would like me to show you.” When she’s in a receptive mood things work well, but she’s strong headed and likes to figure things out. Not being able to see, she doesn’t know if her guessing is way off. So we’re working on it. I want her to not be frustrated. She gets very excited when she’s figured something out or learned something new and can go and repeat it. Case in point, she’s been folding little squares non-stop for close to a week now.
Raffaella met us at Pei Wei and had a present of a sequined, unicorn mini-backpack for my daughter. We hugged and caught up on things both from my daughter talking about school, our fun vacation and adult things. Raffaella works very hard. The public school system has asked more of her than she can possibly accomplish in a week.
She provides visual impairment services to itinerant student in preschool, meaning students that aren’t in a VI specific school. A school had closed and she was saddled with more students—students she has to drive to every day to work with. There were varying schools but even with the drive time, she couldn’t be there when it was circle time, lunch time, recess or nap time. Fitting in six student sessions every day across schools meeting within those times was challenging enough. But that was only the rewarding part of her job.
She loves working with the students. It’s all the paperwork, staff meetings, evaluations, IEP meetings and student assessments, and other preliminary work required to have those meetings that made her job nigh impossible to do without lots of weekend work. Many of those meetings could be four hours long and as a recipient of an IEP, there is a lot of work to just get to the meeting alone. I don’t know how she, or any of them do it.
Couple that with angry parents who, for whatever reason, threaten to sue the school system. I can’t understand that personally, but apparently it’s not uncommon for parents to become that angry, even though the teachers and professionals decided to enter the field because they want to help children learn. As my mother and father told me when I was young (they were both school teachers): “be whatever you want to be when you grow up. We love what we do, but there’s no money in education.” They loved teaching students, helping them learn.
So it baffles me to no end why there is so much strife over IEPs and teachers. To be sure, I think we have the best teachers, but I realistically know there are many talented people in the field of education, all wanting to do the very best to help our small beings become the best they can be. But I’m on a soapbox again and that wasn’t the point of this post at all. I’m realizing this because I haven’t even gotten to the subject the blog post title is about. So let me step off the box, closing with that our lunch was lovely and we plan to get together again in the future.
My daughter and I got home and I asked her if she wanted to work on some origami models. She’s been obsessed with something called the “Sonobe Unit,” a seven-fold model that can be made in bulk and put together to make different shapes. This is called “Modular Origami” in which modules are made and then combined into a larger object like a box, ring or ball.
She’s made so many of these units, working on her accuracy, that I just stopped putting them together until I got direction from her. Three make a tetrahedron, six make a cube, nine make two connecting cubes, twelve make a ball and thirty make a bigger, more impressive ball. Her accuracy isn’t ideal, but it’s getting better. I’ve been trying to come up with ways to help her fold without being able to see the creases, which are sometimes hard to feel.
She and I have also been working on our terminology. It is very easy for me to show you what to fold when you can look at my version of the model and watch me move the paper into position. It is, on the other hand, much more challenging to figure out what I mean when you have to touch the paper to see what I’m doing. I can make the fold on her paper, but that does the job for her and that’s no better.
We’ve been working on paper orientation terms such as does bottom mean the bottom area of the paper or underneath? Ways to define where on the paper such as “raw edge” versus “folded edge”. She knows what a mountain fold and a valley fold are now and understands that all folds are both, it just depends on how you have the fold oriented as it makes a V in one direction (valley) but flipped over, that same fold makes a ^ mountain.
There is a popular origami creator I follow on YouTube. He’s very prolific, coming out with models ranging from simple to complex, funny or action models and a lot related to current pop culture. His videos clearly show how to fold the models, but the number of times he says, “right here” in each video is easily over fifty for the longer ones. I can’t do that with my daughter. I have to reference known landmarks such as the last fold we made or other known area she can find. Then I need to clearly define what to do next in words, so she can do the fold herself.
I do have to show her things, but once she understands what I’m asking for, she can do it herself. Today we alternated with her inventing models, mostly of the airplane or flower variety and me teaching her things like a crab, pencil, several bases and then finally, the flapping bird. This was the most complicated model she’s made and it involved some frustration to the both of us from a communication standpoint. But when she was done and I showed her the wings, head, tail and how you cold hold it and make it flap, she said, “I’m gonna go show daddy my new origami. And I might even put it on Facebook.” (she doesn’t have a Facebook account.)
The Big Boy Update: Dear husband, Nana, Papa, Mimi, Gramps and anyone else who is going to read this that might talk to my son: I am not telling this story. Son, I hope you can forgive me for telling the story when you’re older and read this. Yesterday Shane took my son to the trampoline place. She asked him to do something he didn’t want to do—twice. My son said, “bitch” under his breath as he consented and left the area. She heard him although he denied saying it. She made him sit on the sidelines, doing nothing until she said he was, “bored to tears”. She told him he was never, ever to say that again. She’s great. She handled it so well. Better than I would have, probably, if I’d heard him call her that.
The Tiny Girl Chronicles: My daughter and I are trying to figure out ways for me to show her things. This goes beyond origami and is a bit of a sticking point with us. Instead of letting you show you, as soon as you start to try, she makes her first guess. She will do this repeatedly, even if I say, “let me know when you’re done guessing and would like me to show you.” When she’s in a receptive mood things work well, but she’s strong headed and likes to figure things out. Not being able to see, she doesn’t know if her guessing is way off. So we’re working on it. I want her to not be frustrated. She gets very excited when she’s figured something out or learned something new and can go and repeat it. Case in point, she’s been folding little squares non-stop for close to a week now.
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