Last week Abby started back to preschool. Because of the intensity of her patching (8 hours a day), it's impossible for us to send her to school without the patch on. The knowledge that I would be sending my daughter to preschool legally blind was devastating. I met with the preschool director and teachers, and also the learning specialists the school has on staff. These are all people that care about Abby very deeply, and only want the best for her.
The first day (a Wednesday), we were all well-prepared. I took Abby to school a half-hour early, so she could acclimate to the classroom in a calmer, stress-free environment. All three teachers were there, as were both learning specialists and an intern! Abby had more attention than she knew what to do with. I was afraid that the separation would be difficult for her, as she had had some trouble even staying home with Daddy while I went to the grocery store the previous week. But, she did great! With that amount of adult attention focused on her, she felt very confident and had a wonderful day. She even tried fine-motor activities at school that she had been refusing to do at home.
The second day was not so fantastic. Because she had done well the first day, I guess we were all thinking that everything was just fine. But, without the early arrival and without all the adult attention, dropoff the second time around was a nightmare. She clung to my leg, she cried when I left, and there were no extra hands in the classroom to help the teachers deal with it. Aside from the playground incident involving the kids Abby calls, "the mean boys," she eventually recovered and had a good day, which was quite a relief.
Now that the third day is behind us, I think we've reached a point at which we understand what she needs - a little bit of an early arrival (mom's responsibility) so that the separation is a little bit calmer, watchfulness on the playground (school's responsibility) to prevent all kinds of incidents, and a little bit of one-on-one time with the learning specialists to make sure that Abby is doing the things she is supposed to do.
We are fortunate that we were enrolled in a preschool that was willing to work with us and make Abby's experience wearing her patch to school the best it could possibly be. It still is not easy for her, but the right amount of intervention makes all the difference.
Wednesday, January 13, 2010
Thursday, January 7, 2010
Questions, Questions, Questions
So, now we are home. We came back from Utah and had a very pleasant 9-hour drive with the children (I realize how impossible that sounds, but it's true - it really is). We didn't have the heart to patch Abby during that long drive, since we had planned on showing movies to the kids. Television-watching is still so difficult for her. She finds it hard to see the images, and even though my in-laws have a 60-inch giant screen TV, she had to sit about six inches from the screen to see the images.
It's been interesting to be back in our familiar environment - back to swimming lessons, back to our regular grocery store and our regular lives. One of the most difficult things has been all the questions people will ask us while we are out. When we were away, we didn't routinely run into people we know, and strangers (for the most part) were too polite to ask about the patch. Now that we are home, that has all changed.
Though I had forewarned the swimming school, when we arrived for the first time with the patch on the receptionist and lifeguard both asked Abby, "What happened?" Most people seem to thing it's some sort of accident. When we went to the grocery store the clerks asked her, "Did you get an owie on your eye?" I was completely unprepared for this and so had not given Abby any tools for how to deal with it. The first few times, she would run and hide her face behind my legs, or cover her face with her eyes and start crying. I finally came up with two standard answers that she is free to choose from if people ask:
1. I have a lazy eye (too hard to teach her to say "amblyopia"). I have to wear this patch to make my eye stronger, or
2. I don't feel like talking about it right now.
More often than not, when strangers ask, she chooses option 2. To her friends, she will usually give answer #1.
It's been interesting to be back in our familiar environment - back to swimming lessons, back to our regular grocery store and our regular lives. One of the most difficult things has been all the questions people will ask us while we are out. When we were away, we didn't routinely run into people we know, and strangers (for the most part) were too polite to ask about the patch. Now that we are home, that has all changed.
Though I had forewarned the swimming school, when we arrived for the first time with the patch on the receptionist and lifeguard both asked Abby, "What happened?" Most people seem to thing it's some sort of accident. When we went to the grocery store the clerks asked her, "Did you get an owie on your eye?" I was completely unprepared for this and so had not given Abby any tools for how to deal with it. The first few times, she would run and hide her face behind my legs, or cover her face with her eyes and start crying. I finally came up with two standard answers that she is free to choose from if people ask:
1. I have a lazy eye (too hard to teach her to say "amblyopia"). I have to wear this patch to make my eye stronger, or
2. I don't feel like talking about it right now.
More often than not, when strangers ask, she chooses option 2. To her friends, she will usually give answer #1.
Saturday, January 2, 2010
Patching Begins
Ten days ago, we began patching Abby's good eye. We started this while on a trip to Grandma and Grampa's house, in hopes that having other adults around to distract both Abby and her younger brother would be of some help. With our ophthalmologist's input, we decided on a gradual approach, starting with just two hours on the first day and gradually increasing to the target 8 hours per day.
It has been a difficult process getting used to the patch. It is as much a change for us as it is for her, and so hard to watch her struggle to see. Her resistance has been strong, with much yelling, screaming, kicking, sobbing, begging, and pleading.
The first few days, we made the mistake of having one parent put the patch on (mom), and the other take it off at the end of the session (dad). After a day or two of being the bad guy, I told my husband that was no longer acceptable. If I have to deal with the trauma of putting the patch on, I get to be the parent taking it off. He completely understood.
We decided on a reward system using stickers for each day of successful patching, with the accumulation of a certain number of stickers leading to a prize. We started off with 3 stickers leading to a prize and are now up to 5.
We find that the first hour or two she wears the patch, Abby struggles very much with her vision. She can get around the house, but really she just wants to be held. After that first bit, though, her vision improves and she is able to play independently, play with her brother, do art, and feed herself.
Ten days ago, we began patching Abby's good eye. We started this while on a trip to Grandma and Grampa's house, in hopes that having other adults around to distract both Abby and her younger brother would be of some help. With our ophthalmologist's input, we decided on a gradual approach, starting with just two hours on the first day and gradually increasing to the target 8 hours per day.
It has been a difficult process getting used to the patch. It is as much a change for us as it is for her, and so hard to watch her struggle to see. Her resistance has been strong, with much yelling, screaming, kicking, sobbing, begging, and pleading.
The first few days, we made the mistake of having one parent put the patch on (mom), and the other take it off at the end of the session (dad). After a day or two of being the bad guy, I told my husband that was no longer acceptable. If I have to deal with the trauma of putting the patch on, I get to be the parent taking it off. He completely understood.
We decided on a reward system using stickers for each day of successful patching, with the accumulation of a certain number of stickers leading to a prize. We started off with 3 stickers leading to a prize and are now up to 5.
We find that the first hour or two she wears the patch, Abby struggles very much with her vision. She can get around the house, but really she just wants to be held. After that first bit, though, her vision improves and she is able to play independently, play with her brother, do art, and feed herself.
Monday, December 28, 2009
Explanations
December 12, 2009
Explanations
So, after digesting the news ourselves, the next step was to tell everyone - family, friends, preschool teachers, etc. It was so interesting to watch how differently people reacted. Some went straight to reassuring mode, so much so that it seemed at times they were trying to gloss over the fact that there was a problem at all. Some (and this was much appreciated) threw themselves into trying to help Abby any way they could.
We wound up doing a lot of research, and were so glad to be introduced to the tool PubMed, where the National Institutes of Health makes publicly available articles from medical and other scholarly journals. Unfortunately, the articles on amblyopia weren't as numerous as we had hoped. And, in every single study, Abby's condition in her bad eye (20/400) was the worst included in the study and was in the group which made the least amount of progress. What we found was pretty much what the ophthalmologist had told us - patching is still the one and only treatment widely available. There was one doctor at Baylor studying PRK (laser surgery) for amlyopic children in 2006, but the surgery had only been performed in about 118 kids. We plan to ask the ophthalmologist about this at our next visit, but I'm sure he won't recommend it.
Explanations
So, after digesting the news ourselves, the next step was to tell everyone - family, friends, preschool teachers, etc. It was so interesting to watch how differently people reacted. Some went straight to reassuring mode, so much so that it seemed at times they were trying to gloss over the fact that there was a problem at all. Some (and this was much appreciated) threw themselves into trying to help Abby any way they could.
We wound up doing a lot of research, and were so glad to be introduced to the tool PubMed, where the National Institutes of Health makes publicly available articles from medical and other scholarly journals. Unfortunately, the articles on amblyopia weren't as numerous as we had hoped. And, in every single study, Abby's condition in her bad eye (20/400) was the worst included in the study and was in the group which made the least amount of progress. What we found was pretty much what the ophthalmologist had told us - patching is still the one and only treatment widely available. There was one doctor at Baylor studying PRK (laser surgery) for amlyopic children in 2006, but the surgery had only been performed in about 118 kids. We plan to ask the ophthalmologist about this at our next visit, but I'm sure he won't recommend it.
Monday, December 14, 2009
Diagnosis
Tuesday, December 8, 2009
Today we took our 4-year-old daughter to the ophthalmologist - a step recommended by our pediatrician, who, at Abby's annual checkup, had noticed something amiss in Abby's eyes.
We arrived at the ophthalmologist's office about 15 minutes early. They had a movie playing and lollipops available, so the appointment started off pleasantly, as far as our daughter was concerned. When they took us into the back, the first thing they did was sit her in front of the machine. The nurse (PA?) told her they were taking pictures of her eyes. Still, it seemed to be going well.
It was when we got into the exam room that the downward spiral started. With each test that required covering her right eye, it became apparent even to non-experts such as my husband and myself that something was terribly, utterly, uncontrollably wrong. When our daughter failed to see any of the 3-D images, even with both eyes uncovered and the 3-D glasses on, I started to guess how bad it might be. And when a true eyepatch was placed over her right eye, and she could not see the letter E that was 2 inches from her face, the idea of what we were up against really hit me.
The nurse put the dilating drops into Abby's eyes and sent us back into the waiting room for 45 minutes. Of course, Kip and I had nothing to talk about except what we had noticed during the exam. Thankfully, the movie was still playing and Abby was blissfully oblivious to what was going on in our minds.
Eventually, they called us back into the exam room, and this time, the ophthalmologist himself tested Abby's eyes. He told us it was a very severe case of amblyopia, or lazy eye. Her left eye simply was not doing its job, and left untreated, would lose all vision completely. He explained that we would have to undertake a very aggressive patching program with her. He tried his best to lay out for us how difficult the coming year(s) would be, but we were so shocked by this news that almost none of what he said really sunk in. I cried all the way home.
Today we took our 4-year-old daughter to the ophthalmologist - a step recommended by our pediatrician, who, at Abby's annual checkup, had noticed something amiss in Abby's eyes.
We arrived at the ophthalmologist's office about 15 minutes early. They had a movie playing and lollipops available, so the appointment started off pleasantly, as far as our daughter was concerned. When they took us into the back, the first thing they did was sit her in front of the machine. The nurse (PA?) told her they were taking pictures of her eyes. Still, it seemed to be going well.
It was when we got into the exam room that the downward spiral started. With each test that required covering her right eye, it became apparent even to non-experts such as my husband and myself that something was terribly, utterly, uncontrollably wrong. When our daughter failed to see any of the 3-D images, even with both eyes uncovered and the 3-D glasses on, I started to guess how bad it might be. And when a true eyepatch was placed over her right eye, and she could not see the letter E that was 2 inches from her face, the idea of what we were up against really hit me.
The nurse put the dilating drops into Abby's eyes and sent us back into the waiting room for 45 minutes. Of course, Kip and I had nothing to talk about except what we had noticed during the exam. Thankfully, the movie was still playing and Abby was blissfully oblivious to what was going on in our minds.
Eventually, they called us back into the exam room, and this time, the ophthalmologist himself tested Abby's eyes. He told us it was a very severe case of amblyopia, or lazy eye. Her left eye simply was not doing its job, and left untreated, would lose all vision completely. He explained that we would have to undertake a very aggressive patching program with her. He tried his best to lay out for us how difficult the coming year(s) would be, but we were so shocked by this news that almost none of what he said really sunk in. I cried all the way home.
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